Yesterday Jan was supposed to relax, but Saturday ended being as busy as any other weekday. She has an internal clock set to follow the rhythms of the hospital: breakfast at 8am, lunch at noon sharp, dinner at 6pm, bedtime at 8:30pm. If any of these changes, she makes it clearly known: get in with the music or your kneecaps may need some orthopaedic surgery.
My life rythms surely appear totally chaotic to her. food whenever, sleep, if you can find the time, run, run, run, and on top of that, when she comes for the weekend, I felt the compulsion to help her with every little detail, anticipate her every desire, thinking that I was doing her a favour, I was just making her feel like an invalid or a child.
I felt sick not so much because of Jan's comments about my constant rush, and smothering style of service, as for the fact that I in this rush I am loosing her and myself. I need to stop to find myself. She told me repeatedly she wanted to spend time with ME, not being catered to like a queen, but being attended by the attention and calmness of her husband's company. Screw the rest, the tea, the food experiments, the heat or the cold. Suddenly, I understood the value of company. Thanks to David for doing the dishes while I was trying to learn and practice this lesson.
Saturday, Jan had a really bad night. To her tiredness, add the dangers of a misunderstandings and you have a near catastrophe. I was on the phone with Sue when this whole event happened. She was warning me of the possibility that without much prodding, Jan could go for weeks or months without more therapy or home support after she leaves the Rehab hospital. That, I could be left by the "system" with the whole responsibility of taking care of Jan. Then I did something or said something that pushed Jan's buttons. Jan cried for a good half hour before she decided to go back to bed. At this point my thoughts and my feelings were in frenzy. Jan took one minute before she went to sleep while I was left reeling for hours.
This morning, Jan continued with a rough style of asking for things or answering questions. I tried to keep in mind that "it was the injury talking to me and not Jan", but it was really hard to do. Shortly after noon, at Jan's request I took her back to the hospital which she calls "home". She was weepy and I was feeling raw. What a way to end what was promising to be a beautiful weekend. But then again, this may be what I will have to expect for months while Jan's brain heals. I felt powerless and anxious. The challenge feels a lot bigger than me.
-Fede
Sunday, April 30, 2006
Saturday, April 29, 2006
Anniversary Friday
Last night we celebrated Linda's birthday. Linda is our leader, a wonderful woman of God who's heart is as soft as a flower, whose teachings and actions are as hard as a rock. Jan and I owe her so much, including the fact that it was on one of her birthdays that Jan and I met. Hapy occasion in so many ways. Lovely dinner, true friends, Bright day. Everything was just perfect for a celebration and celebrate we did. Joy, as always, played a wonderful hostess. The troops, all of them, as loving and giving as always. David had given Jan a ride and I met them at the entrance. Jan was beaming, truly enjoying the moment. This was one of those gatherings that can explain the meaning of life.
Jan greeted some at the party and missed some, those on her right field. I hope no one felt ignored by Jan. She just did not register them because she didn't see them. Her speech was good at the beginning, although as the emotion went up, her speech became more garbled. Nonetheless, she just wanted to enjoy the moment. She talked to several one to one. I noticed that she could handle conversations in small groups well. After eating very well -I was reminded that she had dinner at the hospital before coming to the party!-, we went outside for a little respite. Too many people and too much noise made her feel overwhelmed. After about an hour, the presentation of the gifts started. I explained the meaning of our gift, and Jan to everyone's surpise, stood up and made a 1 minute speech, about how special Linda is for her and sending her a blessing. She found most of the words she was looking for, missed some, but compensated wonderfully with gestures and other ways of communication.
we left soon after because she had reached her limit. On the way home, after a cat nap, she commented very animated about the party. What a joy to see Jan so alive. A night like this made the last three months pale in our memories.
Thanks Linda, thanks Jan
-Fede
Jan greeted some at the party and missed some, those on her right field. I hope no one felt ignored by Jan. She just did not register them because she didn't see them. Her speech was good at the beginning, although as the emotion went up, her speech became more garbled. Nonetheless, she just wanted to enjoy the moment. She talked to several one to one. I noticed that she could handle conversations in small groups well. After eating very well -I was reminded that she had dinner at the hospital before coming to the party!-, we went outside for a little respite. Too many people and too much noise made her feel overwhelmed. After about an hour, the presentation of the gifts started. I explained the meaning of our gift, and Jan to everyone's surpise, stood up and made a 1 minute speech, about how special Linda is for her and sending her a blessing. She found most of the words she was looking for, missed some, but compensated wonderfully with gestures and other ways of communication.
we left soon after because she had reached her limit. On the way home, after a cat nap, she commented very animated about the party. What a joy to see Jan so alive. A night like this made the last three months pale in our memories.
Thanks Linda, thanks Jan
-Fede
Thursday, April 27, 2006
Lunch break
Jan was resting after lunch. She thought outside was warm, because the day looked sunny and bright from her window. She asked me why I was wearing my jacket. She had trouble finding the word but then pointed to it. I brought some clean clothes for her. She remembered clearly my comment from last night; I told her that I was going out of town and I would not be attending our everyday date for dinner today. She also remembered the weekend pass, but was confused about what day was today. She liked the chocolates I brought for her. She ate two bars in a row. When I told her that she needed to get fat, she laughed really hard. She said she liked the way she looks now, because she can wear any clothes she wants.
We went for a walk around the building and then to the office of Sol, her speech therapist. I asked her about her name: Soledad Silencieux, a combination of Spanish and French: Loneliness Silent. Jan thought that it was very appropriate because Sol is a reserved person who listens more than talk. While we were waiting, one of Sol colleagues came out and greeted Jan, Jan wanted to go the washroom and tried to ask where was the washroom, but could not find the word. She tried several times, until I helped and she confirmed. I realized that I can understand a lot of what she says because I look at the context more than hearing her words. I anticipate her meaning by looking at her gestures. Sometimes it works, some other times it doesn't. I wondered if I was being of help or whether I was hindering her progress.
I found a paper sol left for me that I feel would be useful for everyone who visits Jan. It is a series of suggestions and definitions of what is Jan struggling with. I will copy the contents in the next few blogs. This may be more useful than my ranting about what I see happening with Jan. By the way, Sharon left a couple of pages with a journal of her visits with Jan. Thanks! I think everyone should write a couple of lines in Jan's binder which she keeps in her bag. If visiting, ask her for her binder.
Here is the first instalment of the info package:
&^&^&^&^&^&^&^&^&^&^&^&^&^&^&^&^&&^&^&^&^
UNDERSTANDING APHASIA (I have applied the text to Jan)
-Aphasia is a language disorder in which Jan's capacity to read, write, speak or understand the speech of others is impaired.
-Aphasia occurred when the language centre of Jan's brain was damaged as a result of her acquired brain injury (her surgery).
-Jan still have her intelligence and creativity intact. She knows what she wants to say but has trouble getting the words out and making sense of the words she hears or sees.
-Not two individuals with Aphasia are alike and therefore, recovery patterns are unique and unpredictable.
-Aphasia can occur on its own, but in Jan’s case, it occurred also with mild Apraxia of speech (her speaking process is jumbled), and possibly some Dysarthria (weakness of the speech muscles) and difficulty with memory and word finding.
-Communication problems as a result of Aphasia can affect Jan’s well-being and self-confidence. Sometimes, she may feel depressed, upset, frustrated, bored, confused, and angry. When she is rested she seems to be in good spirit, but becomes tired quickly.
-Jan’s Aphasia affects the whole family.
There are more that 40 thousand people in Ontario affected by Aphasia.
Till the next,
-Fede
We went for a walk around the building and then to the office of Sol, her speech therapist. I asked her about her name: Soledad Silencieux, a combination of Spanish and French: Loneliness Silent. Jan thought that it was very appropriate because Sol is a reserved person who listens more than talk. While we were waiting, one of Sol colleagues came out and greeted Jan, Jan wanted to go the washroom and tried to ask where was the washroom, but could not find the word. She tried several times, until I helped and she confirmed. I realized that I can understand a lot of what she says because I look at the context more than hearing her words. I anticipate her meaning by looking at her gestures. Sometimes it works, some other times it doesn't. I wondered if I was being of help or whether I was hindering her progress.
I found a paper sol left for me that I feel would be useful for everyone who visits Jan. It is a series of suggestions and definitions of what is Jan struggling with. I will copy the contents in the next few blogs. This may be more useful than my ranting about what I see happening with Jan. By the way, Sharon left a couple of pages with a journal of her visits with Jan. Thanks! I think everyone should write a couple of lines in Jan's binder which she keeps in her bag. If visiting, ask her for her binder.
Here is the first instalment of the info package:
&^&^&^&^&^&^&^&^&^&^&^&^&^&^&^&^&&^&^&^&^
UNDERSTANDING APHASIA (I have applied the text to Jan)
-Aphasia is a language disorder in which Jan's capacity to read, write, speak or understand the speech of others is impaired.
-Aphasia occurred when the language centre of Jan's brain was damaged as a result of her acquired brain injury (her surgery).
-Jan still have her intelligence and creativity intact. She knows what she wants to say but has trouble getting the words out and making sense of the words she hears or sees.
-Not two individuals with Aphasia are alike and therefore, recovery patterns are unique and unpredictable.
-Aphasia can occur on its own, but in Jan’s case, it occurred also with mild Apraxia of speech (her speaking process is jumbled), and possibly some Dysarthria (weakness of the speech muscles) and difficulty with memory and word finding.
-Communication problems as a result of Aphasia can affect Jan’s well-being and self-confidence. Sometimes, she may feel depressed, upset, frustrated, bored, confused, and angry. When she is rested she seems to be in good spirit, but becomes tired quickly.
-Jan’s Aphasia affects the whole family.
There are more that 40 thousand people in Ontario affected by Aphasia.
Till the next,
-Fede
Wednesday, April 26, 2006
Progress
I brought some fajita food with me to the appointment I had with Jan to be there for supper. She was standing by the window, looking a the place where I usually park on Broadway. When she saw me, she waved. I could see a smile of satisfaction from the park.
We had a happy time during dinner. She is more coherent in her statements. She can choose the right words more and more, and when she can't, she will use other ways of communicating the idea. Lateral thinking? She's got it! She is doing a tremendous effort to overcome the expressive Aphasia and today I could see that the energy she puts in a one hour conversation is the equivalent of four or five hours talking no-stop for most of us. But you know Jan, she will not take no for an answer. She will push herself as far as she can go.
After dinner, we went for a long walk in several of the floors, until we were unceremoniously asked to vacate the premises in the second floor, because it was closed now to the public. We both laughed a the contradiction, because there are many signs on the wall indicating that the hallways are for the public, they are for walking, everyone is welcome. None of them indicated time restrictions.
We went to the TV area in her floor. It was deserted because cable TV was not working,so we played Scrabble. She is good! The doctor came at this point and told Jan: I know how hard you are working. Don't give up!.
Please enter your comments in her binder. Now she will be working on a book about her life. Talk to her about big events in the past, experiences you shared, this is the talk that is healing her brain.
She still has more to go, but be patient and write your impressions in her binder and then help her write what you share in common. If you have pictures, bring them to include them in the book.
And this is all I have to say about that....
-Fede
We had a happy time during dinner. She is more coherent in her statements. She can choose the right words more and more, and when she can't, she will use other ways of communicating the idea. Lateral thinking? She's got it! She is doing a tremendous effort to overcome the expressive Aphasia and today I could see that the energy she puts in a one hour conversation is the equivalent of four or five hours talking no-stop for most of us. But you know Jan, she will not take no for an answer. She will push herself as far as she can go.
After dinner, we went for a long walk in several of the floors, until we were unceremoniously asked to vacate the premises in the second floor, because it was closed now to the public. We both laughed a the contradiction, because there are many signs on the wall indicating that the hallways are for the public, they are for walking, everyone is welcome. None of them indicated time restrictions.
We went to the TV area in her floor. It was deserted because cable TV was not working,so we played Scrabble. She is good! The doctor came at this point and told Jan: I know how hard you are working. Don't give up!.
Please enter your comments in her binder. Now she will be working on a book about her life. Talk to her about big events in the past, experiences you shared, this is the talk that is healing her brain.
She still has more to go, but be patient and write your impressions in her binder and then help her write what you share in common. If you have pictures, bring them to include them in the book.
And this is all I have to say about that....
-Fede
Tuesday, April 25, 2006
The waiting time
Jan was watching television when I arrived. She had her walker by her side. When she saw me coming out of the elevator, she stood up, walked about 5 to 8 meters without any help and said: where were you? She then, grabbed my arm and walked back to the chair. I was very impressed. She told me that she had learned some important things today from one of the therapists about walking straigt and this helped her a lot.
She showed signs of a short memory functioning well when she told me about the visit of Louise and her parents, about her classes and her version of why several of her neighbours are there. One of her roomates talked to about five different people for almost two hours non-stop! Jan has a keen sense of humour and laughs more often now. Maybe she will become a writer when she comes back home and write good comedy. For some reason, life was hilarious to her.
She has been practicing writing in her binder, but I noticed that visitors are not writing their impressions on Jan's progress or the words that she needs to learn. Remember that her rehab is everyone's job.
She went to bed at 7:55pm.
-Fede
She showed signs of a short memory functioning well when she told me about the visit of Louise and her parents, about her classes and her version of why several of her neighbours are there. One of her roomates talked to about five different people for almost two hours non-stop! Jan has a keen sense of humour and laughs more often now. Maybe she will become a writer when she comes back home and write good comedy. For some reason, life was hilarious to her.
She has been practicing writing in her binder, but I noticed that visitors are not writing their impressions on Jan's progress or the words that she needs to learn. Remember that her rehab is everyone's job.
She went to bed at 7:55pm.
-Fede
Part of the process
QUARTERLY
On May 10 Jan will have been away from home a full quarter. But does it really make a difference whether it is one day, or one week or one quarter? Separation under any circumstances is always painful, it is a loss, even if it is temporary. Nevertheless, I am beginning to see absence from Jan's perspective. She asked me:
What is the purpose of pain?
Then, before I could reply anything, she said:
Pain is to show you the money (how much it costs) to live or to love.
During the weekend she had been talking about the same theme: without any opposition, any gravity or any weight our muscles would atrophy; without pain, we could not understand love, peace, growth, happiness. It is not an end in itself, it is not a deviation from the path, it is just part of the process. It does not have anything to do with fairness. It just is.
Her shoulder and right arm are in pain constantly. A low intensity pain that can be put in the background for a while, but once in a while bites as a reminder of its existence. The healing in the brain brings headaches. The absence from home that is making her heart grow fonder...
We were playing cards tonight; Jan was laughing and grimacing at the same time -the frozen shoulder was a hindrance but not a total barrier for her to enjoy the evening. For one second, life seemed normal. When the nurse came to check her vitals I realized we were in a hospital room and Jan was in a process of rehabilitation.
Jan told me she would be ready on time and I have no reason to disbelieve her.
-Fede
On May 10 Jan will have been away from home a full quarter. But does it really make a difference whether it is one day, or one week or one quarter? Separation under any circumstances is always painful, it is a loss, even if it is temporary. Nevertheless, I am beginning to see absence from Jan's perspective. She asked me:
What is the purpose of pain?
Then, before I could reply anything, she said:
Pain is to show you the money (how much it costs) to live or to love.
During the weekend she had been talking about the same theme: without any opposition, any gravity or any weight our muscles would atrophy; without pain, we could not understand love, peace, growth, happiness. It is not an end in itself, it is not a deviation from the path, it is just part of the process. It does not have anything to do with fairness. It just is.
Her shoulder and right arm are in pain constantly. A low intensity pain that can be put in the background for a while, but once in a while bites as a reminder of its existence. The healing in the brain brings headaches. The absence from home that is making her heart grow fonder...
We were playing cards tonight; Jan was laughing and grimacing at the same time -the frozen shoulder was a hindrance but not a total barrier for her to enjoy the evening. For one second, life seemed normal. When the nurse came to check her vitals I realized we were in a hospital room and Jan was in a process of rehabilitation.
Jan told me she would be ready on time and I have no reason to disbelieve her.
-Fede
Monday, April 24, 2006
Foggy and rainy
Perfect weekend to just cuddle up, get the popocorn, drinks and good movies, and relax.
Jan did most of this, of course. I had to go to a Board meeting all day Saturday, while Jon enjoyed a couple of movies. Thanks to Omar and David for hanging out with Jan until I came back.
We did together some cooking, laundry and ironing (she supervised closely) and in the afternoon we went food shopping. She was quite overwhelmed this time by the visit to the food store and became upset for a while in the trip back home. She said that she had trouble choosing between so many options, problem solving became a difficult proposition. What is a pleasure for some -having many options to choose from, for her was an overload-
We had a couple of deep conversations about the future, hers and mine. What should we do, where should we live, how can we plan for June, when she will be at home. She will still need help in some activities and she cannot drive. In all, she remains very optimistic and confident that all this has a clear meaning and will result in growth and enhancement of our lives.
We went back to the hospital on Sunday night, after a nice dinner at home. She enjoyed the rice and teriyaki chicken a la "Mexican". Sometimes I think Jan and Omar are just too gracious and don't tell me what they really think of my cooking, well, too late for a career change.
-Fede
Jan did most of this, of course. I had to go to a Board meeting all day Saturday, while Jon enjoyed a couple of movies. Thanks to Omar and David for hanging out with Jan until I came back.
We did together some cooking, laundry and ironing (she supervised closely) and in the afternoon we went food shopping. She was quite overwhelmed this time by the visit to the food store and became upset for a while in the trip back home. She said that she had trouble choosing between so many options, problem solving became a difficult proposition. What is a pleasure for some -having many options to choose from, for her was an overload-
We had a couple of deep conversations about the future, hers and mine. What should we do, where should we live, how can we plan for June, when she will be at home. She will still need help in some activities and she cannot drive. In all, she remains very optimistic and confident that all this has a clear meaning and will result in growth and enhancement of our lives.
We went back to the hospital on Sunday night, after a nice dinner at home. She enjoyed the rice and teriyaki chicken a la "Mexican". Sometimes I think Jan and Omar are just too gracious and don't tell me what they really think of my cooking, well, too late for a career change.
-Fede
Saturday and Sunday
Time was really fuild this weekend in more ways than one. Fog and rain framed another weekend Jan spent at home. This one was without any visitors! We re not complaining, it was great to just relax, watch some videos, just talk and when she felt like she had enough, she just took a nap.
I realized this weekend how involved is to have Jan at home. She requires constant company when she is awake, although she is becoming more and more independent by the day. She no longer waits for help when she needs something, she just starts walking, holding onto walls, pieces of furniture, or her walker if it is at hand, to get to the place she wants. I noticed that she dresses herself almost completely, except for a few things she needs to practice doing alone like putting her hair in a pony tail or tieing her shoe laces. I tried for about 15 minutes and could not do it. She is fiercely independent, but at the same time, she enjoys the attention when she ask for it. We ate pounds of chocolates and paid the consequences...
Although her thinking is becoming sharper, she still struggles with the Aphasia. Sometimes, whe the communications deals with concrete items, she is very good; when communication deals with abstract ideas then, she has more trouble saying what she is thinking. When she is tired, her speech is very slurred and she gets really frustrated.
On Sunday we sent food shoping, she became overwhelmed and started crying in the store. It took a while for her to calm down, and I learned to not ask two questions in a row. Thee experience was emotionally draining for both of us. this raised a question in my mind about whether the aneurysm had some impact on her emotional control centre.
She was back on the hospital on time to brush her theeth and go to bed. She seemed more relaxed to be back in a familiar environment. Several times she said earlier that she was going back home...(meaning the hospital).
Well, we enjoyed the rain as much as the plants. I hope you had a terrific weekend too.
-Fede
I realized this weekend how involved is to have Jan at home. She requires constant company when she is awake, although she is becoming more and more independent by the day. She no longer waits for help when she needs something, she just starts walking, holding onto walls, pieces of furniture, or her walker if it is at hand, to get to the place she wants. I noticed that she dresses herself almost completely, except for a few things she needs to practice doing alone like putting her hair in a pony tail or tieing her shoe laces. I tried for about 15 minutes and could not do it. She is fiercely independent, but at the same time, she enjoys the attention when she ask for it. We ate pounds of chocolates and paid the consequences...
Although her thinking is becoming sharper, she still struggles with the Aphasia. Sometimes, whe the communications deals with concrete items, she is very good; when communication deals with abstract ideas then, she has more trouble saying what she is thinking. When she is tired, her speech is very slurred and she gets really frustrated.
On Sunday we sent food shoping, she became overwhelmed and started crying in the store. It took a while for her to calm down, and I learned to not ask two questions in a row. Thee experience was emotionally draining for both of us. this raised a question in my mind about whether the aneurysm had some impact on her emotional control centre.
She was back on the hospital on time to brush her theeth and go to bed. She seemed more relaxed to be back in a familiar environment. Several times she said earlier that she was going back home...(meaning the hospital).
Well, we enjoyed the rain as much as the plants. I hope you had a terrific weekend too.
-Fede
Friday, April 21, 2006
Family meeting
There was a meeting today between all the team (the physician, the speech language pathologyst, the occupational therapist, the physiotherapist, the social worker and the nurse on one side, and the family (the parents, the siblings, and the the new members of the clan) on the other side. The meeting was to inform the family of Jan's Prognosis to date. In brief:
-Her physio is going well. She is progressing rapidly. She will be able to walk with minimal aids, in the long term, probably with a cane. She needs to develop strength in both the right arm and leg. She tends to compensate with the left.
-The occupational therapist said that it is possible that she will not be able to teach in a classroom setting. A combination of verbal, motor and speech conections were affected by the surgery. She will regain much of these functions, but not the the previous level. This will be the result of long therapy.
-Jan has a high cognitive functioning which helps her to compensate and develop faster her language skills. She is a problem solver, if she gets stuck in her speech she will find another way. The SLT reminded us that communication is a two way street, we have to assist in the process when Jan gets stcuk. Steve will publish some of the ideas given. There is an attempt to give Jan some music therapy.
-The SW indicated that Jan is scheduled to vacate the premises on May 31st. After that, she will continue in out-patient therapy.
The majority of the team memebrs are very young (late 20s early 30s). the meeting was more informal than I expected, but it was a good chance to put for the first time all the pieces together.
The doctor told Jan that he was sending a letter to the Ministry of Transportation rescinding Jan's driver's license.
Lots of loss of independence and mobility for Jan. The result of the meeting was some hope for the skills she will get back, some realism about what will not come back, and a lot of faith from Jan's part that all of this is under control and was supposed to happen anyway.
Jan is home for the weekend.
-Fede
-
-Her physio is going well. She is progressing rapidly. She will be able to walk with minimal aids, in the long term, probably with a cane. She needs to develop strength in both the right arm and leg. She tends to compensate with the left.
-The occupational therapist said that it is possible that she will not be able to teach in a classroom setting. A combination of verbal, motor and speech conections were affected by the surgery. She will regain much of these functions, but not the the previous level. This will be the result of long therapy.
-Jan has a high cognitive functioning which helps her to compensate and develop faster her language skills. She is a problem solver, if she gets stuck in her speech she will find another way. The SLT reminded us that communication is a two way street, we have to assist in the process when Jan gets stcuk. Steve will publish some of the ideas given. There is an attempt to give Jan some music therapy.
-The SW indicated that Jan is scheduled to vacate the premises on May 31st. After that, she will continue in out-patient therapy.
The majority of the team memebrs are very young (late 20s early 30s). the meeting was more informal than I expected, but it was a good chance to put for the first time all the pieces together.
The doctor told Jan that he was sending a letter to the Ministry of Transportation rescinding Jan's driver's license.
Lots of loss of independence and mobility for Jan. The result of the meeting was some hope for the skills she will get back, some realism about what will not come back, and a lot of faith from Jan's part that all of this is under control and was supposed to happen anyway.
Jan is home for the weekend.
-Fede
-
Thursday, April 20, 2006
In the nest
Jan identifies her soul with an eagle. Eagles represent for her: courage, speed, power, great daring, dependability, strength, faithfulness majesty, tenderness, pride. Her favourite verse is Isaiah 40:30 "They will rise up like an eagle in the sky"
The Jan I saw today was tired, tearful, her speech was garbled and hard to understand. After a couple of sentences her head just hung between her shoulders. She had slept most of the day, and had been up most of the night. What a contrast with the Jan I had seen yesterday. Nevertheless, is the same Jan. Even eagles go to their nests and rest, I thought, and suspended my judgements.
We went to the park in front of the hospital. The sunshine had a positive effect on her. She became more alive. Later in the evening, a singer and her piano partner came to the auditorium to give a show to the patients. Jan loved the music and the singing, also the junk food the volunteers offered. She was in bed by 7:45PM and I was told that it was time to pick myself up and to go home.
"I don't have anything to talk about tonight".
She complained of pain in her right side of the body (the one with limited movement). I asked her if the pain was a good sign that it was awakening. She said,
"that's a nice idea. That''s how I feel"
I asked her if she thought it was unfair all this pain and limitations. It was not supposed to be this way. She replied:
"But, this is exactly the way it is supposed to be. There is a reason for this, I know it, but, I don't have the words to tell you now" (she pointed to her mounth and then to the left side of her head)
She opened a card that a dear friend mailed to her: a man sitting under a tree at sunset, a legend at the bottom read: waiting for a miracle. When she read the text inside, asking now and then what some words meant, she said full with laughter:
That is what I believe!" (the unseen power of God working in her cells, re-connecting nerves...)
Today Jan was tired, tearful, in pain, but her determination and faith were the same.
-Fede
The Jan I saw today was tired, tearful, her speech was garbled and hard to understand. After a couple of sentences her head just hung between her shoulders. She had slept most of the day, and had been up most of the night. What a contrast with the Jan I had seen yesterday. Nevertheless, is the same Jan. Even eagles go to their nests and rest, I thought, and suspended my judgements.
We went to the park in front of the hospital. The sunshine had a positive effect on her. She became more alive. Later in the evening, a singer and her piano partner came to the auditorium to give a show to the patients. Jan loved the music and the singing, also the junk food the volunteers offered. She was in bed by 7:45PM and I was told that it was time to pick myself up and to go home.
"I don't have anything to talk about tonight".
She complained of pain in her right side of the body (the one with limited movement). I asked her if the pain was a good sign that it was awakening. She said,
"that's a nice idea. That''s how I feel"
I asked her if she thought it was unfair all this pain and limitations. It was not supposed to be this way. She replied:
"But, this is exactly the way it is supposed to be. There is a reason for this, I know it, but, I don't have the words to tell you now" (she pointed to her mounth and then to the left side of her head)
She opened a card that a dear friend mailed to her: a man sitting under a tree at sunset, a legend at the bottom read: waiting for a miracle. When she read the text inside, asking now and then what some words meant, she said full with laughter:
That is what I believe!" (the unseen power of God working in her cells, re-connecting nerves...)
Today Jan was tired, tearful, in pain, but her determination and faith were the same.
-Fede
Wednesday, April 19, 2006
Short and sweet
My visit today was really short and brief. I arrived in the morning just as she was going to physiotherapy. So, I sat on the side watching her go around the gym with her right hand on a table on wheels. Practicing balance and walking by herself. She had done some balancing and coordination exercises. I could see the big improvements in her mobility.
She still drags that walker around. When she finished, she put her bag on one of the handles and off she went to the next session with the occupational therapist. We visited a couple of minutes on the way and then I had to go back to work.
During the pysio, she concentrated hard on the tasks she was asked to do. Like and athlete, psyching herself up to go for a record. But of course, Jan always does everything with the same intensity. There is a streak of fearlessness and determination that must come from her core. Daring, courageous, but tender at the same time. Jan, the woman with the majestic soul of an eagle.
We kissed good-bye and off she went to her next session, greeting everyone on her way: Hi there... Hi here... Hi. She looked so casual and relaxed, as if she was walking in the park. I felt glad to know this woman. For a moment -as it often happens to me-, I forgot that she is a survivor of a SAH aneurysm, that she had been in a coma for two weeks, that six weeks ago she couldn't talk, or walk.
I could hear her heart singing: "we shall overcome".
She still drags that walker around. When she finished, she put her bag on one of the handles and off she went to the next session with the occupational therapist. We visited a couple of minutes on the way and then I had to go back to work.
During the pysio, she concentrated hard on the tasks she was asked to do. Like and athlete, psyching herself up to go for a record. But of course, Jan always does everything with the same intensity. There is a streak of fearlessness and determination that must come from her core. Daring, courageous, but tender at the same time. Jan, the woman with the majestic soul of an eagle.
We kissed good-bye and off she went to her next session, greeting everyone on her way: Hi there... Hi here... Hi. She looked so casual and relaxed, as if she was walking in the park. I felt glad to know this woman. For a moment -as it often happens to me-, I forgot that she is a survivor of a SAH aneurysm, that she had been in a coma for two weeks, that six weeks ago she couldn't talk, or walk.
I could hear her heart singing: "we shall overcome".
Tuesday, April 18, 2006
Shut up and learn to live without fear
Jan never ceases to amaze me. Just before she went to sleep, she shared with me some thoughts of her journey in the past two and a half months. I left convinced that she is a living parable of a life overflowing with newness. Just before I left she said in that special accent: What would you feel if you could live a full week without fear? Imagine!
I got to my daily visit late only to find that Jan was standing by the window in another room! They are doing some deep cleaning in her room and all three tenants were evicted to various places. I couldn't find the nurse to find out if this is a permanent move. She is only a couple of doors up from where she was (new room is 318?) It is a semi-private arrangement, so there is a little more privacy, and it is right in front of the washroom. We went for a walk and ended in the auditorium, in a drawing class. She made a drawing of someone looking from the sky to the sea. Her laughter added extra colour to the drawing. Shortly after, she decided to go back to her room. She said that the day had been very busy for her. She had the "funnies" on her right side. I observed the routine: getting her toothbrush, dragging the walker, a quick visit to the toilet and a face wash. Then, changing into her pajamas and getting into bed. I have learned not to assist her in these activities unless I am invited. It is one of those small areas where she can have some control in her life and she treasures it very much.
This is the point when our real conversation began. I read the story of Peter and his colleagues lending their boat to Jesus as a pulpit. Then, the inexplicable haul of fish and his reaction: I am not worthy, and the answer from the Master: "there is no reason to be afraid". Jan asked me what was I feeling right at that moment. I told her that I struggled with feelings of inadequacy, doubt, guilt, fear, frustration because I couldn't help her or do something valuable for her; I told her that, I would gladly give her my right hand... she just said: Shut up! don't you see that you are full of fear? this is exactly the kind of lies that wreck our lives, our capacity to be happy, to live freely, believing that there is no reason to feel guilt or fear. Look at me, I am not complete, but, I am not afraid. I know that this happened for a reason, and I know that I am happier now because of what I have learnt... she went on for another half an hour. At the end, I was crying because what she was saying was true: I had fallen into faulty thinking and was probably trapped in feeling sorry for myself, loosing perspective and being plainly afraid for her, for me, for us. But I was also crying because I could hear my Jan speaking exactly the way she did when I met her. Other than a few broken links in her speech, there she was, with an intact mind and a stronger spirit.
My friends, I was totally speechless. She had touched me right in the core of my soul. So effortlessly, she said, don't you realize that the best gift you could ever give me is your presence here, now. That I spend the whole day waiting for your visit? You could not buy anything that has more value than this: that you are at my side right now. What would you feel if you could live a week without fear? Will you start tomorrow? Is it a deal?
I left thankful, with a deep understanding of what is valuable in life.
-Fede
I got to my daily visit late only to find that Jan was standing by the window in another room! They are doing some deep cleaning in her room and all three tenants were evicted to various places. I couldn't find the nurse to find out if this is a permanent move. She is only a couple of doors up from where she was (new room is 318?) It is a semi-private arrangement, so there is a little more privacy, and it is right in front of the washroom. We went for a walk and ended in the auditorium, in a drawing class. She made a drawing of someone looking from the sky to the sea. Her laughter added extra colour to the drawing. Shortly after, she decided to go back to her room. She said that the day had been very busy for her. She had the "funnies" on her right side. I observed the routine: getting her toothbrush, dragging the walker, a quick visit to the toilet and a face wash. Then, changing into her pajamas and getting into bed. I have learned not to assist her in these activities unless I am invited. It is one of those small areas where she can have some control in her life and she treasures it very much.
This is the point when our real conversation began. I read the story of Peter and his colleagues lending their boat to Jesus as a pulpit. Then, the inexplicable haul of fish and his reaction: I am not worthy, and the answer from the Master: "there is no reason to be afraid". Jan asked me what was I feeling right at that moment. I told her that I struggled with feelings of inadequacy, doubt, guilt, fear, frustration because I couldn't help her or do something valuable for her; I told her that, I would gladly give her my right hand... she just said: Shut up! don't you see that you are full of fear? this is exactly the kind of lies that wreck our lives, our capacity to be happy, to live freely, believing that there is no reason to feel guilt or fear. Look at me, I am not complete, but, I am not afraid. I know that this happened for a reason, and I know that I am happier now because of what I have learnt... she went on for another half an hour. At the end, I was crying because what she was saying was true: I had fallen into faulty thinking and was probably trapped in feeling sorry for myself, loosing perspective and being plainly afraid for her, for me, for us. But I was also crying because I could hear my Jan speaking exactly the way she did when I met her. Other than a few broken links in her speech, there she was, with an intact mind and a stronger spirit.
My friends, I was totally speechless. She had touched me right in the core of my soul. So effortlessly, she said, don't you realize that the best gift you could ever give me is your presence here, now. That I spend the whole day waiting for your visit? You could not buy anything that has more value than this: that you are at my side right now. What would you feel if you could live a week without fear? Will you start tomorrow? Is it a deal?
I left thankful, with a deep understanding of what is valuable in life.
-Fede
Monday, April 17, 2006
Ice cream at High Park
Sorry we missed a couple of important visits (Anne and Jody+family). The hospital was empy today. A skeleton crew and very few patients. Jan and I decided to break the boredom of looking at the same walls and hearing the screeching sound of the nurses' intercom. We went for a walk and ice cream at High Park. We went to the same bench where we sat the first time we went out. It was a refreshing trip back in memory lane and Jan did recalled a lot of details.
She was in a better frame of mind today. We had good conversation and sunshine. It felt almost back to normal.
I left Sharon visiting with Jan.
-Fede
She was in a better frame of mind today. We had good conversation and sunshine. It felt almost back to normal.
I left Sharon visiting with Jan.
-Fede
Sunday BBQ
Thanks for the nice picture Steve. It was indeed a nice family gathering, almost perfect.
Today, was a relaxed day for Jan. Slept-in until mid-morning. Listen to music and talked to Farah and Soco. Later in the afternoon, Tony, Louise, and the children came for a visit. We decided to have a barbeque. Jan was happy that they could stay longer, although, she looked very tired at the table and her speech was hard to understand.
She did a couple of new things she had not done before: she took four or five steps without any support to get close to the table, then turned around and went back to her chair. She also indicated clearly that she does not want help to do routine activities like putting her shoes or a sweater on, unless she asks for help. Her independent spirit will be very valuable in her rehabilitation.
Her energy level was low. There seems to be a connection between the amount of stimulation she gets and the length of time her energy will last. A note from the speech therapist indicated that the best conversations for Jan are between her and one or two other people. Also, it is best when there is only one conversation happening, and that it involves her. As many of you know, it is also best to sit to her left if you are talking to her, otherwise, you will be a "voice" from somewhere, because of what the physiotherapist calls "right neglect" (she does not pay attention to things, sounds or people on her right, because she does not see them). If you are talking to her from the right and she does not answer you, it is because at this point in her rehabilitation, you are not there.
Be prepared to keep these tips in mind because Jan will not stay at the hospital forever; when she comes home, it is going to be up to mainly family and friends the ones who will continue reinforcing and building upon what the therapists are doing now. Jan’s rehabilitation is something that will take time. Medical staff always talks about 1 year as the time that is required for the brain to heal from an acquired injury like the one Jan has. I asked the social worker about the classifications. He said that car or other accident victims are classified as traumatic brain injuries, injuries from operations or haemorrhages are acquired. They are not the same as stroke victims, and the institutions that provide rehabilitation are different. Such specialization is dizzying, but ensures the best rehabilitation program for Jan.
She cannot stay for more than two nights away or she would be discharged automatically. So, we went back on Sunday at about 7PM. Her room was empty; most patients were gone for the weekend. There was a bit of sadness going back, a sour-sweet feeling. She was not in the best shape, but there was also some comfort in the familiarity and strict routines of the place. The nurse came and acknowledged Jan had arrived –a kind of check-in. She would come back to give Jan her medications. I felt like a student in junior high, where you have to ask permission for almost everything…
Jan is making such progress that probably her days as an in-patient at Bridgepoint are numbered. In a month or two she may be strolling at home, and continuing the hard work to recover her speech and voice, and to continue believing for the recovery of the fine movement in her right hand.
Your help will be needed and appreciated then. Be ready to be asked. I will be posting specific needs and if you have the skills, competencies, time or mobility, please let me know, not right now but then.
Today, was a relaxed day for Jan. Slept-in until mid-morning. Listen to music and talked to Farah and Soco. Later in the afternoon, Tony, Louise, and the children came for a visit. We decided to have a barbeque. Jan was happy that they could stay longer, although, she looked very tired at the table and her speech was hard to understand.
She did a couple of new things she had not done before: she took four or five steps without any support to get close to the table, then turned around and went back to her chair. She also indicated clearly that she does not want help to do routine activities like putting her shoes or a sweater on, unless she asks for help. Her independent spirit will be very valuable in her rehabilitation.
Her energy level was low. There seems to be a connection between the amount of stimulation she gets and the length of time her energy will last. A note from the speech therapist indicated that the best conversations for Jan are between her and one or two other people. Also, it is best when there is only one conversation happening, and that it involves her. As many of you know, it is also best to sit to her left if you are talking to her, otherwise, you will be a "voice" from somewhere, because of what the physiotherapist calls "right neglect" (she does not pay attention to things, sounds or people on her right, because she does not see them). If you are talking to her from the right and she does not answer you, it is because at this point in her rehabilitation, you are not there.
Be prepared to keep these tips in mind because Jan will not stay at the hospital forever; when she comes home, it is going to be up to mainly family and friends the ones who will continue reinforcing and building upon what the therapists are doing now. Jan’s rehabilitation is something that will take time. Medical staff always talks about 1 year as the time that is required for the brain to heal from an acquired injury like the one Jan has. I asked the social worker about the classifications. He said that car or other accident victims are classified as traumatic brain injuries, injuries from operations or haemorrhages are acquired. They are not the same as stroke victims, and the institutions that provide rehabilitation are different. Such specialization is dizzying, but ensures the best rehabilitation program for Jan.
She cannot stay for more than two nights away or she would be discharged automatically. So, we went back on Sunday at about 7PM. Her room was empty; most patients were gone for the weekend. There was a bit of sadness going back, a sour-sweet feeling. She was not in the best shape, but there was also some comfort in the familiarity and strict routines of the place. The nurse came and acknowledged Jan had arrived –a kind of check-in. She would come back to give Jan her medications. I felt like a student in junior high, where you have to ask permission for almost everything…
Jan is making such progress that probably her days as an in-patient at Bridgepoint are numbered. In a month or two she may be strolling at home, and continuing the hard work to recover her speech and voice, and to continue believing for the recovery of the fine movement in her right hand.
Your help will be needed and appreciated then. Be ready to be asked. I will be posting specific needs and if you have the skills, competencies, time or mobility, please let me know, not right now but then.
Sunday, April 16, 2006
Easter Barbeque
And a lovely time was had by all! This is Jan enjoying the great outdoors in her own backyard yesterday. (She wanted to look directly at me while I was taking this picture, but she is also self-conscious about pictures that show the side of her head where the bone is still out.)
The barbeque Fede mentioned below was a great success. Everyone--everyone!-- helped in some way in preparing and cooking the food, which was delicious.
The one sour note for Jan during the meal was that the slice of onion she asked for to eat with her hamburger was much too strong tasting, and this brought her to anguished tears for a brief time. We quickly removed the onion from her plate after the first bite, and that helped her to calm down. I am slowly getting used to the "hyper-emotional" responses such incidents cause in Jan these days, but it is still painful to watch and hear her in that state. It is all part of the process.
Jan was happy to see everyone during the visit, showing delight each time someone came through the door. She laughed in surprise when the Easter Bunny (me, in this case) showed up with a chocolate bunny for her.
For me, the highlight of the whole visit was the guitar duet played by Jan and Fede. They sat side by side with the guitar between them, so that Fede could strum, while Jan played the frets to produced the cords. And the cords she played were absolutely perfect, played without hesitation! Even her mouth worked correctly when she decided to change keys in one song: "I think in A... no, I'll try in G".
We're all aware of the whole left-brain/right-brain thing. This was a marvelous demonstration. Her right-brain, the artistic side, suffered no damage from her injury, and is clearly working perfectly. What a thrill it was to see and hear.
Happy Easter to all.
-Steve
Saturday, April 15, 2006
Easter Saturday
Jan was up at 6am, she saw that there was light and she was happy to get everyone going. This was the begining of the second day.
She enjoyed "molletes" for breakfast, and participated in some kitchen cleaning.
Her increased mobility has made this visit a lot more enjoyable for her and everyone else. She goes up the stairs with more certainty, with more control on the right leg. She now can take a few steps without any support. I walk behind, ready to hold her in case she trips, but she hasn't. Her conversation is clearer after eating or after sleeping. At noon we went food shoping, this time she was able to make it past the bread section. She walked almost 2/3 of the store, then just said she was tired and she was going to stay on the side while I finished the shopping.
Her conversations are engaging, although some people still have trouble understanding her because of a strong "cutney" (sp?) [Do you mean "Cockney"? -Steve] accent and the expressive aphasia in which she uses words that are similar but not the ones she wants to use.
In the afternoon Dad and Carol, Mom, and Steve came for a visit. To enjoy the lovely weather, we had a BBQ in the back porch. Omar, Farah and Maria were part of the group.
More stamina, more words, more mobility, more independence. Jan is moving steadily in her rehabilitation. She has, however, some doubts about her right hand. It is possible that she will not be able to regain all of the previous mobility, unless, of course, somehow The Lord gives her the impossible.
Continue to have a blessed weekend,
-Fede
She enjoyed "molletes" for breakfast, and participated in some kitchen cleaning.
Her increased mobility has made this visit a lot more enjoyable for her and everyone else. She goes up the stairs with more certainty, with more control on the right leg. She now can take a few steps without any support. I walk behind, ready to hold her in case she trips, but she hasn't. Her conversation is clearer after eating or after sleeping. At noon we went food shoping, this time she was able to make it past the bread section. She walked almost 2/3 of the store, then just said she was tired and she was going to stay on the side while I finished the shopping.
Her conversations are engaging, although some people still have trouble understanding her because of a strong "cutney" (sp?) [Do you mean "Cockney"? -Steve] accent and the expressive aphasia in which she uses words that are similar but not the ones she wants to use.
In the afternoon Dad and Carol, Mom, and Steve came for a visit. To enjoy the lovely weather, we had a BBQ in the back porch. Omar, Farah and Maria were part of the group.
More stamina, more words, more mobility, more independence. Jan is moving steadily in her rehabilitation. She has, however, some doubts about her right hand. It is possible that she will not be able to regain all of the previous mobility, unless, of course, somehow The Lord gives her the impossible.
Continue to have a blessed weekend,
-Fede
Friday, April 14, 2006
Easter Friday
The expression on some faces was of utmost astonishment. A mix of dropped jaws and warm smiles welcomed Jan to Runnymede's Friday service. It was 10:30AM. The best day for Jan since February 10.
The day began early. I joined her for breakfast (I brought my own coffee and muffin, of course). I had with me a couple of dresses and jackets so she could dress up to attend the service. She looked so elegant, but unfortunately I had forgotten some essentials, so, we had to drive back home. Jan was a bit nervous because of the trip to the church. She had a mix of anticipation and anxiety. On the one hand, she talked about the music with glee, but was anxious about being surrounded by so many people at once.
There was a persistent light rain when we arrived at the church. On the steps going up to the main door, Jan lost a shoe. Luckily, Martha and Marianne were arriving and gave us a hand. Linda was suprised. She had planned to visit Jan in the afternoon at the hospital, and here she was! We took our sits and the service began. Jan kept her eyes closed for most of the music. She was in seventh heaven. At some point we went to the front to deposit a pair of nails we were given at the entrance. Close friends came to greet her. What a show of love and a great warm welcome.
Linda came home later, just as I made a mistake in my communication with Jan, which sent her into a crying and screaming mode. She tought I had said something hurtful, while I couldn't understand what the was or what her need was. After a while, with Linda's help Jan was back to normal.
Farah and Soco arrived from Ottawa and prepared a delicious Sushi dinner. Thanks! The day ended with Jan trying to tell me the notes for playing in guitar some of her favourite songs. She hasn't lost a bit of her musical ear.
May the paradoxical story of Easter renew your souls just as ours were.
-Fede
The day began early. I joined her for breakfast (I brought my own coffee and muffin, of course). I had with me a couple of dresses and jackets so she could dress up to attend the service. She looked so elegant, but unfortunately I had forgotten some essentials, so, we had to drive back home. Jan was a bit nervous because of the trip to the church. She had a mix of anticipation and anxiety. On the one hand, she talked about the music with glee, but was anxious about being surrounded by so many people at once.
There was a persistent light rain when we arrived at the church. On the steps going up to the main door, Jan lost a shoe. Luckily, Martha and Marianne were arriving and gave us a hand. Linda was suprised. She had planned to visit Jan in the afternoon at the hospital, and here she was! We took our sits and the service began. Jan kept her eyes closed for most of the music. She was in seventh heaven. At some point we went to the front to deposit a pair of nails we were given at the entrance. Close friends came to greet her. What a show of love and a great warm welcome.
Linda came home later, just as I made a mistake in my communication with Jan, which sent her into a crying and screaming mode. She tought I had said something hurtful, while I couldn't understand what the was or what her need was. After a while, with Linda's help Jan was back to normal.
Farah and Soco arrived from Ottawa and prepared a delicious Sushi dinner. Thanks! The day ended with Jan trying to tell me the notes for playing in guitar some of her favourite songs. She hasn't lost a bit of her musical ear.
May the paradoxical story of Easter renew your souls just as ours were.
-Fede
Approval
For the last few days we have been anxiously waiting for a number of assessments to be completed, which the experts required before giving Jan permission to get a weekend pass. This just reminded me about how fragile is that situation we call freedom, that power to decide where to go, what to do, or what to think. Institutions can take it away in the name of safety, or fear, or love, or even faith in the blink of an eye. I admire Jan's determination to stick to the truth because it, inevitably leads her back to Jesus, her source of truth: "you shall know the truth, and the truth shal set you free".
Yes, we have been anxious, because we feared that permission would be denied. The "team" had argued that they still didn't know well Jan's physical or cognitive abilities to avoid danger or ask for help. So, the deal was that instead of only assessing her, I was also assessed on my capacity to take care of Jan and protect her. For those who know us some, this sounds a bit bizarre. But that's what you get when you open an institution:Institutionalized thinking, standarization of life, procedures, hierarchies and control. Jan's life suddenly becomes "another case". The individual seems to have little else to do in front of this wall of procedures, other than to fight for her freedom and dignity.
If you know Jan, you know she is a fighter. That is what she has been doing in the last few days. I admired Jan's logic before the aneurysm, I now admire her also for her determination to stand up and challenge the institution's shortsightedness in spite of the aphasia and apraxia. What a sight! There is Jan thinking a thousand miles and hour and her mouth going at 20 miles and hour and sometimes stalling, giving the wrong words or simply nodding in frustration. But don't be deceived by appearences, behind these communication barriers, Jan is the same fighting soul and brain, and now, probably stronger.
So, the "establishment" gave in to her vehement debates and persistence. She was not going to let them decide about where she was going to spend this special weekend. Way to go Jan!
But, I love Jan also for her spirituality and her deep connection with her feelings.
When I arrived after work, she was waiting in the main floor, looking out the window for me. I felt embraced by her anticipation for my arrival. She was annoyed that I was late and that I hadn't eaten supper. No matter, her love showed more than her annoyance, like the Spring sunshine, too bright to be concealed. We went to the cafeteria -now closed- and bought a handful of junk food from the machines, then went to the TV room in her floor and played scrabble for a while.
Jan is moving more freely with the help of a walker. Sometimes she stands up, walks for a few meters without any help, before she realizes that she needs the walker! She also puts her right hand carefully on the walker and clamps that hand to the handle. She is obviously trying to get that side moving. However, before going to bed, she said that all her right side is "tingling" and without much sensations except pain when handled roughly.
Jan is going into this Easter with a clear knowledge that she has gone through some sort of death -or near death- experience. However, her spirituality about death is not morbid, but rather hopeful, because, just as her Lord raised again, she is also hoping to stand up again, not some day in a far and away place, but here among her loved friends and family.
Have a blessed holiday, whatever you believe or do not believe.
-Fede
Yes, we have been anxious, because we feared that permission would be denied. The "team" had argued that they still didn't know well Jan's physical or cognitive abilities to avoid danger or ask for help. So, the deal was that instead of only assessing her, I was also assessed on my capacity to take care of Jan and protect her. For those who know us some, this sounds a bit bizarre. But that's what you get when you open an institution:Institutionalized thinking, standarization of life, procedures, hierarchies and control. Jan's life suddenly becomes "another case". The individual seems to have little else to do in front of this wall of procedures, other than to fight for her freedom and dignity.
If you know Jan, you know she is a fighter. That is what she has been doing in the last few days. I admired Jan's logic before the aneurysm, I now admire her also for her determination to stand up and challenge the institution's shortsightedness in spite of the aphasia and apraxia. What a sight! There is Jan thinking a thousand miles and hour and her mouth going at 20 miles and hour and sometimes stalling, giving the wrong words or simply nodding in frustration. But don't be deceived by appearences, behind these communication barriers, Jan is the same fighting soul and brain, and now, probably stronger.
So, the "establishment" gave in to her vehement debates and persistence. She was not going to let them decide about where she was going to spend this special weekend. Way to go Jan!
But, I love Jan also for her spirituality and her deep connection with her feelings.
When I arrived after work, she was waiting in the main floor, looking out the window for me. I felt embraced by her anticipation for my arrival. She was annoyed that I was late and that I hadn't eaten supper. No matter, her love showed more than her annoyance, like the Spring sunshine, too bright to be concealed. We went to the cafeteria -now closed- and bought a handful of junk food from the machines, then went to the TV room in her floor and played scrabble for a while.
Jan is moving more freely with the help of a walker. Sometimes she stands up, walks for a few meters without any help, before she realizes that she needs the walker! She also puts her right hand carefully on the walker and clamps that hand to the handle. She is obviously trying to get that side moving. However, before going to bed, she said that all her right side is "tingling" and without much sensations except pain when handled roughly.
Jan is going into this Easter with a clear knowledge that she has gone through some sort of death -or near death- experience. However, her spirituality about death is not morbid, but rather hopeful, because, just as her Lord raised again, she is also hoping to stand up again, not some day in a far and away place, but here among her loved friends and family.
Have a blessed holiday, whatever you believe or do not believe.
-Fede
Thursday, April 13, 2006
Angering Jan
In the last two days, both Sue and I have come under Jan's gun. Wow. In spite of knowing in our heads that this is part of where Jan is right now, it is still so hard to deal with. Fede, I know you have been experiencing this from time to time, and I now understand so much more how it hurts, and how hard one must try to remember it isn't really 'personal'.
While I was visiting Jan a couple of days ago, she told me she didn't know why she had to be in the hospital at all now. Why couldnt' she live at home and just come to the hospital for her therapy sessions? Jan's thinking--other than her ability to find the words--has seemed so normal lately that I had been lulled into believing she was more her true self than she is right now. So I casually and harmlessly (so I thought) mentioned that it would be a great deal of work and effort for Fede to have her at home right now, and that after all, it does take a lot of concentration to follow her speech--it can be very tiring!
I know, I know: looking back on what I said, I should have known better. As I said, I was lulled into expecting a 'normal' response like, "Well, that's true, it is a lot of work and maybe it's too early."
But what I got was a look of devastation, anger and tears that brought me to tears to see. I thought, "What have I done!?" And then came: "You should go now."
Fortunately, Martha walked into the room while I was trying to backpedal and explain what I had meant. (Thank you Martha!) She was able to talk a little to Jan and calm the hurt some.
And then Fede arrived and all four of us had a lively discussion, including Jan's sharing of a vivid dream, which Fede has mentioned below.
I'm interested--and a little frightened--to see how Jan will react to me when I next see her.
While I was visiting Jan a couple of days ago, she told me she didn't know why she had to be in the hospital at all now. Why couldnt' she live at home and just come to the hospital for her therapy sessions? Jan's thinking--other than her ability to find the words--has seemed so normal lately that I had been lulled into believing she was more her true self than she is right now. So I casually and harmlessly (so I thought) mentioned that it would be a great deal of work and effort for Fede to have her at home right now, and that after all, it does take a lot of concentration to follow her speech--it can be very tiring!
I know, I know: looking back on what I said, I should have known better. As I said, I was lulled into expecting a 'normal' response like, "Well, that's true, it is a lot of work and maybe it's too early."
But what I got was a look of devastation, anger and tears that brought me to tears to see. I thought, "What have I done!?" And then came: "You should go now."
Fortunately, Martha walked into the room while I was trying to backpedal and explain what I had meant. (Thank you Martha!) She was able to talk a little to Jan and calm the hurt some.
And then Fede arrived and all four of us had a lively discussion, including Jan's sharing of a vivid dream, which Fede has mentioned below.
I'm interested--and a little frightened--to see how Jan will react to me when I next see her.
-Steve
Jan in discussion with visitors, taken by Fede.
Wednesday, April 12, 2006
Snoozing
Vern and I went to visit Jan after work. On the way to the cafeteria we met Dr. Milani who invited us to his office. Jan and I discussd wiht him in detail our interest for a pass forthis weekend. He listened carefully, made a number of detailed questions and when he was satisfied that we are familiar with safety precautions for Jan he agreed to convey the message to the "team". They seem to be very keen about the safety of the patient, which makes me feel more trusting towards the hospital.
By this account, it looks like Jan will have a one or two day pass. We had planned going to Steve and Sue's with the rest of the family, but several of them are sick with a cold... louisegetwell, childrengetwell! we'll miss y'all. Jan is well and intends to stay that way.
You are more than welcomed to visit on Saturday, however, the doctor recommended to have small groups during the visit to give Jan a break. Just let me know when do you plan to come for a visit so we can stage all. Since David specializes in scheduling everyone to come at the same time, or fogetting to notify you, I suggest you remind him of the schedule via email. It think he is getting old... we may need to put him in a home... :)
Jan came to have a drink with us to the cafeteriam and then she beat the two of us playing cards while eating supper at the same time. During the conversation I felt asleep, and Vern dissapeared. Jan told me that I was snoring! How utterly embarrasing! Oh well...
Jan took a shower and then we read a couple chapters of Mark. She was very moved by the narrative. She was particularly interested in the part of "stay awake and pray".
Jan mentioned that her right side was feeling weird, tingling and too sensitive to the touch. Be gentle when you touch her on the right arm or shoulder... She continues searching for the right side. Today she was wondering whether this has been lost for good. We prayed and she felt asleep at about 8:15PM
During the following days her assessment will be completed and the team will have an idea of the length of time Jan needs to continue in rehabilitation. Some of it will be as inpatient and some will be as an outpatient. This will be an important day for both. Please continue your support in whichever way you have done it so far (meditation, prayers, visits, etc)
I made an appoitnment to see a therapists on Monday. It think I am bursting a the seams because of the stress... Thanks for your concern and loving support for both of us.
-Fede
By this account, it looks like Jan will have a one or two day pass. We had planned going to Steve and Sue's with the rest of the family, but several of them are sick with a cold... louisegetwell, childrengetwell! we'll miss y'all. Jan is well and intends to stay that way.
You are more than welcomed to visit on Saturday, however, the doctor recommended to have small groups during the visit to give Jan a break. Just let me know when do you plan to come for a visit so we can stage all. Since David specializes in scheduling everyone to come at the same time, or fogetting to notify you, I suggest you remind him of the schedule via email. It think he is getting old... we may need to put him in a home... :)
Jan came to have a drink with us to the cafeteriam and then she beat the two of us playing cards while eating supper at the same time. During the conversation I felt asleep, and Vern dissapeared. Jan told me that I was snoring! How utterly embarrasing! Oh well...
Jan took a shower and then we read a couple chapters of Mark. She was very moved by the narrative. She was particularly interested in the part of "stay awake and pray".
Jan mentioned that her right side was feeling weird, tingling and too sensitive to the touch. Be gentle when you touch her on the right arm or shoulder... She continues searching for the right side. Today she was wondering whether this has been lost for good. We prayed and she felt asleep at about 8:15PM
During the following days her assessment will be completed and the team will have an idea of the length of time Jan needs to continue in rehabilitation. Some of it will be as inpatient and some will be as an outpatient. This will be an important day for both. Please continue your support in whichever way you have done it so far (meditation, prayers, visits, etc)
I made an appoitnment to see a therapists on Monday. It think I am bursting a the seams because of the stress... Thanks for your concern and loving support for both of us.
-Fede
TUESDAY, APRIL 11, 2006
Steve and Martha were visiting when I arrived at Jan's room. She now has a new neighbor, an aboriginal lady from Toronto. So, the room is quite multicultural: am elderly lady from Eastern Europe, another lady from India, and Jan, from the remote woodlands of Orillia.. Jan is quite friendly wiht everyone of the neighbors, she seems to thrive in this in promptu community.
The doctor came to visit and we had a chance to talk about the weekend pass in more detail. He deferred the decision to the "team", in particular to the physio-therapist. It is good to see some changes from the time when the doctors decided everything, even when they didn't have the best data or first hand knowledge about the patient. He is a young physician, I hope this translates into a more open mind. He reminded me of the many young doctors I work with.
Jan was then, sharing a dream she had. Not quite sure if it was during the time she was unconscious or later. Quite fascinating seeing the energy she invested in trying to communicate the details of the dream.
Here is where Jan is:
Her language and cognitive skills continue to improve.
She is becoming stronger physically.
Her emotions are more stable, she has developed a good ability to laugh at her own mistakes.
Her frozen right shoulder will take 12 to 18 months to get back to normal functioning.
Her hand needs more work. The whole right side is very sensitive to the touch, in particular the hand.
She is in a very good spirit with the prospect of having a weekend pass.
More to come...
-Fede
The doctor came to visit and we had a chance to talk about the weekend pass in more detail. He deferred the decision to the "team", in particular to the physio-therapist. It is good to see some changes from the time when the doctors decided everything, even when they didn't have the best data or first hand knowledge about the patient. He is a young physician, I hope this translates into a more open mind. He reminded me of the many young doctors I work with.
Jan was then, sharing a dream she had. Not quite sure if it was during the time she was unconscious or later. Quite fascinating seeing the energy she invested in trying to communicate the details of the dream.
Here is where Jan is:
Her language and cognitive skills continue to improve.
She is becoming stronger physically.
Her emotions are more stable, she has developed a good ability to laugh at her own mistakes.
Her frozen right shoulder will take 12 to 18 months to get back to normal functioning.
Her hand needs more work. The whole right side is very sensitive to the touch, in particular the hand.
She is in a very good spirit with the prospect of having a weekend pass.
More to come...
-Fede
Monday, April 10, 2006
Aphasia, Apraxia
Anne and went to class with Jan today in the early afternoon. It was occupational therapy. Memory exercises, matching, alternating sequences, multiple tasking, and a short story the therapist wanted to work on, but Jan just said it was too much. Wothout a break, we whelled into the Speech and Language session. Another battery of assessment questions and exercises, and a very nice explanation of expressive aphasia [the broken link between thinking and choosing the correct words to express it] and apraxia [the broken link between thinking, choosing the words, and then having the mouth say something unplanned, as if it had a life of its own!] When I heard the definition of apraxia, I couldn't stop thinking about those that talk without thinking... what would this be? Apraxia -having a mouth that goes on by itself, totally disconnected from the brain-, or some strange form of aphasia[...] or probably is just being a blabbermouth :)
Jan works hard. She is aware of her own mistakes. She corrects quickly what she can see. However, she cannot read well the right side of pages, because of her diminished sight in the right eye. She needs to train moving her head to the right so her left eye can catch whatever is on the right field of vision. So far, we have been compensating for her by sitting on her left, now the therapist wants Jan to make the necessary adjustments to cover all she can. So next time you visit, try placing yourself in both fields of vision and reminding Jan that it is just practice.
I asked Jan what was happening to her right hand.
She said, I can't find it. It is not there. I am waiting for America.
I probed, did you say America?
She said, No! I can't find the wonder...
I helped, America, America....is it a miracle?
She said, Yes! That's what it is!
So, there you have it. A request. You'll have to do some overtime, do some fasting, wake up earlier, rally your friends to pray, send pyramid emails asking for Jan's miracle, whatever you must do. Jan needs a miracle!
-Fede
Jan works hard. She is aware of her own mistakes. She corrects quickly what she can see. However, she cannot read well the right side of pages, because of her diminished sight in the right eye. She needs to train moving her head to the right so her left eye can catch whatever is on the right field of vision. So far, we have been compensating for her by sitting on her left, now the therapist wants Jan to make the necessary adjustments to cover all she can. So next time you visit, try placing yourself in both fields of vision and reminding Jan that it is just practice.
I asked Jan what was happening to her right hand.
She said, I can't find it. It is not there. I am waiting for America.
I probed, did you say America?
She said, No! I can't find the wonder...
I helped, America, America....is it a miracle?
She said, Yes! That's what it is!
So, there you have it. A request. You'll have to do some overtime, do some fasting, wake up earlier, rally your friends to pray, send pyramid emails asking for Jan's miracle, whatever you must do. Jan needs a miracle!
-Fede
SUNDAY BLOG
Picture perfect day. A bit of wind. Lots of joggers on the streets. Spring is here!. Jan went for a stroll in the park next to the hospital; well, she was in a whelchair. Encouraging signs of warmer whether at the time when Jan is feeling adapted to her new digs.
Many still don't know how to get there. Here is a link to a map and instructions on how to get to Bridgepoint Health:
http://www.bridgepointhealth.ca/Home.aspx?PageID=60&mid=_ctl0_MainMenu__ctl1-menuItem002-subMenu-menuItem000
Parking on Broadway is $1/Hr or you can park in the hospital parking lot at $2.25/Hr.
Best times to visit are Tuesdays, Fridays and weekends (11 to 8pm). The other days, Jan is in intensive training (physio, speech and occupational) and usually is tired at the end of the day. Because she is in a shared room for the time being, it is best not to bring large gift items for her.
My lesson for the day was: learn to live the actions of life, don't get stuck in the concepts. Jan is able to carry out longer conversations and her vocabulary continues growing by the minute. Her goal continues to be back on track as soon as possible.
She is looking forward to Easter, in particular Sunday, because she has had a resurrection herself.
-FC
Saturday, April 08, 2006
Talking cards and exercise
Jan is a people person. During her life she has invested a lot in developing her friendships. Now that she is in the hospital, you can see the returns of that investment. She loves the visits from her loving friends from a long time ago and from those she has recently met. She knows many of you don't come in person, but send little notes, or pray for her. She knows. You are the a source of strength for her, the voices that encourage her to get well. She knows she belongs and is embraced.
Some of you have gone the extra mile for Jan. Donna from N. Carolina, for example, has developed practical "talking cards" to help Jan. Thanks. Jan is helped by that, but she is more impacted by the love you show her by coming from thousands of miles away to visit her. I am amazed at the ease of communication between the two of you. This is what happens after you have knows someone for a long time: you need fewer words to say more. That's good mileage! Mom, in spite of her fear of driving in the city, comes all the way from Orillia to visit her daughter. Know that Jan notices this and appreciates it deeply. Dad and Carol, in spite of having gone through a surgery they keep visiting and showering Jan with love. Sue and Steve bring beautiful and very meaningful gifts that really get Jan's spirit soaring! Sue's willingness to do the "night shift" many a night while Jan was struggling in critical care, what a show of solidarity in time of need!. Anne, David, Joy, Julia, Martha, Katy, Sybille, Kate, Linda, Marianne, Jeannie, Linda Ruth, Sharon, others from RUC, The Sanctuary, and Bethel keep stubbornly believing that Jan would be restored and kept serving the best they could. You have been the friends that "lowered Jan's stretcher through the roof" when she could not ask by herself for healing. Barry and Ginette, your contagious happiness is always a boost for Jan. The many others I don't know or I don't remember now. Jan is well loved by all of you. And know that you are loved in return.
Louise, who has been an incredible sister to Jan. Her effort is noted, the sacrifices she makes to visit Jan, the willingness to spend time with her, the extra effort that Tony makes to allow Louise to be here, every little detail has been noted by Jan. We feel blessed immensely by having a sister like Louise.
At the end of the day, this is the greatest gift you can give to her: your love.
This is the basic bond of life, and Jan needs all the love you can give. The hospital can give her therapy and provide for her with the basic services she needs, but you can give her love.
Please do not stop.
-Fede
Some of you have gone the extra mile for Jan. Donna from N. Carolina, for example, has developed practical "talking cards" to help Jan. Thanks. Jan is helped by that, but she is more impacted by the love you show her by coming from thousands of miles away to visit her. I am amazed at the ease of communication between the two of you. This is what happens after you have knows someone for a long time: you need fewer words to say more. That's good mileage! Mom, in spite of her fear of driving in the city, comes all the way from Orillia to visit her daughter. Know that Jan notices this and appreciates it deeply. Dad and Carol, in spite of having gone through a surgery they keep visiting and showering Jan with love. Sue and Steve bring beautiful and very meaningful gifts that really get Jan's spirit soaring! Sue's willingness to do the "night shift" many a night while Jan was struggling in critical care, what a show of solidarity in time of need!. Anne, David, Joy, Julia, Martha, Katy, Sybille, Kate, Linda, Marianne, Jeannie, Linda Ruth, Sharon, others from RUC, The Sanctuary, and Bethel keep stubbornly believing that Jan would be restored and kept serving the best they could. You have been the friends that "lowered Jan's stretcher through the roof" when she could not ask by herself for healing. Barry and Ginette, your contagious happiness is always a boost for Jan. The many others I don't know or I don't remember now. Jan is well loved by all of you. And know that you are loved in return.
Louise, who has been an incredible sister to Jan. Her effort is noted, the sacrifices she makes to visit Jan, the willingness to spend time with her, the extra effort that Tony makes to allow Louise to be here, every little detail has been noted by Jan. We feel blessed immensely by having a sister like Louise.
At the end of the day, this is the greatest gift you can give to her: your love.
This is the basic bond of life, and Jan needs all the love you can give. The hospital can give her therapy and provide for her with the basic services she needs, but you can give her love.
Please do not stop.
-Fede
Friday, April 07, 2006
First day at the Rehab Hospital
I know I spent less time with Jan on her first day at B. than Sue did, but I did spend an hour or so with her while Sue was out having tea with Donna from the US.
I got to Jan's new room some time around 3pm. Although Jan seemed tired, she was not 'nodding off to sleep' tired at all, and was in very good spirits. It was really nice to see so many smiles and to hear so many laughs from her near the end of a long and stressful day. Now that's progress! Her speech continues to improve, as others have said, but she doesn't always see it. When you visit, if you honestly notice she's speaking better than the last time you saw her, be sure to let her know.
One big change I've noticed in her behaviour is her own reaction to her odd speech patterns and inability to find the words for her thoughts: she repeatedly just laughed - a sort of 'oh well, can't get it now' laugh. Before, she would often react with real anguish and frustration. I don't think for a minute that that reaction is gone for good, but the ability to laugh at the situation is a wonderful addition!
(We also shared a gentle laugh when we noticed the lady in the bed across the room had fallen asleep while still holding her magazine up as if for reading. How did she do that?)
On a personal note, the B. Hospital is in a neighbourhood I used to live in, and I told Jan I used to do wind sprints on the very running track she can see from her window. I even had a house-mate who worked in this hospital. It was nostalgic being there.
-Steve
I got to Jan's new room some time around 3pm. Although Jan seemed tired, she was not 'nodding off to sleep' tired at all, and was in very good spirits. It was really nice to see so many smiles and to hear so many laughs from her near the end of a long and stressful day. Now that's progress! Her speech continues to improve, as others have said, but she doesn't always see it. When you visit, if you honestly notice she's speaking better than the last time you saw her, be sure to let her know.
One big change I've noticed in her behaviour is her own reaction to her odd speech patterns and inability to find the words for her thoughts: she repeatedly just laughed - a sort of 'oh well, can't get it now' laugh. Before, she would often react with real anguish and frustration. I don't think for a minute that that reaction is gone for good, but the ability to laugh at the situation is a wonderful addition!
(We also shared a gentle laugh when we noticed the lady in the bed across the room had fallen asleep while still holding her magazine up as if for reading. How did she do that?)
On a personal note, the B. Hospital is in a neighbourhood I used to live in, and I told Jan I used to do wind sprints on the very running track she can see from her window. I even had a house-mate who worked in this hospital. It was nostalgic being there.
-Steve
Communicating with a Person with Aphasia
Hi Folks. Fede asked me to add the following link to the links section of this page (on your left, lower down). It's a good set of suggestions to read before you go to visit Jan in her new digs. I don't think all of the suggestions apply to Jan, but many do, and it's worth the few minutes it takes to read it over.
http://www.aphasia.ca/training/tips.html
-Steve
http://www.aphasia.ca/training/tips.html
-Steve
Thursday, April 06, 2006
Busy schedule
Jan is in a busy physiotherapy, speech therapy and occupational therapy schedule. If you visit during the scheduled activities, be prepared to be part of the activities-if the therapists invite you-. She has to re-establish the connnections lost. She is working right now on contrasting things, like dogs and cows, on ordering by magnitude, like water in a bucket or in a swimming pool, on associations like light-day, dark-night, on organizing sequences, saturday-friday, february-january. She will benefit if you can use some of these in your regular conversations with her.
She has been having more drastic mood swings. It can be that as her right arm and leg are becoming more mobile, they also have become more sensitive. She expresses pain often on that side of her body. Her energy level is still variable. Last night she could not sleep well, so this morning she was struggling to stay awake during the speech therapy.
She is expanding her vocabulary and is very aware of spiritual toughts and practices. She speaks often about these part of her life. Paul from O. suggested that she write her journal, but she is still not ready to do that. We hope soon she will be able to write her own thoughts. Having Aphasia can be frustrating, because she thinks in her brain a thought but the word that comes out of her mounth can be completetly unrelated, she is thinking about a card and says curtain or wants her glasses and says boxes. This is the process, to build the connections between words and thoughts.
Because of this communication challenge, she has become very observant, She used to be able to read people's emotions very well, now this skill has been refined to the Nth degree. So be expressive about what you are feeling, it is another way of keeping a conversation with her.
She is currently in a limited space, so she feels a bit crowded. When you visit, ask for permission to go to the cafeteria or the lounge, or if possible to the park behind. I don't know the rules well yet. You'll have to ask.
If you want to bring her a gift, she would love a simple cotton t-shirt. She uses them for exercise.
Parking is easier. You can park for free after 6PM the Broadway street. During the day I think it is $1/hr. The hospital parking lot is $2.50 per 1/2 hour.
Enjoy your ability to speak clearly and the use of both hands. Then think of Jan and give thanks because she is alive and happy.
-FC
Hi folks,
It's Sue here and I thought I would update everyone on the experiences of moving Jan from S. Hospital to her new home at B., the rehab hospital.
My morning started with an early rising at 5:30am. Steve dropped me off at S. Hospital at 7am.
Jan was already dressed and just making the finishing touches to herself to be ready for the transfer by ambulance at 7:30am.
I rode inside the ambulance with Jan, who was at that time anxious about moving to her new home. The paramedics were wonderful. They made Jan feel really at ease about her new home!
I was asked to put my seat belt on, and I am glad I did so. I thought that I was going to end up sitting in the front seat with the driver when he stopped short. Fede was following us. I am not clear on one thing: Fede were you speeding??? The ambulance was moving at quite the clip! (big smile!)
We arrived at B. and without any delay Jan was taken to her new home in Room 320, Bed 2. She has a wonderful view of a park and a door that has a balcony and a window that actually opens with real fresh air!
She was immediately greeted by her nurse "Maria" and welcomed to the facility. Later on she received a card with her name written on it, welcoming her to B.
Fede stayed for a short while, but not long enough for Jan before he was off to work. I think she really misses her time with Fede.
After Fede left, she was inundated with support people on her team introducing themselves to her and explaining what their capacity was and how they would help her. This part seemed really overwhelming because Jan has a large team to help her through the next steps of recuperation. I believe we met 7 people on Jan's team all asking different questions of her. Each one had a four page questionionaire!
She already has a schedule set up that begins tomorrow with OT (Occupational Therapy), speech therapy, rehab therapy to get the right side of her body moving, and music therapy. Jan is at one of only two rehab facilities in the whole area that has music therapy!
There was no question that they were going to put her in that program after they found out that she taught music at school.
Jan set her goal as being able to go back to work!
The constant stream of team members introducing themselves and trying to get to know her slowly tired Jan out with each conversation. By noon, she was exhausted. When I left at 4pm she had still not met everyone on her team; however, her therapy begins tomorrow.
The most astounding fact that I learned yesterday had to do with her limited use of her right arm. The doctor diagnosed the arm as having "frozen shoulder syndrome" and said it could take up to 12 to 18 months to correct! (Jan has consistently beat the predictions so far - let's hope and pray she beats this one too!) Partially, the amount of time to heal has to do with the lack of physiotherapists working with Jan while she was at S. Hospital. I don't want to knock S. Hospital at all, because they did an exceptional job of saving and working with Jan. She had many milestones there as a result of their care.
Working on the frozen shoulder will be first on the plan of attack at B., along with working on her speech
The disappointing news that Jan received was that she would not be receiving any weekend passes until B. has enough data on her to determine what equipment she'll need, what her immediate needs will be, and until Fede gets the training he needs. Since Jan had just arrived, this was a little hard for her to hear.
To Jan's delight, by 2pm she had already received two visitors - Donna and Anne.
All in all it was a very good day, and Jan was tired but in good spirits when I left her.
Sue
Wednesday, April 05, 2006
Rehab
I was about to give up writing this blog last night. I felt like a blobbering fool last night, ranting about my perception of where is Jan in any given day; sometimes, focusing on my feelings, or on trivial events, considering hollow thoughts, skirting the real questions, because the reality was too hard to take: Jan, my wife, is in the hospital with aphasia and apraxia. While trying to clean the blood clot in her brain, the surgeons cut pieces of her brain out. In those cells were precious complex connections necessary for language and understanding, cells that carried the programs for fine movements of limbs. The program required for a right handed person to move the right hand and be able to do things like writing, or playing the guitar. Jan's brain is not the same. Jan is not the same. These are facts, and facts have a strange way of leaving out feelings or beliefs. They just are. Cold, concrete facts.
All the while I kept hearing the "real" questions formulated far from the hospital:"what is the real prognosis for Jan? Where will she be in a month, in six months? What is possible? Will she ever teach again? Will she be able to sing? Why Jan? Why was she hit right on her strengths, her voice, her speech, her analytical mind?" I know the questions, because I have formulated the same questions myself with no clear answers.
Day after day, for 54 days, I kept seeing the visitors, the get well messages, the middle of the road wishes, while Jan slowly continued her struggle to find in other places in her brain what is lost. I wonder if the questions evidence something else, like symptoms only point to the roots of a problem. I looked at my questioning and called it realism. It is as if the split between hard facts and solid faith some days was resolved in favour of the former, with the innevitable conclusion: accept what you got, that is as good as it is going to get.
I was about to give up the blogging, until I read a note from Anne tonight. She knows the same thing I found: that Jan is in better hands than mine, that Jan is being cared for and protected by the One who in the first place gave her life and faith. That this is not about results. That I miss the point by focusing on what Jan will get back or will not as the gage to define my own reaction to the One who brought Jan into my life. That Jan's life is already better because of the aneurysm, that she is soaring higher than before because of what she is going through, that even though her conceptual abilities are affected, her character is even stronger and clearer than before, that after being so close to death, life will take on a different hue... I was about to keep the process to myself and quit blogging. Let someone more objective write the history.
Tonight, Jan was more relaxed in her new room which she shares with two elderly ladies. Repeatedly she said:"It is OK" anticipating my anxiety. Tonight Jan and I talked about the future as a couple. Tonight she was moving more her right arm and her hand. She even told me to take it easy... She had phoned me in my office earlier to ask me in detail for clothing items she needed. Donna helped a bit with the "translation" but Jan's discourse was extraordinarily clear. She is more mobile, independent and talkative. tonight Jan said she would be allright soon and would go abck to work.
Both Jan and Anne taught me a lesson about faith tonight. Jan is OK and she is already blessed.
-Fede
PS for concre information about the hospital, visit their website.
All the while I kept hearing the "real" questions formulated far from the hospital:"what is the real prognosis for Jan? Where will she be in a month, in six months? What is possible? Will she ever teach again? Will she be able to sing? Why Jan? Why was she hit right on her strengths, her voice, her speech, her analytical mind?" I know the questions, because I have formulated the same questions myself with no clear answers.
Day after day, for 54 days, I kept seeing the visitors, the get well messages, the middle of the road wishes, while Jan slowly continued her struggle to find in other places in her brain what is lost. I wonder if the questions evidence something else, like symptoms only point to the roots of a problem. I looked at my questioning and called it realism. It is as if the split between hard facts and solid faith some days was resolved in favour of the former, with the innevitable conclusion: accept what you got, that is as good as it is going to get.
I was about to give up the blogging, until I read a note from Anne tonight. She knows the same thing I found: that Jan is in better hands than mine, that Jan is being cared for and protected by the One who in the first place gave her life and faith. That this is not about results. That I miss the point by focusing on what Jan will get back or will not as the gage to define my own reaction to the One who brought Jan into my life. That Jan's life is already better because of the aneurysm, that she is soaring higher than before because of what she is going through, that even though her conceptual abilities are affected, her character is even stronger and clearer than before, that after being so close to death, life will take on a different hue... I was about to keep the process to myself and quit blogging. Let someone more objective write the history.
Tonight, Jan was more relaxed in her new room which she shares with two elderly ladies. Repeatedly she said:"It is OK" anticipating my anxiety. Tonight Jan and I talked about the future as a couple. Tonight she was moving more her right arm and her hand. She even told me to take it easy... She had phoned me in my office earlier to ask me in detail for clothing items she needed. Donna helped a bit with the "translation" but Jan's discourse was extraordinarily clear. She is more mobile, independent and talkative. tonight Jan said she would be allright soon and would go abck to work.
Both Jan and Anne taught me a lesson about faith tonight. Jan is OK and she is already blessed.
-Fede
PS for concre information about the hospital, visit their website.
Tuesday, April 04, 2006
Threading hope
Jan had a less than plentiful day, full of anxiety, and low in energy. Was up in the morning for breakfast and some conversation, then, when I left, she felt asleep until the early afternoon. Mom and Louise came to visit and I got back to the hospital at dinner time. At one point she asked me to braid her hair. I tried a couple of methods and failed miserably. Then Louise had a try, but she was very sensitive and any stimulation was magnified, she expereinced a little pull of her hair as something really painful. After a few minutes of an emotional roller-coaster, she had her hair in a bun, not exactly what she wanted but she accepted the job. Her speech continues to improve little by little. Her energy is still limited to about an hour at a time. We packed her last cards and clothes. Steve and Sue came with a beautiful gift: a sculpture of two eagles soaring. Jan was really happy, because years ago she was told that she had to live life like an eagle. soaring high. We made plans for tomorrow, the moving day. They will come early in the morning to transport her in an ambulance to the Rehab hospital. She is looking forward to the change, but at the same time, anxiety took the best of her today. Pray that she keeps her inner strength and peace in spite of the external changes. Her strength in her right leg is increasing by the day. She was making horizontal and vertical movements with her right arm. Still the pathologists consider her as a patient with Aphasia and Apraxia. I don't know what to think about that. Jan is being challenging all prognosis and is determined to get well. The one thing that is still sure is that I have no name for her, I am Mom, Tom, Will, Peter, Tony, Andrew, Paul, Joseph, and everyone in between...I think I have gotten over my identity crisis. Please call the contact people to get detailed instructions of how to get there.
blessings,
FC
blessings,
FC
Monday, April 03, 2006
Statistics, prognosis and Jan
Tonight, Jan was relentless in her determination of living everyday as if it was the last or the first -depending on how you see life-. She had some visitors during the day, her parents, Donna, and someothers I could not identify from Jan's description: "a nice boy and a pretty".
We talked about the importance of telling the truth all the time, of keeping personal integrity by living up your word, of how much more rich is to be real than a fake, of how God does not hold you to your mistakes because he is merciful, of the memories she has of the events 2 hours before the aneurysm ruptured up to the point when the paramedics placed her inside of the ambulance, of what I had promised her last week, of the visits of Louise when Jan was unconscious, of how everyone of us though she was dead while she was talking to these other people hard to describe (amazing, isn't it? considering that the neurologists said repeatedly that she would not remember much of her stay in the hospital or two to three days before the hemorrhage). Jan is definitely in a crusade to challenge prognosis, statistics or any other generality about surviving a ruptured aneurysm.
She is doing her part and in her words: "I will be back to work in two or three months". The question is: how far will you walk in prayer with her?
best regards,
-Fede
We talked about the importance of telling the truth all the time, of keeping personal integrity by living up your word, of how much more rich is to be real than a fake, of how God does not hold you to your mistakes because he is merciful, of the memories she has of the events 2 hours before the aneurysm ruptured up to the point when the paramedics placed her inside of the ambulance, of what I had promised her last week, of the visits of Louise when Jan was unconscious, of how everyone of us though she was dead while she was talking to these other people hard to describe (amazing, isn't it? considering that the neurologists said repeatedly that she would not remember much of her stay in the hospital or two to three days before the hemorrhage). Jan is definitely in a crusade to challenge prognosis, statistics or any other generality about surviving a ruptured aneurysm.
She is doing her part and in her words: "I will be back to work in two or three months". The question is: how far will you walk in prayer with her?
best regards,
-Fede
Sunday, April 02, 2006
Back to the hospital
Jan is back to her room. She was anxious to go back, and sad to leave the house. What a paradox!
She had a mixed weekend. Restaurant, shopping, visits, sleep, some anxiety about getting a sense of what was her life before and how strange it seems now. She had an incredible conversation with her parents and me, for about one hour she told us about what she remembers and how she sees herself now. Lots of insight and food for thought. One amazing memory she has is about the moment the paramedics put her on the strecher, then put her inside of the ambulance, and then, she just fell asleep. This is about 15 minutes after the burst of the aneurysm. Again, we were told she would not have any memories of two or three days before the event... We were thrilled to hear such story with such clarity and precision.
I forgot to mention that on Saturday we had the services of a great butler, I would recommend his services, in particular his dish-washing transferable skills. Thanks David for the great service.
This morning she was not in the best space. We were unaware of the change of time, so we lost one hour of action. After breakfast she was irritable. It could have been my cooking or my sense of humor, who knows. Sharon came for a visit; at lunch time we went to Swiss Chalet and from there to the hospital.
She will be getting ready for the move onTuesday or Wednesday. so we had to do some packing of all the presents and tokens of good wishes in her room. Chocolates gallery, flowers, cards, toys, clothes, shawls, sleeping gear, etcetera, etcetera. After 52 days, she had accummulated quite a bit of stuff. I had already brought some home on Friday. She is looking forward to the change, but at the same time she is apprehensive.
Change is always difficult, in her case this is magnified. Please pray for peace, that her heart be still and secure, that the family and friends be understanding and supportive.
Keep connected,
-Fede
She had a mixed weekend. Restaurant, shopping, visits, sleep, some anxiety about getting a sense of what was her life before and how strange it seems now. She had an incredible conversation with her parents and me, for about one hour she told us about what she remembers and how she sees herself now. Lots of insight and food for thought. One amazing memory she has is about the moment the paramedics put her on the strecher, then put her inside of the ambulance, and then, she just fell asleep. This is about 15 minutes after the burst of the aneurysm. Again, we were told she would not have any memories of two or three days before the event... We were thrilled to hear such story with such clarity and precision.
I forgot to mention that on Saturday we had the services of a great butler, I would recommend his services, in particular his dish-washing transferable skills. Thanks David for the great service.
This morning she was not in the best space. We were unaware of the change of time, so we lost one hour of action. After breakfast she was irritable. It could have been my cooking or my sense of humor, who knows. Sharon came for a visit; at lunch time we went to Swiss Chalet and from there to the hospital.
She will be getting ready for the move onTuesday or Wednesday. so we had to do some packing of all the presents and tokens of good wishes in her room. Chocolates gallery, flowers, cards, toys, clothes, shawls, sleeping gear, etcetera, etcetera. After 52 days, she had accummulated quite a bit of stuff. I had already brought some home on Friday. She is looking forward to the change, but at the same time she is apprehensive.
Change is always difficult, in her case this is magnified. Please pray for peace, that her heart be still and secure, that the family and friends be understanding and supportive.
Keep connected,
-Fede
Saturday, April 01, 2006
Saturday at home
Sleeping in, having tea and breakfast without any rush, listening to music, then taking another nap. This was Jan's morning. Relaxed, with all the time in the world to just be.
At noon, Jan went shopping for food. That's right. she went pushing the shopping cart from the parking lot all the way up on a movator and then throught the produce and bakery sections, until we got to the cereals, where she spotted a small step and decided to sit there while I went looking for a few more items. She latter went throught the self-serve check-out where she struggled with the logic of the machine... and then back home.
Many thanks to Wolf and Monica for the delicious lunch they brought and prepared. What a treat! Jan was very happy. Latter, the whole Walton clan descended from ip norht and for a moment, it just felt like a party. Nice to see the strong connection between Jan, her siblings and her parents. A lot of unspoken communication was going on there.
Thanks toe ceryone who made this a nice Saturday for Jan.
-Fede
At noon, Jan went shopping for food. That's right. she went pushing the shopping cart from the parking lot all the way up on a movator and then throught the produce and bakery sections, until we got to the cereals, where she spotted a small step and decided to sit there while I went looking for a few more items. She latter went throught the self-serve check-out where she struggled with the logic of the machine... and then back home.
Many thanks to Wolf and Monica for the delicious lunch they brought and prepared. What a treat! Jan was very happy. Latter, the whole Walton clan descended from ip norht and for a moment, it just felt like a party. Nice to see the strong connection between Jan, her siblings and her parents. A lot of unspoken communication was going on there.
Thanks toe ceryone who made this a nice Saturday for Jan.
-Fede
Sushi, Yakitora and Gyoza
Yesterday Friday, Jan left for the second time the hospital. When I entered her room, she was wearing a blue dress and a sweater. I asked her if the nurse had helped her get dressed up, she said she had done it by herself. She was wearing a huge smile.
After leaving the hospital for the second weekend pass, Jan enjoyed Japanese food. She was happy to be back in a restaurant. It brought back some sense of normalcy to her life. She enjoyed a Teriyaki beef dinner with a half a dozen small dishes with vegetables and jelly-like edible substances. She made faces to the taste of wasabe and to the strong flavours of some of the garnishings, she loved the tea, but above all, enjoyed the experience. Another simple action that most can take for granted, for her was an extraordinary experience.
We had a long conversation about her recolection of the hours before the aneurysm. I was astonished of the details she remembers. We also talked about the difficulty in communicating and our expectations of how much the rehab will be of help. Above all, she continues to have a strong faith that she is not alone in this...
Join her in her prayers.
-FC
After leaving the hospital for the second weekend pass, Jan enjoyed Japanese food. She was happy to be back in a restaurant. It brought back some sense of normalcy to her life. She enjoyed a Teriyaki beef dinner with a half a dozen small dishes with vegetables and jelly-like edible substances. She made faces to the taste of wasabe and to the strong flavours of some of the garnishings, she loved the tea, but above all, enjoyed the experience. Another simple action that most can take for granted, for her was an extraordinary experience.
We had a long conversation about her recolection of the hours before the aneurysm. I was astonished of the details she remembers. We also talked about the difficulty in communicating and our expectations of how much the rehab will be of help. Above all, she continues to have a strong faith that she is not alone in this...
Join her in her prayers.
-FC
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