Jan is going home again this weekend! After a thorough conference with Jan, the nurse practitioner and the SW were satisfied that Jan indeed wanted to come home again. They have encouraged her to make her own decisions in things like visits, and sometimes in whether she takes some medications or not. This gives her a sense of more control on what is happening in her life right now. In every other aspect, the institution decides for her. Freedom seems so illusory for her now, yet, in a paradoxical way, she enjoys some of the structure and sense of protection this institutionalization brings, like having a bed with side railings or having regular schedules.
She is happy with the idea and has mentioned a few activities she would like to do.
We are planning a quiet Friday night probably watching a movie or listening to music. She will probably be asleep by 9PM.
Saturday will be a visit day. The family will probably come around noon. Everyone else is welcome in the afternoon. Keep in mind that the room capacity of our living room is 178 people standing... if you are the 179th visitor, you may have to wait in the back deck. If you are planning to visit, bring your guitar or violin or flute. We have a piano, so there is no need for you to bring your own. Jan usually goes to sleep around 8:30PM.
On Sunday, we may go out for lunch. We have to be back at the hospital by 4PM.
Please let me now if you wish to join us in any of these activities in advance so we know what to expect.
This weekend will be a good preparation for Jan's move to the Bridgepoint Rehab Centre where she will be moving on Tuesday or Wednesday. Martha has a very good friend there and last night was telling me that that would be the best option. Thank you for your prayers, Jan is going to the right place!
We know that Jan's Easter will have a resurrection in many levels. Blessings,
-Fede
Thursday, March 30, 2006
Rehabilitation
Bravo!!!!
The Social Worker and the nurse both confirmed this morning that there is a place for Jan at Bridgepoint (end of the DVP and Gardiner) in the Riverdale area. She will be moving sometime Tuesday or Wednesday.
Jan was very happy to hear the news. She is looking foward to more intense training (yeah, that's right, she is the same...)
Pray that we can connect with Martha's friend.
Keep checking in this blog for more details.
The Social Worker and the nurse both confirmed this morning that there is a place for Jan at Bridgepoint (end of the DVP and Gardiner) in the Riverdale area. She will be moving sometime Tuesday or Wednesday.
Jan was very happy to hear the news. She is looking foward to more intense training (yeah, that's right, she is the same...)
Pray that we can connect with Martha's friend.
Keep checking in this blog for more details.
Wednesday, March 29, 2006
Serenade at D57
Tonight, Jan got a serenade by the Symmetry Singers of Saint RUC of the Fields. This is the group Jan has led before, now they came to share with us beautiful music and lots of happy smiles. Jan was thrilled, her joy was overflowing. Everyone was enveloped by the magic of the music and the misterious bonds that music can develop between people.
At some point, Jan was marking the rythm and laughing because the musicians were not in step!
What a gift tos ee Jan so happy.
Thanks to the singers, the players and the one who didn't do much but were present to enjoy the moment.
-Fede
At some point, Jan was marking the rythm and laughing because the musicians were not in step!
What a gift tos ee Jan so happy.
Thanks to the singers, the players and the one who didn't do much but were present to enjoy the moment.
-Fede
Aphasia
The day a small piece in Jan's vascular system broke it was like Alice's fall in a hole that landed her in Wonderland. There, not everything is what it seems. Words could mean something or nothing, and any path you choose will take you nowhere if you don't know where you are going. Maddening, frustrating, surprising, and sometimes plainly clear. Jan has been in the Wonderland of her injured brain where she knows what she wants to say but the tongue, and the lips and the teeth will just not cooperate. In the same land, she knows how to move the right hand and her brain knows what the right hand is supposed to do to play a guitar, but the fingers and the wrist will just refuse to follow any commands and prefer to go on sleeping. Aaagghh! Never mind!
Today, the Speech Language Pathologist spent a long time with Louise, Donna and I, describing the forms of Aphasia that Jan has as a result of the Aneurysm. Aphasia is "the breakdown of receptive and/or expressive language functions", it is the result of trauma to the brain (in Jan's case from a genetic neurological disease). It afects, to varying degrees, a person's ability to:
* understand what is said (auditory comprehension)
*get the right words out. construct an accurate message (verbal expression)
*understand printed material (reading comprehension)
*spell and organize words into a sentence, or draw (written expression)
*do numerical computations (e.g. money matters, telling time, using the phone, scheduling)
*understand or use gestures.
To get out of that Wonderland Jan doesn't need to follow a white rabbit, instead she needs all kinds of rehabilitation therapies to rebuild the broken communication pathways between her brain and the various parts of her mouth. This is why her name is on the waiting lists of three rehab institutions in Toronto: one in Riverdale, one in downtown and one in the Weston/401 area. aS soon as a bed becomes available there, she will be transfered. This could happen at any time.
Given the fact that communication pathways are broken in Jan's brain, the first question for those who visit Jan often is: What can I do to help Jan? More detailed information will be posted in the links in this blog so you can enjoy the time to visit with Jan and in an unstructured way, you also can help her repair what is broken in her communication.
Jan's progress is awesome by any standards. I can see the satisfaction on the face of the physicians when they come to see her. I see the encouragement n the nursing staff. I see the happy smiles from the support staff and the cheering from other fellow patients. Today, Jan expressed with a great deal of clarity her agreements and disagreements with the speech expert's methods. It was wonderful to see her filing her complaints in a logical and precise manner. Some words were missings, but the gaps did not stopped her from getting her message accross. Donna was an excellent "translator" when there was a breakdown. It was just amazing the level of conversation happening in her room for about an hour.
Consider this:
DAY 14 -Feb 24, in the ICU, Jan was unable to speak or sit, her communication was limited ot smiling and holding hands
DAY 18 -Feb 28, I found Jan sitting (slouched) in a chair for the first time. That day the Physio had her standing holding a table for a few minutes -she cried. Later in the day she was moved to a ward.
DAY 20 -March 2, Jan pulls out the NG, IV and catheter. 24-hour sitters are assigned to Jan. Her communication is still facial gestures and hand movements only.
DAY 21 -March 3, Jan starts moving her lips as if forming words but she can only produce small whispers.
DAY 23 -March 5, Jan types in a laptop: Hi and is without any tubes for the first time. Latter that day, she scribbled some words (Please, who) on the log book.
DAY 25 -March 7. Jan says "Hi", and "stop talking, Louise!". Jan is bale to go for Wheelchair rides.
DAY 28 -March 10, Jan is talking more: "I tried the orange juice -tastes awful!" then some garbled words...
DAY 35 -March 15, Jan walked for the first time with the help of a walker. Her speech continues to improve. Her swallowing is almost restored.
DAY 38 -March 18. Jan starts walking with only the help of a hand.
DAY 44 -March 24. Jan gets a weekend pass. Her speech is clearer. goes for a walk outdoors. She is very happy to be outdoors.
DAY 48 -March 28. She has a discussion with the Speech Pathologist...Some words are still missing but there us a dramatic improvement in the last 10 days.
-Fede
Today, the Speech Language Pathologist spent a long time with Louise, Donna and I, describing the forms of Aphasia that Jan has as a result of the Aneurysm. Aphasia is "the breakdown of receptive and/or expressive language functions", it is the result of trauma to the brain (in Jan's case from a genetic neurological disease). It afects, to varying degrees, a person's ability to:
* understand what is said (auditory comprehension)
*get the right words out. construct an accurate message (verbal expression)
*understand printed material (reading comprehension)
*spell and organize words into a sentence, or draw (written expression)
*do numerical computations (e.g. money matters, telling time, using the phone, scheduling)
*understand or use gestures.
To get out of that Wonderland Jan doesn't need to follow a white rabbit, instead she needs all kinds of rehabilitation therapies to rebuild the broken communication pathways between her brain and the various parts of her mouth. This is why her name is on the waiting lists of three rehab institutions in Toronto: one in Riverdale, one in downtown and one in the Weston/401 area. aS soon as a bed becomes available there, she will be transfered. This could happen at any time.
Given the fact that communication pathways are broken in Jan's brain, the first question for those who visit Jan often is: What can I do to help Jan? More detailed information will be posted in the links in this blog so you can enjoy the time to visit with Jan and in an unstructured way, you also can help her repair what is broken in her communication.
Jan's progress is awesome by any standards. I can see the satisfaction on the face of the physicians when they come to see her. I see the encouragement n the nursing staff. I see the happy smiles from the support staff and the cheering from other fellow patients. Today, Jan expressed with a great deal of clarity her agreements and disagreements with the speech expert's methods. It was wonderful to see her filing her complaints in a logical and precise manner. Some words were missings, but the gaps did not stopped her from getting her message accross. Donna was an excellent "translator" when there was a breakdown. It was just amazing the level of conversation happening in her room for about an hour.
Consider this:
DAY 14 -Feb 24, in the ICU, Jan was unable to speak or sit, her communication was limited ot smiling and holding hands
DAY 18 -Feb 28, I found Jan sitting (slouched) in a chair for the first time. That day the Physio had her standing holding a table for a few minutes -she cried. Later in the day she was moved to a ward.
DAY 20 -March 2, Jan pulls out the NG, IV and catheter. 24-hour sitters are assigned to Jan. Her communication is still facial gestures and hand movements only.
DAY 21 -March 3, Jan starts moving her lips as if forming words but she can only produce small whispers.
DAY 23 -March 5, Jan types in a laptop: Hi and is without any tubes for the first time. Latter that day, she scribbled some words (Please, who) on the log book.
DAY 25 -March 7. Jan says "Hi", and "stop talking, Louise!". Jan is bale to go for Wheelchair rides.
DAY 28 -March 10, Jan is talking more: "I tried the orange juice -tastes awful!" then some garbled words...
DAY 35 -March 15, Jan walked for the first time with the help of a walker. Her speech continues to improve. Her swallowing is almost restored.
DAY 38 -March 18. Jan starts walking with only the help of a hand.
DAY 44 -March 24. Jan gets a weekend pass. Her speech is clearer. goes for a walk outdoors. She is very happy to be outdoors.
DAY 48 -March 28. She has a discussion with the Speech Pathologist...Some words are still missing but there us a dramatic improvement in the last 10 days.
-Fede
Tuesday, March 28, 2006
Ambiguity
When Jan went back to the hospital yesterday, she was happy. Her room has become a little world with clear roles and established routines, with some control on her environment. The visit was full of anticipation and happiness, but somehow unpredicatable. At home, she struggled with the lack of bed railings, and the convenience of a hotel looking bedroom. She loved the attention from the family, but we seemed to be too much for her, so she would just tune out and sleep. The logistics were a bit challenging, but we managed, nevertheless, there was a sense of detachment from Jan we could not solve. Is it possible that Jan has become a stranger in her own home?
Everything about Jan right now seems to be in the process of becoming. A constant flux of change. Everyday brings new words, new levels of communication. Her personality sometimes seems so familiar, and then in an instant, she becomes someone else.
I spoke with the speech therapist for a long while this morning. She seems to have a limited perception of Jan's capabilities and underlined that visitors can have a great impact on Jan's development of communication skills. check in the next log more detials about this. In the mean time, I try to remember that our emotional rollercoaster cannot even come close to the struggle Jan faces everyday to come back. She said about her right hand, at the return to the hospital, "It is lost in my head, I will find it again"
All of us can help her come back and be restored.
-Fede
Everything about Jan right now seems to be in the process of becoming. A constant flux of change. Everyday brings new words, new levels of communication. Her personality sometimes seems so familiar, and then in an instant, she becomes someone else.
I spoke with the speech therapist for a long while this morning. She seems to have a limited perception of Jan's capabilities and underlined that visitors can have a great impact on Jan's development of communication skills. check in the next log more detials about this. In the mean time, I try to remember that our emotional rollercoaster cannot even come close to the struggle Jan faces everyday to come back. She said about her right hand, at the return to the hospital, "It is lost in my head, I will find it again"
All of us can help her come back and be restored.
-Fede
Sunday, March 26, 2006
The other side of Sunday
Jan survived two full days of Fede's cooking and the less structured environment of home (too less structured for Jan's liking). Between failed stuffed zuccini canoes, meals without a tight schedule and my preference for strong tea, Jan was a real trooper and graciously declined any comment to the questions: Did you like the food and the service?
My utmost respect for caregivers of any kind. This weekend was a bit of relaxation for Jan and the visitors but for me it was a real test of endurance and patience.
Jan continues to increase her vocabulary and the time of the conversations has increased from a few minutes to about an hour in the mornings. Afterwards, her energy level drops dramatically. She is more aware and also more balanced when walking. Tremendous advances considering that 44 days ago she was on the edge of death.
Thank you for the support in big and small things. Blessings in return,
-Fede
My utmost respect for caregivers of any kind. This weekend was a bit of relaxation for Jan and the visitors but for me it was a real test of endurance and patience.
Jan continues to increase her vocabulary and the time of the conversations has increased from a few minutes to about an hour in the mornings. Afterwards, her energy level drops dramatically. She is more aware and also more balanced when walking. Tremendous advances considering that 44 days ago she was on the edge of death.
Thank you for the support in big and small things. Blessings in return,
-Fede
Saturday, March 25, 2006
Weekend day 2
As Saturday comes to an end, I can fully appreciate the amount of work that is involved in monitoring Jan 24/7. Jan came home yesterday evening, went through some personal hygiene routines, listened while I read, then listened to some music before calling the day at about 8PM. When I told her what time it was, she was surprised. She slept some 14 hours with a couple of brief interruptions. In general she was very talkative, and relaxed.
This morning she woke up more irritable. We had breakfast and listened to music. She slept more. At noon Louise and her children came to have lunch with us. Mom, Dan and Carol came later for a visit. Jan slept most of the time her parents were visiting. As the day went on, her language became more difficult to understand, at supper time Steve and Sue came for a visit. Jan's energy dropped and became more irritable. We watched Forrest Gump, at the end, around 10:30 PM, Jan went to sleep.
The day has been full of blessings, but it has highlighted the challenges for the caregivers is Jan was living at home now. The visit has already had its benefits for both, Jan and the family.
Pray for
-Strength and clarity for Jan as she continues to advance her language, cognitive and physical skills.
-Peace of spirit as she realizes that she has to depend on others more than what she would like.
-Perseverance for all. It is easy to feel overwhelmed.
-Wisdom to see beyond the immediate circumstances, and to distinguish what comes from above and what not.
-Trust to step onto the waters...
-Fede
This morning she woke up more irritable. We had breakfast and listened to music. She slept more. At noon Louise and her children came to have lunch with us. Mom, Dan and Carol came later for a visit. Jan slept most of the time her parents were visiting. As the day went on, her language became more difficult to understand, at supper time Steve and Sue came for a visit. Jan's energy dropped and became more irritable. We watched Forrest Gump, at the end, around 10:30 PM, Jan went to sleep.
The day has been full of blessings, but it has highlighted the challenges for the caregivers is Jan was living at home now. The visit has already had its benefits for both, Jan and the family.
Pray for
-Strength and clarity for Jan as she continues to advance her language, cognitive and physical skills.
-Peace of spirit as she realizes that she has to depend on others more than what she would like.
-Perseverance for all. It is easy to feel overwhelmed.
-Wisdom to see beyond the immediate circumstances, and to distinguish what comes from above and what not.
-Trust to step onto the waters...
-Fede
Friday, March 24, 2006
Back to reality
When I got to the Jan's room this afternoon, she was already sitting on a chair just inside the door of her room. She was dressed and had her robe on. She had a cloth bag with some of the things she wanted to bring for the weekend. She was ready. More than ready. I could see the spark in her eyes. Omar and I walked in and she welcomed us with a broad smile and an Aaahhhh! full of satisfaction and expectation.
It was about 5PM. The nurse brought a weeked-pass form and a paper bag with all of the medications Jan takes. Jan was listening very attentive. When the nurse said, no walking alone in the stairs, Jan jumped right in to say: "He takes my hand and is always with me in the steps!" She was not going to let any detail stop her from coming home. One of the residents was sitting by, observing Jan. Jan looked at him in the eye and said "are you not going to say something to me?"; he wished Jan a wonderful weekend."Thank you" she replied.
We took her downstairs in a wheelchair. I pulled up to a back door. Jan was on cloud nine, giggling all the way. With little help she got into the car and asked me to drive carefully "like cotton". We got home and step by step, she could hardly contain her rush to get into the house. Willy William was waiting for her at the bottom of the steps. She was thrilled. It was so rewarding to see her beaming.
It is incredible to think that Jan is home! Day 42 since the operation.
We had a quiet evening talking about fond memories. Her conversation is amazingly clear tonight. Then, she went to sleep peacefully. I took advantage of this time to blog these lines.
Thanks to all of you for your prayers and good wishes for Jan. They are really working, so don't give up!
-Fede
It was about 5PM. The nurse brought a weeked-pass form and a paper bag with all of the medications Jan takes. Jan was listening very attentive. When the nurse said, no walking alone in the stairs, Jan jumped right in to say: "He takes my hand and is always with me in the steps!" She was not going to let any detail stop her from coming home. One of the residents was sitting by, observing Jan. Jan looked at him in the eye and said "are you not going to say something to me?"; he wished Jan a wonderful weekend."Thank you" she replied.
We took her downstairs in a wheelchair. I pulled up to a back door. Jan was on cloud nine, giggling all the way. With little help she got into the car and asked me to drive carefully "like cotton". We got home and step by step, she could hardly contain her rush to get into the house. Willy William was waiting for her at the bottom of the steps. She was thrilled. It was so rewarding to see her beaming.
It is incredible to think that Jan is home! Day 42 since the operation.
We had a quiet evening talking about fond memories. Her conversation is amazingly clear tonight. Then, she went to sleep peacefully. I took advantage of this time to blog these lines.
Thanks to all of you for your prayers and good wishes for Jan. They are really working, so don't give up!
-Fede
The unbearable lightness of love
This has been said before: the main lesson from this dark night for all of us is somehow related to love. Living and loving under the current circumstances are one and the same. This is the only metalanguage in which Jan can communicate without barriers and the one she definitely understands.
I have written a lot about how much I love her, but this morning she made a special effort to let me know how much she loves me back and worries about my health! The patient's role was totally reversed! I don't mind it. In fact, I treasure the lightness of knowing that I am loved as much or more than I love her. What a parable! As Henry Nowen wrote: we are the Prodigal Son, the Father and the Older Brother at different times. The roles change as life moves, but the fundamentals remain: love is perhaps the most important of them.
The "clinical team" confirmed this morning that Jan is coming home for the weekend! We got some training about how to negotiate the stairs at the fornt of the house. Please coordinate your visits to avoid traffic jams. Other than that, keep on loving Jan!
-Fede
I have written a lot about how much I love her, but this morning she made a special effort to let me know how much she loves me back and worries about my health! The patient's role was totally reversed! I don't mind it. In fact, I treasure the lightness of knowing that I am loved as much or more than I love her. What a parable! As Henry Nowen wrote: we are the Prodigal Son, the Father and the Older Brother at different times. The roles change as life moves, but the fundamentals remain: love is perhaps the most important of them.
The "clinical team" confirmed this morning that Jan is coming home for the weekend! We got some training about how to negotiate the stairs at the fornt of the house. Please coordinate your visits to avoid traffic jams. Other than that, keep on loving Jan!
-Fede
Thursday, March 23, 2006
Frustration
One antonym of patience is frustration. We know that this can be a common feeling for Jan these days. She struggles with the right hand that refuses to be found in her brain [aaawh, tch!], as well as that right leg that has less power than the right. [oooh, man!], the room was too hot, then too cold [the injustice!]. her hospital gown kept getting tangled around her neck (how dare they!], she hit her knee on the bed railings [no consideration!] and on top of all that, her husband just could not understand her needs tonight [utterly unconstitutional!]. I hope you didn't think that I was speaking about Jan, because, it was I who was experiencing an extra load of frustration.
Jan was more tired and irritable. But that is expected in her condition. Tonight, I felt like the patient, and I don't really have any excuse. [I hope you will forgive me Jan, for loosing sight of your pain].
I am glad to hear that Jan had a good visit with Louise and Mom, than David and another friend dropped by. I am really encouraged when I hear that portions of her day and other visits are reasonably good.
Of course, my visit today had also plenty of good. Like for example, talking with the team this morning about the possibility of getting a weekend pass for Jan. Yes! She may be coming home for the weekend. There are some concerns about negotiating stairs and other safety and logistical challenges. But, there seemed to be a consensus about Jan being "ready" for this type of expedition. The word is that this type of visit will be helpful to Jan in her recovery of memory and will encourage her to strengthen her determination to get well.
Everyone has to agree on this, including the doctor, but it looks like it could happen.
So, in spite of Jan warning me in our first date that people said she wears her feelings and thoughts on her sleeve, we both decided to give it a try. She is nervous. It's too early to tell how I feel.
Pray for a happy visit home.
-Fede
Jan was more tired and irritable. But that is expected in her condition. Tonight, I felt like the patient, and I don't really have any excuse. [I hope you will forgive me Jan, for loosing sight of your pain].
I am glad to hear that Jan had a good visit with Louise and Mom, than David and another friend dropped by. I am really encouraged when I hear that portions of her day and other visits are reasonably good.
Of course, my visit today had also plenty of good. Like for example, talking with the team this morning about the possibility of getting a weekend pass for Jan. Yes! She may be coming home for the weekend. There are some concerns about negotiating stairs and other safety and logistical challenges. But, there seemed to be a consensus about Jan being "ready" for this type of expedition. The word is that this type of visit will be helpful to Jan in her recovery of memory and will encourage her to strengthen her determination to get well.
Everyone has to agree on this, including the doctor, but it looks like it could happen.
So, in spite of Jan warning me in our first date that people said she wears her feelings and thoughts on her sleeve, we both decided to give it a try. She is nervous. It's too early to tell how I feel.
Pray for a happy visit home.
-Fede
Wednesday, March 22, 2006
The ground rules
Jan is a person who is always asking what is the bottom line. She holds you to your own word like no one I ever met before. Relentless, she challenges any attempt at giving BS for an answer. Her honesty is such that you don't get a chance to duck before the truth hits you like a ton of bricks. This is Jan then...this is Jan today.
She may be challenged to express her challenges as quickly and clearly as she would like, but make no mistake, her essence hasn't changed one bit.
Today was a hectic day -full of urgent things that in the big scope of things are not that important. I stoped for a few minutes to see her before going to work. Sensing my rush, she asked: "is work more choice (important) than your wife?. No matter what my reply was, I really had trouble leaving. This was the perfect way to confront me with priorities before I had my first coffee of the day! But this is Jan and that was that familiar expression on her face expecting a truthful answer.
Then, I came back for a quick visit at the end of the day (around 9:30PM). I told her I was happy to see her, but got the cold shoulder treatment. When I asked her what was the problem she said: do you know that I was waiting many hours? where were you? how come you didn't call me? Am I on top of your day (important)? This is Jan, she didn't let me off the hook that easy. I explained to no avail that I had been tied up in work. Not interested. That I had to deliver a speech.. still not interested. Finally, I said: I'm so sorry that I didn't call you...tehn she just touched my hair and smiled.
She was clar in short intervals and then fade away, but some essential ground rules with Jan are
-don't promise what you cannot do
-don't try to cover your mistakes
-don't try to find excuses, just tell the truth
She remembered what we were talking about this morning.
This is Jan tonight, and I loved every fraction of it.
-Fede
She may be challenged to express her challenges as quickly and clearly as she would like, but make no mistake, her essence hasn't changed one bit.
Today was a hectic day -full of urgent things that in the big scope of things are not that important. I stoped for a few minutes to see her before going to work. Sensing my rush, she asked: "is work more choice (important) than your wife?. No matter what my reply was, I really had trouble leaving. This was the perfect way to confront me with priorities before I had my first coffee of the day! But this is Jan and that was that familiar expression on her face expecting a truthful answer.
Then, I came back for a quick visit at the end of the day (around 9:30PM). I told her I was happy to see her, but got the cold shoulder treatment. When I asked her what was the problem she said: do you know that I was waiting many hours? where were you? how come you didn't call me? Am I on top of your day (important)? This is Jan, she didn't let me off the hook that easy. I explained to no avail that I had been tied up in work. Not interested. That I had to deliver a speech.. still not interested. Finally, I said: I'm so sorry that I didn't call you...tehn she just touched my hair and smiled.
She was clar in short intervals and then fade away, but some essential ground rules with Jan are
-don't promise what you cannot do
-don't try to cover your mistakes
-don't try to find excuses, just tell the truth
She remembered what we were talking about this morning.
This is Jan tonight, and I loved every fraction of it.
-Fede
Eloped
Sorry guys, I eloped yesterday from the daily blog. Here is what happened Tuesday.
-I got to Jan's room (I call it the penthouse -she laughs) to find a bag with food for me! Jan was having her regular solid food from the hospital gourmet menu (she has always told me quietly that the food in this joint stinks...). The plate was rather cold, so I asked Jan wether there was a microwave in the 'hood. She said "go right, then right and there you are". She was absolutely right! Many thanks to K. for the delicious meal. Yes, Jan also tasted it, and confirmed that it was a million times better than... well you get the idea.
-She took her walk around the unit only holding my hand. It took about 15 minutes. She did all the work. After that she was tired, so we sat transversally in her bed to watch the sunset colours in the sky. She could name a few.
-One thing Jan finds very difficult is to be dependent on others... I pray that this build more character in her. The second most difficult issue to deal with is the inability to communicate as before. She was used to go at 100 M/hr; now she has to go at 5 M/hr, with some trouble most of the time. It is terribly frustrating to be able to think what you want to say and not be able to say it. Those who learnt ESL know this feeling well when they were in the first stages.
-There are many lessons for those around her as well. There are many questions no one asks, or of they ask, they do it in their rooms, alone.
-All in all, as P. from Oregon said: "she is a lucky survivor". She has survived two operations and beat all prognosis so far... The doctor has mentioned that now that she has recuperated physically, she is in the list to get her bone flaps back in, as soon as there is a spot. She will be happy, because she keeps feeling her "dent" with her hand many times a days. She is definitely self-conscious about that.
-The day ended with a happy visit from M and M (not the candies) .
Keep blessing Jan in her race towards healing.
-Fede
-I got to Jan's room (I call it the penthouse -she laughs) to find a bag with food for me! Jan was having her regular solid food from the hospital gourmet menu (she has always told me quietly that the food in this joint stinks...). The plate was rather cold, so I asked Jan wether there was a microwave in the 'hood. She said "go right, then right and there you are". She was absolutely right! Many thanks to K. for the delicious meal. Yes, Jan also tasted it, and confirmed that it was a million times better than... well you get the idea.
-She took her walk around the unit only holding my hand. It took about 15 minutes. She did all the work. After that she was tired, so we sat transversally in her bed to watch the sunset colours in the sky. She could name a few.
-One thing Jan finds very difficult is to be dependent on others... I pray that this build more character in her. The second most difficult issue to deal with is the inability to communicate as before. She was used to go at 100 M/hr; now she has to go at 5 M/hr, with some trouble most of the time. It is terribly frustrating to be able to think what you want to say and not be able to say it. Those who learnt ESL know this feeling well when they were in the first stages.
-There are many lessons for those around her as well. There are many questions no one asks, or of they ask, they do it in their rooms, alone.
-All in all, as P. from Oregon said: "she is a lucky survivor". She has survived two operations and beat all prognosis so far... The doctor has mentioned that now that she has recuperated physically, she is in the list to get her bone flaps back in, as soon as there is a spot. She will be happy, because she keeps feeling her "dent" with her hand many times a days. She is definitely self-conscious about that.
-The day ended with a happy visit from M and M (not the candies) .
Keep blessing Jan in her race towards healing.
-Fede
Monday, March 20, 2006
One more thing
I love the way you are writing your thoughts addressed to Jan. Jan enjoys listening to them. I imagine this is like contiuing the conversations you have with her when you visit.
Jan continues her progress. Her achievements of today are:
- She is walking with more balance and strength. Today we took a walk without the walker (at her request) around the unit. The nurses were all cheering her, and encouraging to keep up the effort. She enjoyed all the attention.
-From a booklet used by the speech therapist, she showed me a page with the numbres 1 to 10. She read them all in English and French! (with some hesitation in six and seven), then proceeded to the following pages where she could identify most of the parts of the body, traffic signs and other labels.
-Her speech is clearer, but gets garbled in the third or fourth sentence. She mixes words still, but now she is aware that she is making a mistake.
-For the first time, when the nurse asked her: who is this man? Do you know him? She replied: He is my husband. This is a great improvement from the random words used last week.
She is doing great! But please remember that she is just beginning the long process of rehabilitation. Keep up your blogs and visits. God bless.
-Fede
Jan continues her progress. Her achievements of today are:
- She is walking with more balance and strength. Today we took a walk without the walker (at her request) around the unit. The nurses were all cheering her, and encouraging to keep up the effort. She enjoyed all the attention.
-From a booklet used by the speech therapist, she showed me a page with the numbres 1 to 10. She read them all in English and French! (with some hesitation in six and seven), then proceeded to the following pages where she could identify most of the parts of the body, traffic signs and other labels.
-Her speech is clearer, but gets garbled in the third or fourth sentence. She mixes words still, but now she is aware that she is making a mistake.
-For the first time, when the nurse asked her: who is this man? Do you know him? She replied: He is my husband. This is a great improvement from the random words used last week.
She is doing great! But please remember that she is just beginning the long process of rehabilitation. Keep up your blogs and visits. God bless.
-Fede
Sunday, March 19, 2006
Jan Get Well!
This has been a fantastic week with an incredible weekend! On the first week of March I was writing about Jan’s firsts attempts at talking. Last week I was boasting that Jan was able to go on wheelchair trips to the cafeteria. Every new step or discovery make the previous ones fade
Today Jan decided to go walking around the Unit (about 75 meters). Slow and at times painful, but she walked the whole distance.
Later in the afternoon, Jan stood up from her bed and with me only holding her hand, she walked from the sink to her bed! She did this twice, as if she wanted to confirm to herself that she could do it
She seems to be intent in challenging everything said in the literature or the conservative estimates from the doctors. Against all odds, she continues at heal. It is her body doing the overtime, the love of all the friends and mine, and the incredible hope of some of you.
Many, many thanks for carrying the hope, the love and the faith.
-Fede
Today Jan decided to go walking around the Unit (about 75 meters). Slow and at times painful, but she walked the whole distance.
Later in the afternoon, Jan stood up from her bed and with me only holding her hand, she walked from the sink to her bed! She did this twice, as if she wanted to confirm to herself that she could do it
She seems to be intent in challenging everything said in the literature or the conservative estimates from the doctors. Against all odds, she continues at heal. It is her body doing the overtime, the love of all the friends and mine, and the incredible hope of some of you.
Many, many thanks for carrying the hope, the love and the faith.
-Fede
Saturday, March 18, 2006
Take your walker and walk!
Jan seems to like Saturdays to deliver major surprises. It has to be a sunny day as well. In this weekend day, Jan was all but resting. Here is the blog for an eventful day:
· Jan continues to sing along the electronic music in Joy’s little piano. of course the lyrics are her own version in Janglish, but she does keep the rhythm.
· Mid morning out of the blue, Jan informed me that she needed to go to the washroom. Usually the routine involves helping her sit in a special chair that couples with the toilet, but not today; she wanted to walk all the way to the washroom as if showing off what she can do. I held her right elbow and with small, tentative steps, she did the rest. She was beaming when she came back to the bed knowing she had started another stage in her recovery.
· A short time later with the help of a walker, she went WALKING up and down the corridor of Wing D. Small steps. Some uncertainty in the left leg. Looking down to her feet. Concentrating on moving both feet in a coordinated way. But walking nonetheless! I gave her a look alike if she was walking on water. She gave me a broad smile back.
· Later, in the afternoon, she and I had a long conversation with complex concepts. She asked me: “Do you know how I feel?” (in relation to her current challenges). She expressed her ideas of feeling somewhat diminished, less than how she knows she was. She said some memories come and go, some days are clearer than others; today, she was aware of what happened and who visited yesterday (she could not remember names but relationships), of the time in the day, of how long she has been at the hospital. She knows she had an operation in her head. She knows some functions are lost in her head like moving all the fingers in her R hand. All this in spurts of a few sentences at a time, and then some unintelligible words.
Way to go Jan!
-Fede
· Jan continues to sing along the electronic music in Joy’s little piano. of course the lyrics are her own version in Janglish, but she does keep the rhythm.
· Mid morning out of the blue, Jan informed me that she needed to go to the washroom. Usually the routine involves helping her sit in a special chair that couples with the toilet, but not today; she wanted to walk all the way to the washroom as if showing off what she can do. I held her right elbow and with small, tentative steps, she did the rest. She was beaming when she came back to the bed knowing she had started another stage in her recovery.
· A short time later with the help of a walker, she went WALKING up and down the corridor of Wing D. Small steps. Some uncertainty in the left leg. Looking down to her feet. Concentrating on moving both feet in a coordinated way. But walking nonetheless! I gave her a look alike if she was walking on water. She gave me a broad smile back.
· Later, in the afternoon, she and I had a long conversation with complex concepts. She asked me: “Do you know how I feel?” (in relation to her current challenges). She expressed her ideas of feeling somewhat diminished, less than how she knows she was. She said some memories come and go, some days are clearer than others; today, she was aware of what happened and who visited yesterday (she could not remember names but relationships), of the time in the day, of how long she has been at the hospital. She knows she had an operation in her head. She knows some functions are lost in her head like moving all the fingers in her R hand. All this in spurts of a few sentences at a time, and then some unintelligible words.
Way to go Jan!
-Fede
Friday, March 17, 2006
Stillness
Friday March 17, 2006
Its 34 days since the evening Jan and I landed in the emergency room of a hospital. It could have been a decade. Both would feel the same. When I crossed the box for today in her calendar on the wall, Jan was looking intensely at what I was doing. She asked me: "what time is it?". It’s ten to eight in the evening, I replied. She said, "I know". Do you know how long you have been in this hospital? I asked trying to find out if she is aware of time and place. She answered: "why do you ask me stupid questions?" I thought to myself: as always, she’s right on. It is stupid to measure time when you have been fighting for your life. It is stupid to worry about time, when your brain is busy with more important tasks such as reconnecting movement to your arm, or re-opening the drawers of speech, or linking your lexicons with your understanding of language, or building the bridges between your mother tongue and other languages. It is stupid to keep time, when, for the first time in many years, you don’t have to rush to work or church or social events. It is stupid to check the time, when all you have to do is something that happens regardless of time: healing. “Nature is in no rush” a blogger wrote. But I live unnaturally, always running in this mad race from one thing to the next, against nature and common sense. The word I received a few weeks ago was: “be still and know…” but all I have done has been run, run, run…Jan, on the other hand, has been still and in her deepest self probably knows something I don’t.
Today, when we were looking at pictures, we found a Brazilian friend in one of them. Jan said a few words in Portuguese. This week, Jan found the drawers where she stores the languages she speaks: French, Spanish, Portuguese. A month ago, the surgeon said that it was possible that Jan had lost her first language, because of the location of the blood clot. In the dozens of hours of stillness Jan found not only other languages, but also her first one. She has been still and knows who God is.
Today, she put her R hand on her lap and contorting her face in concentration, tried to move the middle finger, She moved the others, but the middle is still lost in her brain. She said something like: “Oh man!, I need more work on it” When I touched her R arm, she cried in pain. Her arm is obviously very sensitive. Is it the same sensation one has when our limbs tingle because of lack of circulation?
Today she was very emotional also. When I arrived in the evening, she was crying, half asleep. She said she had a “bad day in her head” When I asked her if she had a bad dream, she replied “yes”. The nurse, a young mexican woman, came and gave her a back rub. Jan was more relaxed for a while. Then, she began talking about how she needed something badly and I didn't. I couldn't make out the meaning of what she wanted and she started to cry. I began pointing things in the room, until I got to the sink. Do you want water? "No". Do you want to wash your face? "No" Do you want to brush your teeth? "Yes! Why is it so difficult to say rigth[...]?" I wished I had a direct connection to her mind. I see her and think, she is Jan, but not the one I am used to...
Please pray for better communication with her and more patience.
-Fede
Its 34 days since the evening Jan and I landed in the emergency room of a hospital. It could have been a decade. Both would feel the same. When I crossed the box for today in her calendar on the wall, Jan was looking intensely at what I was doing. She asked me: "what time is it?". It’s ten to eight in the evening, I replied. She said, "I know". Do you know how long you have been in this hospital? I asked trying to find out if she is aware of time and place. She answered: "why do you ask me stupid questions?" I thought to myself: as always, she’s right on. It is stupid to measure time when you have been fighting for your life. It is stupid to worry about time, when your brain is busy with more important tasks such as reconnecting movement to your arm, or re-opening the drawers of speech, or linking your lexicons with your understanding of language, or building the bridges between your mother tongue and other languages. It is stupid to keep time, when, for the first time in many years, you don’t have to rush to work or church or social events. It is stupid to check the time, when all you have to do is something that happens regardless of time: healing. “Nature is in no rush” a blogger wrote. But I live unnaturally, always running in this mad race from one thing to the next, against nature and common sense. The word I received a few weeks ago was: “be still and know…” but all I have done has been run, run, run…Jan, on the other hand, has been still and in her deepest self probably knows something I don’t.
Today, when we were looking at pictures, we found a Brazilian friend in one of them. Jan said a few words in Portuguese. This week, Jan found the drawers where she stores the languages she speaks: French, Spanish, Portuguese. A month ago, the surgeon said that it was possible that Jan had lost her first language, because of the location of the blood clot. In the dozens of hours of stillness Jan found not only other languages, but also her first one. She has been still and knows who God is.
Today, she put her R hand on her lap and contorting her face in concentration, tried to move the middle finger, She moved the others, but the middle is still lost in her brain. She said something like: “Oh man!, I need more work on it” When I touched her R arm, she cried in pain. Her arm is obviously very sensitive. Is it the same sensation one has when our limbs tingle because of lack of circulation?
Today she was very emotional also. When I arrived in the evening, she was crying, half asleep. She said she had a “bad day in her head” When I asked her if she had a bad dream, she replied “yes”. The nurse, a young mexican woman, came and gave her a back rub. Jan was more relaxed for a while. Then, she began talking about how she needed something badly and I didn't. I couldn't make out the meaning of what she wanted and she started to cry. I began pointing things in the room, until I got to the sink. Do you want water? "No". Do you want to wash your face? "No" Do you want to brush your teeth? "Yes! Why is it so difficult to say rigth[...]?" I wished I had a direct connection to her mind. I see her and think, she is Jan, but not the one I am used to...
Please pray for better communication with her and more patience.
-Fede
Janglish
Lat night the blog didn't work. So here is Thursday's.
Jan's conversations are getting longer. Compared to the few words she spoke a week ago, she now formulates complete sentences. In spite of the "bumps" of not finding the right word to express and idea, she goes on with her conversation with less frustration. Witnessing her recovery of speech is like looking at a butterfly coming out of her cocoon: struggling, streching, using the very struggle to build the strength that will allow her to fly.
On Thursday Jan added the following to her accomplishments:
-When I addressed her in Spanish, she replued in Spanish! then she added with her usual smile: "I can make it work, speak in Spanish" She even tried to pronounce her married surname with the double "rr". Good try!
-We did the same in French, I asked her a couple of questions and she replued in French! "Oui, Je se. Je parle France"
-Again, to continue with her exploration of the many drawers she is opening in her brain, whe I asked her to count with her right hand, she wiggled the thumb, the index and the little finger. She tried hard moving the other two. Well she will try again.
-Joy brough a little electronic piano. Jan played a few cords and when the piano played teh Micky Mouse, Jan followed the song and using other letters spelled M-i-c-k-y-... This was really fun to watch. She was having a good time. Music, it seems, is seated in her heart not in her brain...
-Everyday is an exploration for Jan, activating again the programs needed to move, speak, relate, think. What a wonderful creature she is. I know I love her, I know you love her too, otherwise you would not be reading this.
-Fede
-Fede
Jan's conversations are getting longer. Compared to the few words she spoke a week ago, she now formulates complete sentences. In spite of the "bumps" of not finding the right word to express and idea, she goes on with her conversation with less frustration. Witnessing her recovery of speech is like looking at a butterfly coming out of her cocoon: struggling, streching, using the very struggle to build the strength that will allow her to fly.
On Thursday Jan added the following to her accomplishments:
-When I addressed her in Spanish, she replued in Spanish! then she added with her usual smile: "I can make it work, speak in Spanish" She even tried to pronounce her married surname with the double "rr". Good try!
-We did the same in French, I asked her a couple of questions and she replued in French! "Oui, Je se. Je parle France"
-Again, to continue with her exploration of the many drawers she is opening in her brain, whe I asked her to count with her right hand, she wiggled the thumb, the index and the little finger. She tried hard moving the other two. Well she will try again.
-Joy brough a little electronic piano. Jan played a few cords and when the piano played teh Micky Mouse, Jan followed the song and using other letters spelled M-i-c-k-y-... This was really fun to watch. She was having a good time. Music, it seems, is seated in her heart not in her brain...
-Everyday is an exploration for Jan, activating again the programs needed to move, speak, relate, think. What a wonderful creature she is. I know I love her, I know you love her too, otherwise you would not be reading this.
-Fede
-Fede
Thursday, March 16, 2006
Janglish
"I can make work-talk in Spanish" Jan was talking in Spanish, French and English tonight! Also, she moved more her right hand several times.
Keep praying and expecting to see great things from Jan!
-Fede
Keep praying and expecting to see great things from Jan!
-Fede
Janglish
"I can make work-talk in Spanish" Jan was talking in Spanish, French and English tonight! Alsom she moved more her right hand.
Keep praying and expecting to see great things from Jan.
-Fede
Keep praying and expecting to see great things from Jan.
-Fede
Janglish
Jan is creating her own version of English: Janglish.
Today she was speaking about the everyday stuff such as the "office" when she meant her room, or the "way" referring to the bathroom, or the "picture" when talking about the air vents.
Not only that, today I asked her in Spanish a few questions and she replied in Spanish! the said: "I can make work-talk in Spanish" I asked her to tell me a few things in French and she did! Then, without any request, she moved the thumb, index and pinky in her right hand. With a big laugh we celebrated her accomplishments.
What do you expect for Jan tomorrow?
-Fede
Today she was speaking about the everyday stuff such as the "office" when she meant her room, or the "way" referring to the bathroom, or the "picture" when talking about the air vents.
Not only that, today I asked her in Spanish a few questions and she replied in Spanish! the said: "I can make work-talk in Spanish" I asked her to tell me a few things in French and she did! Then, without any request, she moved the thumb, index and pinky in her right hand. With a big laugh we celebrated her accomplishments.
What do you expect for Jan tomorrow?
-Fede
Janglish
Jan is facing challenges in her healing process: linguistic, physiological, mental and relational. But don't feel sorry for her, because these tests are giving her an opportunity to flex the muscles of her courage, strength and faithfulness. Feel happy with her ad celebrate every step she give in this path. Jan is an explorer of life, a sojourner willing to give her utmost in search of the highest. That is why she saw herself as an eagle: born to fly.
Today, Jan was flying high discovering so many new capabilities in herself that have been dormant for over a month. Here are some from this afternoon:
-When I spoke to her in Spanish, she replied in Spanish. With a smile she told me "I know how to make work-speak Spanish"
-It asked her in French if she could speak French, she replied Oui!, then proceeded to count from one to ten in French, delighted with her discovery of another language.
-As if this was not enough disciveries for one day, we went to the cafeteria with her, she ate a popsicle and a juice.
As for her "Janglish" She calls her room "office", the washroom a "way", and "picture" the air vents by the window. There are other words mangled and not pronounced clearly, If you hear them, please write them in her green book.
Love to all,
-Fede
What will tomorrow bring? I hope for biger and brighter things. What do you hope for Jan?
-Fede
Today, Jan was flying high discovering so many new capabilities in herself that have been dormant for over a month. Here are some from this afternoon:
-When I spoke to her in Spanish, she replied in Spanish. With a smile she told me "I know how to make work-speak Spanish"
-It asked her in French if she could speak French, she replied Oui!, then proceeded to count from one to ten in French, delighted with her discovery of another language.
-As if this was not enough disciveries for one day, we went to the cafeteria with her, she ate a popsicle and a juice.
As for her "Janglish" She calls her room "office", the washroom a "way", and "picture" the air vents by the window. There are other words mangled and not pronounced clearly, If you hear them, please write them in her green book.
Love to all,
-Fede
What will tomorrow bring? I hope for biger and brighter things. What do you hope for Jan?
-Fede
Wednesday, March 15, 2006
Regaining Consciousness
Jan is coming back!. She is regaining the awareness of herself, of others and of time and space. These are things most of us take for granted on our everyday life; for Jan these are major achievements in her recovery from her brain injury. I know a few that without any injury to their brains, go through life unconscious, working, resting, relating without really knowing who they are or who really are those around them.
The new label attached to Jan is an Acquired Brain Injury survivor. Labels help us know what is inside of cans, jars, boxes or files. They are useful shortcuts to know the content, but when we apply them to people, they have a strong "stickiness" that distorts in the eye of the public the real person who lives beyond the label. We just classify them easily using the label and don't bother understanding the person underneath. Jan is Jan even if the system classify her as an ABI.
The real challenge, as previous blogs have indicated, was not to visit Jan during the critical or intensive stages, but how to remain involved with Jan during the months or years that rehabilitation takes. Maybe this is another way of looking at miracles: that love is patient, it does not give up, it has staying power... And if Jan can be the recipient of such love in the long haul, that in itself would be a miracle! On the other hand, Jan may just prove all labels and prognosis wrong with her determination to heal and the concentrated faith from all her friends. Anyway, forgive my digression.
Today Jan entertained over a dozen visitors. In the afternoon, she went with Louise, Sarah and me to the cafeteria and ate a salad. Later she read her greeting cards, checked her mail and talked to people. In the evening Linda, LindaR, Joy, Marianne and Jeannie came to sing. Jan was ecstatic with the music. Seldom she laughs with such satisfaction. Then kept the conversation in her version of "Janglish". More words keep coming out, sometimes in the wrong order or with a different meaning, but the lexicon continues to increase and slowly the meanings become clear.
She will need to do more work with that R hand, and she knows it. But she also knows that it is alive and connected!
She has begun asking about the time, and when she saw this afternoon pictures of herself in the Critical Care Unit connected to all those machines, she was shocked at the realization that that was her! She was surprised to hear that she has been a month in the hospital! Genuine and appropriate reactions to the content of the conversations. Yes, she is conscious. This, hopefully will continue in the following days.
Today, also, she has a special visitor: William Wallace, her 8 month-old cat. She was thrilled to see him and cuddle him in her lap when she went on the wheelchair to the cafeteria. What did Willy William tell Jan? Nobody knows, but in a few minutes the two of them were behaving as if they have never been apart..
She is being prepared to be transferred to a rehabilitation hospital. This can happen at any time (in a few days or a few weeks) without much advance notice. Check before you come to visit.
If you are interested in learning more about ABI, there are a number of sites offering a lot of information on this group. Perhaps the most useful is the local to Toronto:
http://www.abinetwork.ca/home.htm
or the provincial site:
http://www.obia.on.ca/
to learn more about survivors of ABI see the film in CBC Newsworld's "THE LENS". Saturday, March 18, 10 p.m. and 1 a.m. about Paul Nadler's rehabilitation.
With much admiration and love for your prayers and support to us all.
-Fede
The new label attached to Jan is an Acquired Brain Injury survivor. Labels help us know what is inside of cans, jars, boxes or files. They are useful shortcuts to know the content, but when we apply them to people, they have a strong "stickiness" that distorts in the eye of the public the real person who lives beyond the label. We just classify them easily using the label and don't bother understanding the person underneath. Jan is Jan even if the system classify her as an ABI.
The real challenge, as previous blogs have indicated, was not to visit Jan during the critical or intensive stages, but how to remain involved with Jan during the months or years that rehabilitation takes. Maybe this is another way of looking at miracles: that love is patient, it does not give up, it has staying power... And if Jan can be the recipient of such love in the long haul, that in itself would be a miracle! On the other hand, Jan may just prove all labels and prognosis wrong with her determination to heal and the concentrated faith from all her friends. Anyway, forgive my digression.
Today Jan entertained over a dozen visitors. In the afternoon, she went with Louise, Sarah and me to the cafeteria and ate a salad. Later she read her greeting cards, checked her mail and talked to people. In the evening Linda, LindaR, Joy, Marianne and Jeannie came to sing. Jan was ecstatic with the music. Seldom she laughs with such satisfaction. Then kept the conversation in her version of "Janglish". More words keep coming out, sometimes in the wrong order or with a different meaning, but the lexicon continues to increase and slowly the meanings become clear.
She will need to do more work with that R hand, and she knows it. But she also knows that it is alive and connected!
She has begun asking about the time, and when she saw this afternoon pictures of herself in the Critical Care Unit connected to all those machines, she was shocked at the realization that that was her! She was surprised to hear that she has been a month in the hospital! Genuine and appropriate reactions to the content of the conversations. Yes, she is conscious. This, hopefully will continue in the following days.
Today, also, she has a special visitor: William Wallace, her 8 month-old cat. She was thrilled to see him and cuddle him in her lap when she went on the wheelchair to the cafeteria. What did Willy William tell Jan? Nobody knows, but in a few minutes the two of them were behaving as if they have never been apart..
She is being prepared to be transferred to a rehabilitation hospital. This can happen at any time (in a few days or a few weeks) without much advance notice. Check before you come to visit.
If you are interested in learning more about ABI, there are a number of sites offering a lot of information on this group. Perhaps the most useful is the local to Toronto:
http://www.abinetwork.ca/home.htm
or the provincial site:
http://www.obia.on.ca/
to learn more about survivors of ABI see the film in CBC Newsworld's "THE LENS". Saturday, March 18, 10 p.m. and 1 a.m. about Paul Nadler's rehabilitation.
With much admiration and love for your prayers and support to us all.
-Fede
Tuesday, March 14, 2006
Jan delivers a state of the hospital speech
Apologies to the readers of the blog for the blank page on Monday. Today's blog will make up for the missed news.
Jan is a teacher. It is not only her job, it is her call. Even bed-ridden in a hospital, with language challenges and weakness in her right side, she has a way of leaving lessons in everyone's lives. I am constantly learning from her about women, about communication, about faith, and above all about determination and love.
Jim, said prophetically a couple of weeks ago: "everything that's hers will be restored", echoing what P. Piesco also said: The Lord does not do half-done jobs, when He restored people, they were restored completely". When I have to choose between the medical statements based on clinical tendencies and averages on the one hand and on the other the bold, trusting statements of faith, I choose the latter in a blink. Today Jan continued her progress in part out of her sheer determination to get well, in part as the normal healing of her brain, but most of it because of the strong faith of so many friends that believed for Jan and I when we could not.
This morning Jan made statements of 3 or 4 sentences in length syntactically and phonetically correct. This continued in the evening visit during an hour wheelchair tour of every corridor in the hospital. Even in the evening when Steve and Sue came, Jan continued expressing her ideas with a lot more clarity than a few days ago. Four weeks ago, there were serious reservations about Jan's ability to talk at all!. The medical staff commented that it was possible that she had lost her ability to speak in the hemorrhage, if she could speak, it was possible that she had lost English. Well, tonight she was speaking in proper English.
Because of the place where the aneurysm happened, it was also anticipated that she would not move her right hand. Today, when I asked her to show me one finger in her right hand, she streched the five fingers with a huge grin on her face. She said, "I know, it is going back." Hoorray for Jan's right hand! I asked her to give me five and she did... With her right hand! It is weak and needs a lot of rehabilitation but it is there!
Jan also was moved to a private room D5-57. Her comment when we got into the room: "Wow! Look at all the space! Nice" After sending Steve and Sue home, she asked me to cuddle with her in her narrow bed. I tell you, that was a risky proposition, but she fell asleep in my arms. These ten minutes or so were worth all the Queen's jewels.
Also, as of tonight, there are no more sitters. When we told her, she was distressed. Eventually, she calmed down. The medical staff is pushing her to become more independent.
With so many good news, I went home with a heart overflowing with joy. Thank you for being there for Jan and the family, but remember, that there is still a long road ahead.
-Fede
Jan is a teacher. It is not only her job, it is her call. Even bed-ridden in a hospital, with language challenges and weakness in her right side, she has a way of leaving lessons in everyone's lives. I am constantly learning from her about women, about communication, about faith, and above all about determination and love.
Jim, said prophetically a couple of weeks ago: "everything that's hers will be restored", echoing what P. Piesco also said: The Lord does not do half-done jobs, when He restored people, they were restored completely". When I have to choose between the medical statements based on clinical tendencies and averages on the one hand and on the other the bold, trusting statements of faith, I choose the latter in a blink. Today Jan continued her progress in part out of her sheer determination to get well, in part as the normal healing of her brain, but most of it because of the strong faith of so many friends that believed for Jan and I when we could not.
This morning Jan made statements of 3 or 4 sentences in length syntactically and phonetically correct. This continued in the evening visit during an hour wheelchair tour of every corridor in the hospital. Even in the evening when Steve and Sue came, Jan continued expressing her ideas with a lot more clarity than a few days ago. Four weeks ago, there were serious reservations about Jan's ability to talk at all!. The medical staff commented that it was possible that she had lost her ability to speak in the hemorrhage, if she could speak, it was possible that she had lost English. Well, tonight she was speaking in proper English.
Because of the place where the aneurysm happened, it was also anticipated that she would not move her right hand. Today, when I asked her to show me one finger in her right hand, she streched the five fingers with a huge grin on her face. She said, "I know, it is going back." Hoorray for Jan's right hand! I asked her to give me five and she did... With her right hand! It is weak and needs a lot of rehabilitation but it is there!
Jan also was moved to a private room D5-57. Her comment when we got into the room: "Wow! Look at all the space! Nice" After sending Steve and Sue home, she asked me to cuddle with her in her narrow bed. I tell you, that was a risky proposition, but she fell asleep in my arms. These ten minutes or so were worth all the Queen's jewels.
Also, as of tonight, there are no more sitters. When we told her, she was distressed. Eventually, she calmed down. The medical staff is pushing her to become more independent.
With so many good news, I went home with a heart overflowing with joy. Thank you for being there for Jan and the family, but remember, that there is still a long road ahead.
-Fede
Sunday, March 12, 2006
You are dismissed...
One of the things Jan has mastered is the ability to dismiss me (and I suspect others as well) when she has had enough visiting :) She either closes her eyes or she tells me "Why are you here? Go home now" Hearing her talk a bit more every day is such a pleasure, that even when I am dismissed, it rings like music to my ears.
Being optimistic by what Jan has achieved in four weeks is good for her mind and ours. The facts, however are sobering : she cannot use her right side, which leaves her only her left hand and leg to do everything, from eating to sitting to walking. If you haven't done it, try right now moving around on only one leg and one arm. As you can imagine, this is a major source of frustration for Jan who is used to be totally independent and mobile. Another fact is that even though she is able to formulate words, she still has difficulty communicating all of her ideas clearly. She says a sentence with total clarity and then the next is mixed words with no clear meaning or garbled talk. She can think what she wants to say, but she cannot express it all right now.
Two challenges, both, for Jan and for all of you who support her. For us, a challenge to keep praying for very specific things; for her, to keep the focus and determination to find a new neuropath to do what she needs to do.
Thanks to those in Spain, Mexico, Romania, Florida, California, Alberta, Manitoba and many cities in Ontario who consistently pray for Jan and stop to remember her sruggle to come back.
-Fede
Being optimistic by what Jan has achieved in four weeks is good for her mind and ours. The facts, however are sobering : she cannot use her right side, which leaves her only her left hand and leg to do everything, from eating to sitting to walking. If you haven't done it, try right now moving around on only one leg and one arm. As you can imagine, this is a major source of frustration for Jan who is used to be totally independent and mobile. Another fact is that even though she is able to formulate words, she still has difficulty communicating all of her ideas clearly. She says a sentence with total clarity and then the next is mixed words with no clear meaning or garbled talk. She can think what she wants to say, but she cannot express it all right now.
Two challenges, both, for Jan and for all of you who support her. For us, a challenge to keep praying for very specific things; for her, to keep the focus and determination to find a new neuropath to do what she needs to do.
Thanks to those in Spain, Mexico, Romania, Florida, California, Alberta, Manitoba and many cities in Ontario who consistently pray for Jan and stop to remember her sruggle to come back.
-Fede
Saturday, March 11, 2006
Jan was wheeling outdoors
In spite of a sitter bent on impossing her views on Jan, the day still brought joy to Jan. In the afternoon, the family came for a visit and Jan was allowed to be wheeled by her niece Elizabeth, her parents Louise and Tony, and Dad and I joined the march outside to enjoy "real air" and the warmth of the afternoon sunshine. This is the first time Jan is outside of the walls of the hospital since February 10, 2006. She sat quietly in her chair, basking in the sun. 15-20 minutes later she just said "I am ready to go". Small things can bring the greatest joy in the company of loved ones.
Jan's progress is more evident to those who see her at bigger intervals. It is evident how she is expanding her vocabulary and how she is constructing better sentences. Communication is improving because of this. Nevertheless, she still has to really start the speech language therapy and the physiotherapy will become more strict in the following days. According the the medical staff, during the next week, she will have recovered spontaneously about 80% of what she will recover. The other 20% will come from therapy and the determination of Jan's mind to heal. The prognosis from the family of faith is that she will be restored completetly.
Please remember Jan in your meditations and prayers, and help us encourage her to do what she needs to do to heal.
-Fede
Jan's progress is more evident to those who see her at bigger intervals. It is evident how she is expanding her vocabulary and how she is constructing better sentences. Communication is improving because of this. Nevertheless, she still has to really start the speech language therapy and the physiotherapy will become more strict in the following days. According the the medical staff, during the next week, she will have recovered spontaneously about 80% of what she will recover. The other 20% will come from therapy and the determination of Jan's mind to heal. The prognosis from the family of faith is that she will be restored completetly.
Please remember Jan in your meditations and prayers, and help us encourage her to do what she needs to do to heal.
-Fede
Friday, March 10, 2006
Jan was dancing in the corridor of Wing D5
Ever felt like dancing wherever the urge to dance hits you? Jan went for a wheelchair ride this evening with me. This counts as a date, and she owed me one.
She even changed her hospital gown for a pajamas and a Jan's blue house coat, put on her red hairband and off we went!. The corridors were deserted at this time, except for the occasional staffer, so I asked Jan if she wanted to dance with me. She smiled and rolled her eyes. I started singing the Impossible Dream, and gently turning her wheelchair chair. She had a big grin on her face... I remembered happy times.
We went to the cafeteria, bought some Italian wedding soup and fruit juice. We shared the soup. Every time I asked her if she liked it, she said: Ahhh!, Yes. It was so moving to see how much she appreciated this. When I asked her is she liked the dance, she cried. It must be so frustrating not to be able to do something as simple as dance. I felt humbled and ashamed for taking so many things for granted in my life.
Tonight, I felt very happy to dance with Jan. The next time you hear some music, please dance in Jan's honour and think about the blessing of being able to dance.
-Fede
She even changed her hospital gown for a pajamas and a Jan's blue house coat, put on her red hairband and off we went!. The corridors were deserted at this time, except for the occasional staffer, so I asked Jan if she wanted to dance with me. She smiled and rolled her eyes. I started singing the Impossible Dream, and gently turning her wheelchair chair. She had a big grin on her face... I remembered happy times.
We went to the cafeteria, bought some Italian wedding soup and fruit juice. We shared the soup. Every time I asked her if she liked it, she said: Ahhh!, Yes. It was so moving to see how much she appreciated this. When I asked her is she liked the dance, she cried. It must be so frustrating not to be able to do something as simple as dance. I felt humbled and ashamed for taking so many things for granted in my life.
Tonight, I felt very happy to dance with Jan. The next time you hear some music, please dance in Jan's honour and think about the blessing of being able to dance.
-Fede
Thursday, March 09, 2006
Communication Ramps and Repairs
Jan had an uneventful day -lots of sleep-. Walter visited in the morning Mom and Louise visited in the afternoon and talked, laughed and watched Jan have dinner by herself. She thinks the food in this "joint" is not gourmet, so she objected to the unsweetened thickened cranberry juice (tastes a bit like a jawbreaker...).
The Speech and Language Therapist made a suggestion to start a "speech" journal where we can write down the dialogues Jan has with us. This would give her a broader view of Jan's progress. The journal is the green book with Jan's name on the back.
The therapist also told us that we can help Jan improve her communication by using repairs and ramps, simple talking tools when talking to her:
-To repair communication breakdowns we can build communication ramps: Jan can pronounce a few words very clearly, then the words become unclear. To help her, repeat the words you hear clearly and invite her to continue. This way she does not have to start from the beginning and her feelings of frustration evaporate.
These specific, concrete tools will make a greater joy talking with Jan while she makes progress in her recovery.
Thanks for joining in this journey.
-Fede
The Speech and Language Therapist made a suggestion to start a "speech" journal where we can write down the dialogues Jan has with us. This would give her a broader view of Jan's progress. The journal is the green book with Jan's name on the back.
The therapist also told us that we can help Jan improve her communication by using repairs and ramps, simple talking tools when talking to her:
-To repair communication breakdowns we can build communication ramps: Jan can pronounce a few words very clearly, then the words become unclear. To help her, repeat the words you hear clearly and invite her to continue. This way she does not have to start from the beginning and her feelings of frustration evaporate.
These specific, concrete tools will make a greater joy talking with Jan while she makes progress in her recovery.
Thanks for joining in this journey.
-Fede
Wednesday, March 08, 2006
Iconoclast
Have you ever been in a public place with your loved one wanting to talk private feelings and thoughts, and feel that everyone is listening?
Before I share with you a series of auspicious events, I have to start by saying that Jan and I are iconoclasts at heart (translation: we live beyond the realm of public opinion, we try to live our lives not ruled by what other say or think but by our deepest beliefs). As a matter of fact, Jan is one of the few persons I know to “above all, is true to herself [and to God]” regardless of whether people agree with her choices and ideas. And this quality wraps very much our relationship.
I arrived this morning when Jan was eating her breakfast by herself! (notice the bold words, these are the happy events). Ruth, the sitter, was sitting close but not helping. Jan with the spoon properly placed in her hand, was making sweeping movements from the food tray to her mouth, slow and precise. Her hair was untied, shinny and clean. From the right side, she looked like any other morning at home, when she is getting ready to go to work. She greeted me with a nod. A few minutes latter she closed her eyes. I asked her if she wanted to read her mail: greeting cards, bills, fundraising brochures, junk mail. She read the card from her friend Donna. She saw the kitten on the cover and smiled. Her eyes scanned from left to right the words inside. She stopped at the name for a few seconds, then placed the card on the tray and asked Ruth for something. We could not make what she wanted, so she pushed the food table away, stood up and took two steps to get to the bed. The right leg looked a bit weak, but with the left foot she did the rest of the work. She turned around at the edge of the bed and sat down, then lay on her back, fixed the pillow cover and made herself comfortable. She did all these actions, by herself, in a matter of factly way. Ruth then offered a blanket.
I pulled a chair and began talking to her. I remembered reading that it is best not to stand on the side of the bed, so she does not become agitated. We were at eye level. She was awake but with her eyes closed. I told her I would love to know what was in her mind. She opened her eyes and began talking complete sentences in her guttural voice, part of which were not audible because of the noise made by the nurse and the neighbour in the next bed. I told her they were too noisy and rolled my eyes. She smiled. I asked her to continue, I asked her if she knew that I love her, looking at her in the eyes. While she continued talking, some pain showed on her face as if she was aware of her current situation (Notice that the content of the conversation is private), we kept the conversation going for 15 or 20 minutes. My back was towards the door. Suddenly she stopped; she was looking towards the door. I turned around and saw standing at the door the Social Worker, the physiotherapist, the sitter and the speech and language therapist. Someone had gone to tell them that Jan was talking!
Unbeknownst to me they were listening to my part of my conversation with Jan, obviously delighted. They encouraged Jan to go on. This was really an improvement from yesterday. Jan became overwhelmed, too many people, too much stimulation, too many emotions. Some left happy to have witnessed her progress. I pushed aside my feelings of having been intruded upon in a private conversation with my wife, reframed, and joined in the celebration of these little steps to start a climb of the giant mountains ahead.
The speech therapist stayed to do some further cognitive tests. Asked Jan if she knew where she was, Jan answered: No. Asked Jan if she knew who I was, Jan replied with a yes and then said some other words, but the speech was becoming garbled. Jan went to sleep with a smile holding my hand. The therapist encouraged us to start a Speech Journal where we can record what she does, so the therapist can obtain more data on Jan’s progress.
Even in her recovery, Jan continues to challenge (this is a word she likes) the statistics and averages. An iconoclast at the core, she will go through this road in her own way, only pausing to ask The Lord for grace.
-Fede
Before I share with you a series of auspicious events, I have to start by saying that Jan and I are iconoclasts at heart (translation: we live beyond the realm of public opinion, we try to live our lives not ruled by what other say or think but by our deepest beliefs). As a matter of fact, Jan is one of the few persons I know to “above all, is true to herself [and to God]” regardless of whether people agree with her choices and ideas. And this quality wraps very much our relationship.
I arrived this morning when Jan was eating her breakfast by herself! (notice the bold words, these are the happy events). Ruth, the sitter, was sitting close but not helping. Jan with the spoon properly placed in her hand, was making sweeping movements from the food tray to her mouth, slow and precise. Her hair was untied, shinny and clean. From the right side, she looked like any other morning at home, when she is getting ready to go to work. She greeted me with a nod. A few minutes latter she closed her eyes. I asked her if she wanted to read her mail: greeting cards, bills, fundraising brochures, junk mail. She read the card from her friend Donna. She saw the kitten on the cover and smiled. Her eyes scanned from left to right the words inside. She stopped at the name for a few seconds, then placed the card on the tray and asked Ruth for something. We could not make what she wanted, so she pushed the food table away, stood up and took two steps to get to the bed. The right leg looked a bit weak, but with the left foot she did the rest of the work. She turned around at the edge of the bed and sat down, then lay on her back, fixed the pillow cover and made herself comfortable. She did all these actions, by herself, in a matter of factly way. Ruth then offered a blanket.
I pulled a chair and began talking to her. I remembered reading that it is best not to stand on the side of the bed, so she does not become agitated. We were at eye level. She was awake but with her eyes closed. I told her I would love to know what was in her mind. She opened her eyes and began talking complete sentences in her guttural voice, part of which were not audible because of the noise made by the nurse and the neighbour in the next bed. I told her they were too noisy and rolled my eyes. She smiled. I asked her to continue, I asked her if she knew that I love her, looking at her in the eyes. While she continued talking, some pain showed on her face as if she was aware of her current situation (Notice that the content of the conversation is private), we kept the conversation going for 15 or 20 minutes. My back was towards the door. Suddenly she stopped; she was looking towards the door. I turned around and saw standing at the door the Social Worker, the physiotherapist, the sitter and the speech and language therapist. Someone had gone to tell them that Jan was talking!
Unbeknownst to me they were listening to my part of my conversation with Jan, obviously delighted. They encouraged Jan to go on. This was really an improvement from yesterday. Jan became overwhelmed, too many people, too much stimulation, too many emotions. Some left happy to have witnessed her progress. I pushed aside my feelings of having been intruded upon in a private conversation with my wife, reframed, and joined in the celebration of these little steps to start a climb of the giant mountains ahead.
The speech therapist stayed to do some further cognitive tests. Asked Jan if she knew where she was, Jan answered: No. Asked Jan if she knew who I was, Jan replied with a yes and then said some other words, but the speech was becoming garbled. Jan went to sleep with a smile holding my hand. The therapist encouraged us to start a Speech Journal where we can record what she does, so the therapist can obtain more data on Jan’s progress.
Even in her recovery, Jan continues to challenge (this is a word she likes) the statistics and averages. An iconoclast at the core, she will go through this road in her own way, only pausing to ask The Lord for grace.
-Fede
Tuesday, March 07, 2006
PS
I forgot to ask you. What would you say to Jan or do with her when Spring starts? What should she look for this Spring?: a walk in the park, coffee in the afternoon, a shopping expedition, a quiet visit, a dinner in a Kurdish restaurant, a drive to the lake...
-Fede
-Fede
Sleeping beauty
Today was Jan's day off.
She was asleep in the morning when I arrived. She woke up just for a second and smiled. I asked her if she wanted to hear some music. She didn't reply. I put on a CD but she quickly told me: No, no! and went back to sleep. Well that was a short visit. I left comforted with the fact that she was sleeping well.
She seems to have slept most of the day. Good for her! I noticed a schedule of activities on the wall written by the physio therapist. It details activities for every hour of the day. I assume this will start tomorrow. This is part of helping her to have some structure on her time. This is when the real work will start.
Please continue to pray for her determination to continue the healing.
Thanks for your constant support in person and in spirit.
-Fede
She was asleep in the morning when I arrived. She woke up just for a second and smiled. I asked her if she wanted to hear some music. She didn't reply. I put on a CD but she quickly told me: No, no! and went back to sleep. Well that was a short visit. I left comforted with the fact that she was sleeping well.
She seems to have slept most of the day. Good for her! I noticed a schedule of activities on the wall written by the physio therapist. It details activities for every hour of the day. I assume this will start tomorrow. This is part of helping her to have some structure on her time. This is when the real work will start.
Please continue to pray for her determination to continue the healing.
Thanks for your constant support in person and in spirit.
-Fede
Monday, March 06, 2006
What a day
Hooraay! Bravo, bravisimo!! for Jan, who is fighting -and winning- all these battles of those things we take for granted... never again! Next time I have a sip of water I will remember what it meant today for Jan. Next time I write a word, I will remember the effort Jan made today to write something for us. As I type this blog, I remember Jan's smile when she typed Hi!, and feel truly thankful for such everyday gifts: walk, talk, write, swallow.
Janita, gracias! for the beautiful gift of your voice and your words. One day soon you will celebrate with us.
-Fede
Janita, gracias! for the beautiful gift of your voice and your words. One day soon you will celebrate with us.
-Fede
"Happy Happy Joy Joy!" (*) She eats! She speaks!
Some have been wondering "where's Steve?" Steve has had a cold and so was staying away from the hospital. But I'm back!
What wonderful news today!
She Eats
Two nights ago Jan pulled her NG (feeding) tube out repeatedly. It was a bad night for her and for her nurses and sitter. But perhaps she was just trying to tell them something: "I don't need it anymore!"
They eventually gave up putting it back in, and started feeding her "thickened liquids" - "Thickened Cranberry Juice Cocktail" first and later "Thickened Lemon Water". I watched the nurse giving her the lemon water. The nurse would spoon some out of a cup and bring the spoon close to Jan. Jan would grab the spoon like a starving person and shove it in her mouth. She would carefully lick off every drop from the spoon, and then any that had slopped on her hand.
And today, today, she ate her own lunch!
It was a mashed lunch: soup, mashed potatoes, mashed peas, etc., with mousse for dessert. But it is her first solid food! So, no more NG tube up the nose.
In fact, when I walked in to her room last night, after they gave up on reinserting her tubes (she pulled her IV line out too), I saw my sister with nothing attached to her for the first time in three weeks. It was great.
She Speaks
Fede has mentioned Jan's typing the word 'Hi' on Angie and Barry's laptop. And her attempts to speak to him on the phone while I was visiting her.
During that same visit, she pulled me so close that her lips where touching my ear and whispered a sentence to me. It was just a comment about something in the room, but it was a whole sentence, which I understood! I wrote down what I'd heard and showed it to her: is this what you said? She patted my chest and nodded a yes.
Then she tried to write a request to me. She took the pen in her left hand and wrote "Please call ????? people". At least, I think that was it. The word please was clear enough that I'm sure. After that, her writing became too blurred, eventually degrading into a series of loops only. I suggested that she try to print, one letter at a time, but she ignored that. Who knows what pathways in her brain are working now and which aren't? Maybe cursive writing was all she could access at the time. It was a strange situation, in which I was ecstatic that she wrote the word please so I could understand it, while she was frustrated to tears that she couldn't get rest out.
Today, when Louise walked into Jan's room, she was greeted by Jan's hoarse "Hi"!
Such progress! I'm on cloud nine. What a birthday present to a certain someone who is very closely related to Jan, Louise and me. (Hint: it's not Mom.)
Thank you thank you thank you to all of you for your unwavering support and prayers for Jan. Please keep up the good work, along with a huge dose of prayers of thanks, too.
-Steve
(*) The title of a song sung by two cartoon characters that Jan finds hilarious: Ren & Stimpy.
The chorus goes like this:
Happy Happy Joy Joy Happy Happy Joy Joy
Happy Happy Joy Joy Happy Happy Joy Joy
Happy Happy Joy Joy Happy Happy Joy Joy
Happy Happy Joy Joy Joy!
What wonderful news today!
She Eats
Two nights ago Jan pulled her NG (feeding) tube out repeatedly. It was a bad night for her and for her nurses and sitter. But perhaps she was just trying to tell them something: "I don't need it anymore!"
They eventually gave up putting it back in, and started feeding her "thickened liquids" - "Thickened Cranberry Juice Cocktail" first and later "Thickened Lemon Water". I watched the nurse giving her the lemon water. The nurse would spoon some out of a cup and bring the spoon close to Jan. Jan would grab the spoon like a starving person and shove it in her mouth. She would carefully lick off every drop from the spoon, and then any that had slopped on her hand.
And today, today, she ate her own lunch!
It was a mashed lunch: soup, mashed potatoes, mashed peas, etc., with mousse for dessert. But it is her first solid food! So, no more NG tube up the nose.
In fact, when I walked in to her room last night, after they gave up on reinserting her tubes (she pulled her IV line out too), I saw my sister with nothing attached to her for the first time in three weeks. It was great.
She Speaks
Fede has mentioned Jan's typing the word 'Hi' on Angie and Barry's laptop. And her attempts to speak to him on the phone while I was visiting her.
During that same visit, she pulled me so close that her lips where touching my ear and whispered a sentence to me. It was just a comment about something in the room, but it was a whole sentence, which I understood! I wrote down what I'd heard and showed it to her: is this what you said? She patted my chest and nodded a yes.
Then she tried to write a request to me. She took the pen in her left hand and wrote "Please call ????? people". At least, I think that was it. The word please was clear enough that I'm sure. After that, her writing became too blurred, eventually degrading into a series of loops only. I suggested that she try to print, one letter at a time, but she ignored that. Who knows what pathways in her brain are working now and which aren't? Maybe cursive writing was all she could access at the time. It was a strange situation, in which I was ecstatic that she wrote the word please so I could understand it, while she was frustrated to tears that she couldn't get rest out.
Today, when Louise walked into Jan's room, she was greeted by Jan's hoarse "Hi"!
Such progress! I'm on cloud nine. What a birthday present to a certain someone who is very closely related to Jan, Louise and me. (Hint: it's not Mom.)
Thank you thank you thank you to all of you for your unwavering support and prayers for Jan. Please keep up the good work, along with a huge dose of prayers of thanks, too.
-Steve
(*) The title of a song sung by two cartoon characters that Jan finds hilarious: Ren & Stimpy.
The chorus goes like this:
Happy Happy Joy Joy Happy Happy Joy JoyHappy Happy Joy Joy Happy Happy Joy Joy
Happy Happy Joy Joy Happy Happy Joy Joy
Happy Happy Joy Joy Joy!
Sunday, March 05, 2006
Jan's first words
This is a quick blog to share with you the excitement of today:
-In response to a note in a lap top from Angie (her cousin) saying: Hi, Jan I miss you, Jan wrote: Hi.
-Later in the day, Jan pulled out again the NG tube twice (she did it last night too), So the nurses decided to keep it off. Since this is was the only way she could eat, now she has to actually swallow in order to drink some thick nutritional solution.
-In the evening, as I was going for my last visit, Steve called and ask me to speak to Jan over the phone. She whispered several words of which I could make clearly a few: Please call....love...my. When I arrived at her room, she continued the conversation for a good five minutes, whispering something that neither Steve or I could understand. It must be very frustrating to have clear ideas in her mind of what she wants to say, and not be able to do it. Nonetheless. She is beginning to speak!
Thank you all who have sustained and kept Jan constantly in your hearts and minds in so many ways with so many tools and prayers. I am certain she will know of your persistence.
-feed
-In response to a note in a lap top from Angie (her cousin) saying: Hi, Jan I miss you, Jan wrote: Hi.
-Later in the day, Jan pulled out again the NG tube twice (she did it last night too), So the nurses decided to keep it off. Since this is was the only way she could eat, now she has to actually swallow in order to drink some thick nutritional solution.
-In the evening, as I was going for my last visit, Steve called and ask me to speak to Jan over the phone. She whispered several words of which I could make clearly a few: Please call....love...my. When I arrived at her room, she continued the conversation for a good five minutes, whispering something that neither Steve or I could understand. It must be very frustrating to have clear ideas in her mind of what she wants to say, and not be able to do it. Nonetheless. She is beginning to speak!
Thank you all who have sustained and kept Jan constantly in your hearts and minds in so many ways with so many tools and prayers. I am certain she will know of your persistence.
-feed
Saturday, March 04, 2006
Jan on Wheels
I got a good surprise this morning. I found Jan awake with the sitter and the nurse. Routine hygiene and some feeding through that dreadful NG tube. Imagine having breakfast, lunch and dinner without even tasting what you are eating!
The wheelchair.
Jan and I went to the cafeteria in the M wing. That's right, she was allowed to go on a wheelchair with me to this public place. On the way we looked t pictures on the walls, to the snow in the green areas through the windows in the first floor and to people. Now and then, she would touch the glass of the doors. At the cafeteria, she sat with hear head to one side. I showed her pictures on my laptop. She smiled when looking at relatives from close and far, friends and herself. She became uncomfortable. I asked her if she wanted to go. She nodded. We went up and down the corridors, stopping everytime she signed. I stopped a the Second Cup and bought a coffee. She wanted to taste it, so I dipped a stick on my coffee and put it in her mouth. She grimaced like if to say: How can you drink this junk? When we passed a coke machine, she pointed out to it insistently. I asked if she was thirsty. She nodded. I bought a bottle of water for her. A soon as I gave it to her, she put it in her mouth trying to open it. Not sure if I should give her some water, I put some in the cap. She wasn't happy with it, but drank it anyway. she coughed a bit and then asked for more.
Swallowing. We went up the elevator to her room. We found two friends visiting. She sat in the wheelchair at the visitors' lounge for a few minutes with them. I told the sitter that Jan was thirsty, she brought a little stick with a sponge and a cup of water. With this, Jan took a few sips and coughing, she swallowed the water. Small amounts, but it has begun.
Writing. After lunch, she was talking to Louise and the sitter, they gave her a pen and the notebook, then asked her to write. She scribbled some characters: H, I J, N. What a delight! This is an enormous effort, and she was pleased.
Good news for a sunny Saturday. She is mobile, swallowing, and writing.
Please keep supporting her with all you got. This is the beginning of a long race.
-Fede
The wheelchair.
Jan and I went to the cafeteria in the M wing. That's right, she was allowed to go on a wheelchair with me to this public place. On the way we looked t pictures on the walls, to the snow in the green areas through the windows in the first floor and to people. Now and then, she would touch the glass of the doors. At the cafeteria, she sat with hear head to one side. I showed her pictures on my laptop. She smiled when looking at relatives from close and far, friends and herself. She became uncomfortable. I asked her if she wanted to go. She nodded. We went up and down the corridors, stopping everytime she signed. I stopped a the Second Cup and bought a coffee. She wanted to taste it, so I dipped a stick on my coffee and put it in her mouth. She grimaced like if to say: How can you drink this junk? When we passed a coke machine, she pointed out to it insistently. I asked if she was thirsty. She nodded. I bought a bottle of water for her. A soon as I gave it to her, she put it in her mouth trying to open it. Not sure if I should give her some water, I put some in the cap. She wasn't happy with it, but drank it anyway. she coughed a bit and then asked for more.
Swallowing. We went up the elevator to her room. We found two friends visiting. She sat in the wheelchair at the visitors' lounge for a few minutes with them. I told the sitter that Jan was thirsty, she brought a little stick with a sponge and a cup of water. With this, Jan took a few sips and coughing, she swallowed the water. Small amounts, but it has begun.
Writing. After lunch, she was talking to Louise and the sitter, they gave her a pen and the notebook, then asked her to write. She scribbled some characters: H, I J, N. What a delight! This is an enormous effort, and she was pleased.
Good news for a sunny Saturday. She is mobile, swallowing, and writing.
Please keep supporting her with all you got. This is the beginning of a long race.
-Fede
Two glimpses of healing
Friday nights have taken a different meaning. Today is exactly three weeks since Jan and I called 911 and fell unexpectedly into this strange reality. Some of my friends have called it a "dark valley". Sometimes, it feels more like an isolation cell 15 meters underground, a cell with no number, where we are prisoners without a name wondering what was the crime for which we have been dragged here. Some other times, I can see more light, I can bask in the warmth of hope, the tenderness of friendly love and genuine concern for Jan's health. Nevertheless, whatever the feeling I may navigate on particular day, I make a balance at the end of each day of the good and the bad, the love and the pain each day brings. I shared with my dear friends a couple of nights ago that there is a lesson in all this, which I still cannot understand. A lesson about love. Yes, my love for Jan is being tested. Your love for us too. Our love for all of you. How far can it go? How many more weeks can we keep sending healing love to Jan? Will it cease at some point? What form can it take? What words can we use to describe it? What deeds will deliver it? Do you know the edges of your love? Do you know how much you can love Jan? Good questions for a Friday night.
Tonight, Friday night, Jan and I spend a few hours together, looking at each other in silence. At times, I did some talking, at times she slept. At one point, I made a call using the phone in her room. She looked at me with interest. When I finished the call, I asked her if she wanted to use the phone herself. She nodded in approval. I called Omar, our son, and asked him to just talk to Jan, then passed the receiver to her. She took it from my hand and placed it correctly in her left ear. She then smiled when she heard the voice. She nodded. She smiled more. She began moving her lips: eeeoooaaaah, uuuaaaaoooh. No sound came out of her mouth other than a muted aspiration, but her lips were moving, trying to form words. This, my dear friends, lit a flame of hope in my heart and made me aware of how much I love Jan. This went on for about 3 to 4 minutes. The nurse came in and encouraged Jan to keep up these good efforts. She continued smiling and then, without any warning, she felt asleep.
A second form of communication happened when I was about to leave to go home. I told her: "I miss you, get well and come home", she nodded in agreement, put her left hand on her chest and then put it on my chest. Then, with a sad smile she closed her eyes. I went home with a mixed heart. Happy that she is alive and for the healing signs, sad for the realization that she has to literally reinvent the wheel from square one, and that this will take time. Here the second thought for a Friday night: the only way out of this place is by being patient.
"Look, I make all things new" ...starting with our characters...
-Fede
Tonight, Friday night, Jan and I spend a few hours together, looking at each other in silence. At times, I did some talking, at times she slept. At one point, I made a call using the phone in her room. She looked at me with interest. When I finished the call, I asked her if she wanted to use the phone herself. She nodded in approval. I called Omar, our son, and asked him to just talk to Jan, then passed the receiver to her. She took it from my hand and placed it correctly in her left ear. She then smiled when she heard the voice. She nodded. She smiled more. She began moving her lips: eeeoooaaaah, uuuaaaaoooh. No sound came out of her mouth other than a muted aspiration, but her lips were moving, trying to form words. This, my dear friends, lit a flame of hope in my heart and made me aware of how much I love Jan. This went on for about 3 to 4 minutes. The nurse came in and encouraged Jan to keep up these good efforts. She continued smiling and then, without any warning, she felt asleep.
A second form of communication happened when I was about to leave to go home. I told her: "I miss you, get well and come home", she nodded in agreement, put her left hand on her chest and then put it on my chest. Then, with a sad smile she closed her eyes. I went home with a mixed heart. Happy that she is alive and for the healing signs, sad for the realization that she has to literally reinvent the wheel from square one, and that this will take time. Here the second thought for a Friday night: the only way out of this place is by being patient.
"Look, I make all things new" ...starting with our characters...
-Fede
Thursday, March 02, 2006
Flying
Those who know Jan know well that the call in her life was to soar like an eagle. Last night Jan remembered something about soaring and climbed out of bed, after pulling the IV tube, the feeding tube and the bladder tube off her body. Fortunately she didn't go far. After some discussion, the staff decided to keep her off the IV and the bladder tube.
This morning, the family found Jan back in her bed, less several tubes. She has been sore from this all day. She was restless, and withdrawn. At times she cried of pain. She is beginning to make a wider variety of guttural noises. Her attention is stronger and her responses are clearer to questions about comfort.
The nurse gave her some painkillers and she fell asleep.
Looking at her sleep peacefully is priceless. I am deeply moved to see the Jan we all know trying to come back. She is referred to as a loyal sibling, a loving friend, a mighty warrior, a truth teller, a challenger of mediocrity, a wondeful singer, a leader, a unique teacher, a beloved being, a woman who somehow had the ability to reach into many hearts, a beautiful wife, a true friend. She is all that and much more.
Her vitals are normal. Oblivious to the concerns of the world her brain is working at its own pace to reconnect functions to limbs and organs, feelings and memories, to define the world again in her own terms. Piano, pianissimo. As Carol said: nature is in no rush.
I am writing this from Jan's bedside through a wireless network for guests. Somehow, Jan's friends visit to the Chapel last night rekindled hope. There have been many lessons so far. There will be more to come when Jan is again back among us.
-Fede
This morning, the family found Jan back in her bed, less several tubes. She has been sore from this all day. She was restless, and withdrawn. At times she cried of pain. She is beginning to make a wider variety of guttural noises. Her attention is stronger and her responses are clearer to questions about comfort.
The nurse gave her some painkillers and she fell asleep.
Looking at her sleep peacefully is priceless. I am deeply moved to see the Jan we all know trying to come back. She is referred to as a loyal sibling, a loving friend, a mighty warrior, a truth teller, a challenger of mediocrity, a wondeful singer, a leader, a unique teacher, a beloved being, a woman who somehow had the ability to reach into many hearts, a beautiful wife, a true friend. She is all that and much more.
Her vitals are normal. Oblivious to the concerns of the world her brain is working at its own pace to reconnect functions to limbs and organs, feelings and memories, to define the world again in her own terms. Piano, pianissimo. As Carol said: nature is in no rush.
I am writing this from Jan's bedside through a wireless network for guests. Somehow, Jan's friends visit to the Chapel last night rekindled hope. There have been many lessons so far. There will be more to come when Jan is again back among us.
-Fede
Wednesday, March 01, 2006
A note of hope
I received the following in an email, with the request to post it on the blog. It is well worth the read. -Steve
This is Jan's singing teacher writing. I have been following the blog entries. I haven't entered my own comments until now as I have sent emails to Steve and to Jan feeling I could better express my feelings in that way.
At this time, I would like to pass on something most hopeful to the Jan fans: I have spoken with a number of people about Jan's condition over the past 2 weeks. When I hear the words "speech centre killed in brain aneurysm," my heart breaks for complete strangers, let alone someone I know and care about.
In this past 5 days I have heard a similar story from 3 of my friends who know of someone who has survived Jan's type of haemorrhage. These individuals were all given poor prognoses with the fear that they would never speak nor walk again.
Guess what? - Not only did these 3 individuals survive, they all walked, they all regained their speech and they all resumed normal lives, - driving cars, working etc. after a period of time and rehab. One gentleman took up singing again after not having sung for several years before his stroke! WHY? - patience and abiding in the slow, deliberate processes of nature. Some miracles are just plain slow burners and nature is never embarrassed by tardiness.
There is an expression in Italian that became a musical directive: "Piano, piano, poco a poco." -- Quietly, quietly, little by little. That is nature's tempo.
Keep the faith, keep peaceful and continue to love Jan. She is worth every little natural breath you take as you pray for her.
Jan is on the floor
Yesterday, Steve framed the paradox very well: wonderful news wrapped with serious concerns.
It is true, Jan is in the patient care unit (low level risk), but there are some challenges that Jan's brain still has to face: like gagging and swallowing. All of this will the result of the "re-wiring" her brain has to do, it has to "find" these functions once it knows other more important functions are stable. However, to do this re-wiring, she needs rest. A lot of it!. So, here are some ground rules for visitors (I am not trying to infringe on your rights to visit, only to make sure that Jan is not adversely affected by the deluge of your love.)
-if she is asleep, don't wake her up
-if you have a cold or any other contagious illness, wait until you are well. Her immune system is not 100% back yet.
-flowers (I need to find out if they are allowed)
-small get well cards would be more welcomed, and Jan loves to read your writings inside
-Women preferred to assist nurses in body washing. Please respect her dignity.
-Read to her when she is awake. Bring pictures of you and her.
-don't be loud as there is a neighbor in the room trying to get well.
-Keep in mind that Jan is the patient, and right now her needs are more important than ours.
-After a visit, please blog your impressions, This will be her memory of these days.
-When in doubt, ask. Guessing can be risky.
Thank you again for the many forms your support has taken.
I love you all, and I am sure Jan loves you more.
-Fede
It is true, Jan is in the patient care unit (low level risk), but there are some challenges that Jan's brain still has to face: like gagging and swallowing. All of this will the result of the "re-wiring" her brain has to do, it has to "find" these functions once it knows other more important functions are stable. However, to do this re-wiring, she needs rest. A lot of it!. So, here are some ground rules for visitors (I am not trying to infringe on your rights to visit, only to make sure that Jan is not adversely affected by the deluge of your love.)
-if she is asleep, don't wake her up
-if you have a cold or any other contagious illness, wait until you are well. Her immune system is not 100% back yet.
-flowers (I need to find out if they are allowed)
-small get well cards would be more welcomed, and Jan loves to read your writings inside
-Women preferred to assist nurses in body washing. Please respect her dignity.
-Read to her when she is awake. Bring pictures of you and her.
-don't be loud as there is a neighbor in the room trying to get well.
-Keep in mind that Jan is the patient, and right now her needs are more important than ours.
-After a visit, please blog your impressions, This will be her memory of these days.
-When in doubt, ask. Guessing can be risky.
Thank you again for the many forms your support has taken.
I love you all, and I am sure Jan loves you more.
-Fede
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