Jan is back home!

Dear Jan, you are coming home!

It happened so swiftly, I found you looking out the window, searching the street to find me. You were dressed and ready to go. The nurses had provided a paper bag where you had neatly placed the rest of your belongings. With your blanket rolled carefully under your left arm, you were the living image of a camper ready to go camping. When you heard my voice, you turned with a big smile and quickly stood up by yourself, you pointed to the bag and told me that everything was already packed. When I told you that I would double check the drawers, you rolled your eyes and said: Oh, brother!…we already did that. I went to ask the nurse if we needed any other paperwork before leaving the hospital, but Jan was really ready –all you needed was in your bag, I felt sheepish. We thanked the nurses for the excellent care you received during the two months you were there, and then, we marched towards the elevators, I was carrying the bag in one hand and the radio on the other; you were walking alone with your blanket under your left arm and a big smile on your face.

The rest happened very quickly and unceremoniously; one moment we were talking in front of the elevators, the next we were driving down the parkway. Just like that, two months of our lives were left behind in that hospital. Graduation day, came without any fanfare, well, in fact, Jan was extricated from that place by a set of complex rules that try to send everyone home as soon as possible. You still have to work on the aphasia and apraxia for an unknown length of time. You still have to keep getting physiotherapy to strengthen the atrophied muscles on the right side of your body. You still have to train your brain to pay attention to the right side of your body – because you don't see it, visually it “does not exist” for you. You still have to keep up your determination to get well in spite of the frustration of not being able to communicate all of your thoughts. You have to want and believe that you will get your functions back.

So, today was not a graduation, but more of a rite of passage: you were in the hospital for 111 days. In that time, you went from a deep coma and from walking the thin line between life and death, to walking up and progressively recuperating functions and abilities to the point where you are now. This has been a strange stage in our lives. Jan and I are not the same. But we don’t know yet who we exactly have become. We know that we are more appreciative of life, of small things, we see time in a different way, we trust more, we open our hands with more ease, we are ready to love more readily. This has been a time of stretching and testing our minds, hearts, beliefs and concepts. Jan, you left the hospital with a smile. You were looking forward to going home. You took my hand and rested your head on my shoulder. It felt just like the old days –of last Fall.

The drive home was scorching. The heat wave had broken another record. By the time we arrived home, you were exhausted and hungry. We went to get your medications and to buy some food because you have to eat exactly at 6pm –dinner time.

Jan, you are back home! This afternoon we initiated another stage of our lives. Please remember us in your prayer, we will need all the support we can get.

Fede

Tuesday Notes

When I called you this morning, I was surprised by the clarity of your conversation. You were really joyful and full of expectation, I heard the exuberance of someone who is getting ready for a graduation prom. You graduation from this hospital is tomorrow.

Then, I found you resting when I arrived in the afternoon. I went for my appointment with the social worker while you stayed in your room. You have two new neighbours, two oriental grandmas. I asked you what did you feel when you saw several of your previous roommates leaving and you stayed behind. You said that you had a feeling of dissapoinment of not healing fast enough so you could also leave. However, you realize the challenge that aphasia represents; you now well the frustration of not being able to communicate and the resulting loneliness and depression that can develop within these walls of limited expression. On the other hand, you also recognize the many friends that faithfully have continued coming to visit you. They have been very important in this struggle, and they will continue to be so.

We had dinner together by your bedside. You tasted my food, I tasted yours. It was a warm feeling of familiarity in a strange place. I have come to see this as a normal occurrence. It's been 110 days, almost four months since the last time you and I had dinner together at home. You felt nostalgic for those days and the sense of normalcy that has become a distant memory. While we ate, the other visitors and their relatives in the hospital also shared their meals. It was like being in a park sharing space with other people, all respecting the little privacy each can have and sharing the same feeling of gratitude mixed with the sadness that illness brings into our lives.

You helped me move to the car your plants and the extra clothes you had in your drawers. Everyone who saw you was ready to tell you farewell with a smile, then you corrected them by telling them that your last day is tomorrow. You were carrying your cloth bag and walking by yourself, while I was carrying several plants. You have progressed in your walking so much! I asked you what were you expecting the future, you said you wanted the functions of your R hand back as well as sight in the R eye. You are aware that your determination to "find" these functions in your brain are crucial, as well as you faith in the many words you have received that "all that is your will be restored"

I was very moved when I showed you the guest book where many people wrote messages for you. Tears were welling in your eyes when you read some of the messages. This is the first time you register in your memory these words, you had heard them before, but could not remember or understand them. You felt embraced and loved by the many who wrote some words in this book. For an instant, we felt back in the communities to which we belong.

You said you were ready to go home -and anxious because of the change-, a smaller paradox compared to what you have faced in the past few months. After the hygiene routine you got into bed and with a kiss, I left. There was an overwhelming sense of love and peace that neither of us can explain...

Fede

Back to Rehab

Because of paper work and hospital rules you were stuck at SB. When I arrived for a short visit on Saturday evening, I was surprised to hear that somehow the nurses had decided to get you ready for a day pass. So, I got a wheelchair for you and, in your hospital gown we left the hospital through the back door.

You had a relaxing Sunday. Your speech seems a bit garbled. I wonder if the medication to control seizures is affecting your speech. We will have to discuss this with the doctor. We spent most of the day in the backyard. Louise came with her family. You enjoyed the visit of little Christopher and a lively conversation with Sarah. Later, Steve and Sue came by. We went for some ice cream and then to a nearby park. It was a lovely day, and you enjoyed every bit of it.

We went back to SB Hospital in the evening. You were tired and with some pain in your abdomen. Your stapled-together head seems to be healing fast. It will be a matter of time before your scars heal completely and your hair grows back.

You said you felt fragile, and looked so. Even though you will soon be at home, there is still more healing to happen and I can see you are doing your part. The rest is beyond us.

I feel blessed by the happy time we had.

Fede

The story of Job

I saw you this morning sitting on our bed with a look on your face that screamed: Why I am here and not at the rehab class? The main nurse came to tell us that you will be back at the rehab hospital Monday at 10am, but of course, this wrecks your schedule, and you let the nurse know in no uncertain terms that this was not acceptable! For goodness sake, what has the world come to? How can they not see that you will miss your physiotherapy? Oh, brother....! And that Irish look was all over your face...

Well, not everything was this frustrating. You have had a good breakfast less the bread less than an hour before, but you went to the cafeteria with me anyway. We talked about my week at work, about the plans, about the lessons and about how much your story sound like Job's. Your face lit up with every connection we made between you experience and Job's, and every time you agreed that this was real "walking on water"; that living according to the kingdom's rules does not guarantee an easy path, that the only thing we receive to face the challenge is the certainty that He will be with us regardless of how terrible the storm looks. You are an awesome living example of someone being tossed into the storm, who keeps finding right underneath the wind and the waves an incredible peace in the certainty that you are carved in the palm of His hand.

You were quite interested on talking about coming home probably next week -that is if your healing is good-. We talked about the practicalities of everyday life. You were thrilled that I will spend more time with you. I saw you happy that I am also learning to trust His grace, and took the risk of getting out of the boat, if I really want to walk on water as well. Where will we live and what the living arrangement will be, we don't know, but you and I feel very calm and sure that everything will come into place as it should be.

We saw Dr. Schwartz going up in the elevator, you waved at him and he waved back with a smile. Too bad we didn't catch him to ask a few questions.

We went back to your room. You were happy until you saw again the nurse... Your face changed in a second. When the nurse saw you, she just walked in a different direction. Awh man! You are becoming Jan the terrible!

We wandered how your story will end...

Fede

Sunny---brook

Dear Jan, this second day you spent at SB was nondescript. I went to visit you at lunch time. We took a walk around the ward and everyone greeted you: the physiotherapist, the nurses, the social worker, the support staff. Everyone remembered you. All commented happily on your great progress. You seem to attract love and care so effortlessly.

The head nurse came with the social worker when you were asking WHY you could not go to the rehab hospital at once. No explanations seemed to be sufficient, your mind was set to go back. After a while, you accepted reluctantly the need to stay for the weekend. You will go back to the rehab hospital on Monday.

I got a few calls for information about your status. Here is a brief description of what I saw:

• You are tired and with some pain because of the operation.
• Yesterday you had a seizure and they took immediately a CT scan. The resident later said that everything seemed normal and they put you back on the anti-seizure medication you were taking for a few weeks while at SB.
• Since that incident you have been very stable in your vitals and irritable.
• I noticed that you struggled more with your speech. It could be just the tiredness.

I loved seeing you with your head round again. The patch covers the stitches but one can see the smoothness of the shape. You look so beautiful!

You have an eager neighbour who volunteers help every five minutes. Sometimes, you take the offers, and other times, you just ignore them without any consideration for anybody's feelings. Life at the hospital is very strange; many of the social rules are suspended or plainly ignored for sake of comfort and less pain. There is no such a thing as privacy, which I learned, is a very recent invention. You seem to fit in this rule-breaking environment very comfortably. So you can choose to keep to yourself or to engage with the neighbour whenever you feel like it. You can also argue with the nurses or social workers and tell them exactly what's in your mind without any reservations. The beauty is that they don't take anything personal, so there is this wonderful environment of free expression of needs and thoughts in which the answers are more factual than emotional. How I would love to see this operating outside the hospital. But, I realize that the outside world operates on more illogical and dysfunctional rules than the ones at play in a neurology patient ward. What a paradox!

And so, I left with a bit of envy, back to the "real world", where I have to be careful with what I say and observe protocols which I don't believe. So is life. I am glad you will be coming home soon to enhance my reality.

Fede

Post Surgery Report

Dear Jan, this morning you were up really early: at 5am you were waiting for me to drive you to Sunnybrook. We got there by 6:10am and soon after you were on your way to the OR. Seing your face on the strecher going through the glass doors of the operating area, filled me with happiness. I knew with all certainty that I was supposed to be here at your side, for this, I continue trusting that each day is another oportunity to celebrate life and determination and love by loving with all we have received from the Lord.

You got your bone flaps back! But had a rough day. Stitches, a patch, a big headache, and some other complications filled your afternoon. You were tired and sensitive. I hope that this will soon pass and you will continue you rehab. It looks like you will have to stay at Sunnybrook for an extra day or two. Not sure what the doctor will decide tomorrow.

We will support you in prayers and we send you all of our love.

Fede

Surgery tomorrow

Dearest Jan, for those who can't appreciate the beauty in how your head looks these days they need to look more of Picaso's work or look at Linus' head from Peanuts' comics. I wondered what people think when they look at your head. Is it that is different? Is it that it shows how fragile our own heads can be? Is it that they marvel at whether the shape affects the functioning of your brain?

Maybe the surprise, or the discomfort people feel, has more to do with their own assumptions about how everything should look like, and when something is different from that perception, people make judgments and create distance, isolate themselves and the "others". This is similar to what people feel and think when they meet someone with a different skin color or a different accent, or a different shape. Racism is nothing but a perception about "us" and "them", discrimination is the way we act when we believe these perceptions.

The dent in your head made by the lack of flap bones on the left side of your head may isolate some that don't know what to do with their perception about it. To be honest, I don't even notice it. I focus on your face, on your eyes, on your mouth. Also, I notice that your friends take a glance at it and soon they forget about it; they are more interested in your soul, in your heart, in your thoughts. They connect with who you really are and don't get stick with the appearances. Isn't this wonderful? This is a concrete, practical, transformational result of love. They really love you Jan, and they go for the substance setting aside the form.

But all this will be history tomorrow morning. At 6am we have to be at Sunnybrook. At 7:30 you will have an operation to get your flap bones back in. Your head will look "normal" again. And that's that. Who you are remains unchanged.

Now people will look a the patch in your head while the scar heals. Well, they need to learn about the essential things in people. For those who love you, you will be the same Jan, only a bit more mature... And with a round head.

Keep walking on water dear Jan. Your life is a lesson on faith for many.

-Fede

Tuesday on the road

I couldn't come to see you yesterday; I was out of town. Nonetheless I kept thinking about you all day and wondering about the lessons we are learning in this process. Yes, the first could be that absence makes love grow fonder. Our lives have changed so much since February 11, yet our bond only grows stronger.

I believe with you that this is part of the plan, and that, although, I don't know the concrete destinations where this plan is taking us, I am certain of the Lord's companionship in the process. The second lesson could be something I see often in you: a certainty of the things you don't see, a trust in what you hope for. You are a true water-walker; one that is not bound by fear to stay on the boat when the invitation is to join the Lord on the rough waters. As a matter of fact, where you have been in the past three months is the equivalent to rough waters, and what I see, is Jan walking on water in defiance of all prognosis, statistics and normal expectations. I have learned so much from your daily walks, and I hope to keep away my fears to join you in this wonderful exercise of faith.

If I had to identify one aspect of your core, I would say it is language. You love words, thoughts, discussions, music, and any other form of expression of your mind and soul. The SAH-L, like the tip of a magician’s wand, touched the centre of language in your brain, and in a few seconds your language skills were gone. No words, no expression of ideas, no music, no foreign languages; just silence, many hours of silence, days of confinement in your mind when you were unconscious. Then, over the past 10 weeks, I see how you are pulling together the pieces of language: broken speech conveying meaning with the assistance of your left hand and your facial expressions; humming to follow songs and occasionally inventing words to match the music; using that left to write and sometimes draw. The third lesson could be something related to the tremendous power of the will. You have a strong will. You choose life over oblivion or death everyday. You choose communication over silence, you find many words, every time more and more to express your ideas, you love singing and music. Your determination to believe that this was meant to happen and that everything is under His control is the single most important bridge to bring you back to us. You just don’t give up. Maybe that concept is not even in your dictionary. I must learn this for myself: how to take this process one step at a time trusting as well that He is in control in the middle of the storm.

Fede

Long weekend

Dear Jan, long weekends, or for that matter, any day can be very long when the main feature is pain. You are becoming an expert on this. You experienced unusual symtoms as side effects of a new painkiller the hospital gave you, an opiate analgesic type used for people in post-operative circumstances. You spent most of Sunday dizzy, with nausea, lightheaded and very irritable. You knew right away what caused this, and so, we navigated another day.

On Saturday, you were so happy and active, helping with the packing, directing traffic, selecting files for recycling and files to keep. It was great to see you so involved. In the middle of all this transition you have remained so stable in your conviction that the Lord is in charge. Throughout the day, you enjoyed the help of dear friends: Wolf and Monica, Jeannie, Julia and Nickersinsky.

We are still looking for a place in the West to be closer to our communities. There are older homes but the stairs are still an issue for you; to find a bungalow is not an easy task. Hopefully we can locate something very close to RUC.

The call seems to be to continue walking by faith, not by sight.

I hope tomorrow is a better day for you, Jan.

-Fede

Another milestone

You continue to challenge yourself sometimes with a smile on your face, sometimes with a cry on your lips. This morning the anesthesiologist told you that therapy would do only so much for you, the biggest improvement would come from your own determination to get better. And this is exactly what you are doing: pushing yourself beyond the limits that aphasia and right neglect impose on you. Keep up the effort!, there will be a big reward at the end of this process.

Since last Monday you have more mobility on your shoulder because of cortizone. However, this also brought you pain and discomfort for the rest of the week. This morning, while waiting for the preparation bloodwork, you began feeling a lot of pain. When we left the hospital you were in tears and unable to walk because of the pain. A volunteer lady wheeled you to the car. Some days are good, there is little pain; some other days, not too good, like today, when you had more than your share of pain.

You have gained a great deal of mobility on your right leg; in fact, you walk very confident when holding my arm. Only when you are alone you use the walker. Today you mentioned the possibility of trying a cane to keep your balance.

Your right hand has remained weak and not very coordinated. Tonight, while having supper at home, you took a fork, placed it on your right hand, scooped some food from your plate, moved slowly your hand towards your mount, and.... took a mouthful of my version of Dal and Cholle (Indian cuisine). Your face illuminated with a great smile. You have reached another milestone on your rehabilitation! You were using your right hand to feed yourself!. With slow and tentative movements you continued for a while, until you decided to eat faster and changed hands.

After dinner, you went straight to the sink and using both hands, you washed most of the dishes!!! What a treat to be witnessing this events. One day we will laugh at how these movements most take for granted, meant so much for us both.

I felt thankful. This was the best confirmation of grace and love from above at the end of a rough week. When all seems to be at the edge of an abyss, you showed me many reasons why I should trust and wait for the Kairos.


-Fede

Rest and grace

Dearest Jan, I found intriguing your interpretation on grace, as a fact in the past, something already given, just waiting for me to acknowledge and accept it. then, as a natural consequence, extend the same grace to others. What a simple, yet complex matrix on which to build a different reality.

I know you are a different woman today from the woman that three months ago landed in an operating table struggling to stay alive. Something has changed dramatically in your reality. This morning I asked you if you prayed, you answered: No. Then, I probed, how can you stay in touch with The Lord? You said, I don't need to, because He is all around me all the time. Whata reality changer thsi statement can be!

Today you were busy with occupational, speech and other activities. At the end of day, however, you found the right words to give DN the sermon of the day. Your speech was very clear and articulate. Another day closer to the end of May and your return home. I anxiously wait for that day.


-Fede

Purple Flowers and care givers

You were asleep when I called this morning. You were asleep when I called at lunch time. You were asleep when I got to the hospital just before. You were tired and with low energy, but very clear in your speech. Day of recovering from the pain from the last two days. When you are tired, you sound softer, more fragile, you speak as if you wanted to keep the rain suspended, silent, on the liquid side of your window.

Today was raining most of the day; a perfect day to just get under the blankets and see the rain fall. Let others get wet, look at the clouds move fast, hear the thunder in the distance and remember your childhood days, walking under the rain back home.

I remember one of the girls from RUC commenting that you speak with this "Parisian" accent; low, velvety voice, a distinct pronunciation with a peculiar swaying of each word, until you come to that particular word that you can't find. How romantic and accurate this description of a passionate person, your passion is revealed even in your "accent".

You will have some bloodwork on Friday morning in preparation for the surgery next week. I was delighted to hear that you were really concerned about missing speech therapy. I am sure Sol will feel the same. Tonight there was a conference on Aphasia t the auditorium. You wanted to go to your room but sent me to the conference. I was amazed at what I heard: relatives speaking of a few words after 5 years of therapy, six months without any words, really broken language. I felt grateful for what I see in you. In only 12 weeks you are already debating any topic, walking around and making friends with just about anyone who crosses your way.

You got beautiful purple flowers from Vivian's garden, so fitting to your window, providing a perfect contrast to the grey background of this rainy day. Kate (?) came also to visit. I could not get the names, but from your comments I am certgain you had a wonderful time with them. Rain, flowers, friends, nice memories, the certainty of God's love, what else can one expect from life?

-Fede

Bone Flap(s)

Doña Janita Walton de Carrillo. I know you love your married name, as if it every time you said it, it refreshed your memories of the incredible adventure we promised each other not long ago. It feels good to remember vows. It feels better to glue them to your own identity by adding to your name who you want to be today.

This morning you said over the phone: when are you going to start living like if you have seen the light? I was on the way to the office after dropping Omar at the airport. Sitting in the middle of gridlock traffic I pondered your words. I was happy to hear that you continue to spring so much fresh water on my days from the deep pools of your forced meditation during these past 92 days. I am certain that you have seen the light from a different perspective, from close enough to be able to smell its essence, from a place where you could just reach out and touch the other side. Near death for you was to be near the essence of life. You saw, you heard, and you remember. I benefit from this richness in your soul.

Later in the day I picked you up at the hospital. You were waiting for me at the main door, pacing up and down. We drove to the surgeon's office and met your parents, Louise and Carol at the cafeteria. You mentioned that it felt funny to be back in that building where three months earlier you were fighting for your life. We went to the appointment with the surgeon and he asked you if you wanted your flap bones back. You hesitated, Louise expressed in no uncertain terms that that you needed your bones back. Eventually you said yes. The doctor asked you to sign a consent form an announced that you will get them back next week on Thursday. Now you will have the original shape of your head back! Everyone was happy. You too. It was a strange meeting, but we all fet a sense of completion, of coming to a milestone in this rare journey of the past three months. True, there is still aphasia to think about, but for some reason it didn't seem that important then. Dr. Schwartz was very encouraging in his prognosis, both of your shoulder-right side and of the aphasia.

We went back to the hospital, and on the way the pain just got the best of you. It hurt me just to look at your suffering from so much pain, I wished I could take it away. Back at the rehab hospital they gave you some painkillers and you went to sleep. We know that these are effects of the shoulder injection from two days ago. I pray that this will pass soon.

I am glad for you Jan, I am beginning to see what you mean when you say that all of this was meant to happen...

-Fede

Thawing the frozen shoulder

This morning you were out to change the world before lunch. Big task, no lesser determination. I could picture clearly that look with the lowered face and that little crinkle in the middle of your forhead. You were ready to take on anything and anybody who decided to get on your way -at least that's how you sounded- Coming to think about it, I don't think I understood most of what you said, except the final: how dare they! Go get them all Jan! I guess you have joined the club of knee breakers.

After lunch, you were happier. The doctor had given you a cocktail of corticosteroids and something for the swelling (it was injected, of course). The injection was painful for a short while and then you felt better. By the time I saw you at the end of the day, you were already moving your arm half way up and felt your shoulder more relaxed. The doctor said that the pain on your left side is a neurologic reaction that has nothing to do with your hand or leg or the skin in general on the right side of your body; he said this is more the way the brain is reacting during the healing: it makes your skin feel more sensitive and also makes you feel cold all the time. He said, this may pass with time. He alos said that if the injection has positive effects, you could have it two or three times a year. We'll see.

You were rested and happy. I found you surrounded by your roomates: the aboriginal lady who just loves you; Rose(?) the anglo lady who follows only your orders more than those from the nurses, and the italian lady, who loves your singing and happy heart. What am organizer you are Jan. Already having your audience in your own room, all listening carefully every word you were saying and filling in the gaps when your speech broke. Aphasia can't stop who you are, you just overflow the limitations and the essence of your heart comes out through the seams.

Tomorrow you will go to an important appointment with the surgeon...

-Fede

4 questions

Saturday was a hectic day for you Jan. Your energy was really drained at the end of the day. Nonetheless, you seemed happy. Friends came to help start packing. I'm sure there was a question in people's minds when we asked for help earlier in the week. Jan moving? Not again! You seem to have developed a reputation that even the nomadic Bedouins have trouble matching.

You were so glad to clear so much stuff from the basement. Linda Ruth and Brenda had a ball with you down there, classifying, bagging, boxing and laughing all along. I noticed the surprise in them when they saw all your artisitic abilities coming out of the boxes. You are such a precious and skilled person. No wonder why so many people loves you.

Then, when the dust settled, we saw a movie. Intriguing and charming, but above all mind expanding. We ended with more questions than answers; was he ill? who are really ill? is delusion a gift or weakness? who was learning from whom? Then I told you:
"Hi, my name is Don Juan de Marco. All my life I was looking for my Dona Ines, until I found you"
You instantly replied,
"You were not looking for Dona Ines, you were looking for Dona Janice...it's just that you didn't know how to spell my name..."

We laughed very hard when I kissed your hand and bent my knee.

We talked about the answer to the 4 most essential questions Don Juan mentioned: What is the essence of life? What is the essence of the spirit? What is worth dying for? What is worth living for? Don Juan said that the answer to these questions was the same: love.

I marvel at the speed and extent of the recovery I see in your body and in your brain. I wonder how do you get your strength to go on: simple answer: you love the gift of life and its giver so much that what is coming out through the seams of you current life is love.

Jan you are very much worth it... I am Don...

-Fede

Many languages

Dear Jan,
Everybody knows that you speak several languages: the languages of speech, syntaxis and grammar, the language of music, the language of emotion, the language of the soul, the language of creativity and art, the language of character, and many others. I know, you speak French, Portuguese and Spanish. All of these languages have one thing in common: expression of being. Jan, you know well how to fully be in the moment, letting go of the time past, and looking foward to being more in the time to come. Yes, I see you have that rare ability to live fully the moment when most are trapped in the guilt of the past or the fear of the future. You don't believe in God, you know, and it is this knowledge of deep truth that frees you to live now what you have been told.

I really enjoyed our conversation tonight. I shared with you my lessons of the week, the challenge to jump and to know that the net will appear; the unbelievable lightness of heart I experience when I just trust Him; the simple, yet profound lesson that even in hurricaines there is calmness below the surface, that when my feelings are reeling all I need to do is look at the quiet places below them. Hard lessons, though to fully understand them at first. I struggle to open my ears and my eyes to the essential truth of the Lord of life.

I know you know this well. You knew it before you went to the hospital, but your stay there has deepened this knowledge. Clearly, the many hours of silence have sharpened your mind. Tonigh, you listened carefully and joined me in my joy. You laughed so hard... just because I got what I got when I got it (this is one of your favorite phrases).

I can see you are mastering many languages that Aphasia cannot touch, like the language of the heart. You said many things without words. Someone told me that you carry your feelings in your sleeve. Well, that's wonderful! because your communication goes beyond mere words...

-Fede

Corrected email address

For any of you who tried the email address Fede posted below and had it bounce: there was a typo in the address. I have corrected it in the posting, and show it again here: jan_get_well@yahoo.ca

-Steve

What matters most for Jan

What matters most in your life, Jan? Some time ago, whenever I was asked this question, I used to go for the comfortable answer that it depended on the circumstances of my life at the moment. But you don't think so, and I agree. What matters most in life, you say is a matter of choice not of circumstances. This choice -you emphasized- comes from within, it reveals the true desires and values of your heart. Choices based on circumstances reveal a fickle soul, and you have decided that you will not be so. It is true, you didn't used these words I am using in this blog, and it took more than 30 minutes to translate, but your ideas came crystal clear for me.

Living in hospitals for 87 days in a row has certainly changed you Jan. Your physical substance seems to have diminished, you lost weight, your right side gives you grief; nevertheless, your mind and your heart seem to have expanded, they feel more coherent with your views and more complete, in spite of the apparent contradiction if you consider your physical challenges; this is a true paradox. But you have always been paradoxical.

What struck me tonight was the certainty of your faith, the depth of your convictions, the strong belief that God knows what s/he is doing, therefore, there is no need to fear or to worry. I know most of us say the same things when we are in a good frame of mind, but as soon as trouble comes, we quickly recant, doubt, blame, fill with anger and ask incessantly: why? why? why? I don't know any other person in a tight place like the one you find yourself in right now: tested to the limit mentally and physically, using the portion left of your brain to not only find the strength to go on healing and recovering what you can in spite of all the diagnosis to the contrary, forced to give up your job when all of your life you have worked, forced to give up your family and home life for an impersonal hospital room, forced to slow down, to speak less, to believe more. What is your core made out of that not even a bleed in your brain and all of the negative resulting circumstances can tempt you to give up, to become bitterm, to be cynical? Instead, in your slow voice, and fractured words, you clearly talk about your choices: you choose life, you choose thankfulness, you choose to believe that God is taking care of you.

I admire your soul and your faith. This was the spark that made my love catch fire for you. A real person, with no shadow of pretense. I know what matters most to you Jan and I baske in the strength of your faith.

Tonight you were frustrated for not finding the words for your shopping list for the occupational therapy class tomorrow. You told me that you needed to make a shopping list. You already had: meat, spices, oil, frying pan, rice and could not find the word broccoli! How frustrating to be able to see the picture in your mind and not be able to describe it. But this did not stop you from finding the right word. This is a new addition in your personality: patience.

What will the future bring? You don't know but you know who will be by your side. Thank you Jan for such a precious lesson.

-Fede

Life book

A blog is a blog is a blog. In cyberspace one is supposed to write anonymously. It is an open virtual world, where the rules of the real world supposedly do not apply; or do they? Is it possible to leave on the side of the keyboard your own principles and just blog freely? It is more likely that our principles and values go wherever we go, that this "world of norms and values" we so earneastly fight, is really the only version of reality we have learnt, internalized and built over a lifetime. Any resistance to it is futile and probably self-deception. A blog will not help us unlearn who we are and how we think, let alone how we behave.

Jan reminded me of how much what I write in this blog is my take. I have been providing feedback to the speech therapist and jan wrote on her notebook her own reply to my observations! That's right, she wrote her reply! The writing needs some work for clarity but she has begun to "challenge" other people'sobservations. Yes! Jan continues to come back.

We took a long walk on the park next to the hospital. We walked about 1 Km. Jan was tired after that, but happy and relaxed. Jan is coming back!

Thank you for your faithful support in prayers and letters and emails and your unconditional love for us. It is blooming in due time.

-Fede

Sunday

Our front yard is a paradise. It has two trees in full bloom, Jan loves flowers, so this view was a heartwarming welcome home this weekend. These flowers reminded Jan of the power of life: how during the winter the trees look death, but given the right temperature, they become alive with such energy and glee.

Sunday was a slow day, Jan helped making breakfast (the toast and tea) and setting the table. She is walking basically without the walker. She can keep her balance on short distances and also can climb short flights of stairs. She still feels that she could lose her balance if she is not holding onto something.

Jan is on the way to recovery, but this will take a while. This is the time the brain requires to heal. She is far from where she was 6 weeks ago.

All this sound excellent, and it is! The challenge will be when Jan leaves the hospital at the end of the month, she will need rides to her classes and rides back. She will need some company during the day to do some basic chores. We will be very grateful for all the help we can get. I know that all of you are really busy -after all you live in the GTA- nevertheless, let us know of when or how you can help. Please send your name and your coordinates to jan_get_well@yahoo.ca

Blessings,

-Fede

Daily life

Jan used te be a busy woman; her weekends were busy with the workshop and lecture circuits. She atttended two services and managed to keep in touch with people from at least five communities she had belonged to in the past. She loved challenges, the bigger the better. Jan is not as busy now. She was forced to slow down. What she calls life now is a series of everyday events that most consider irrelevant. It is in these small events where she find her big challenges today.

This morning she changed the cat litter, but no sooner she had started the cleanup, she was already asking for water, paper towels, clean litter replacement, etc. She forgot to plan and collect all the utensils she needed to do the job. This planning skill is the focus of her occopational therapy. She needs to become independent to the point where the hospital will consider that she is ready to go back home.

Many everyday details become mountains to Jan. She, however, continues to push herself and go forward.

-Fede

Relocation

As you saw in the previous blog, Jan will be out and about in less than four weeks.

MOVE- We are planning a move to the West, closer to the communities of support Jan and I have. We have requested help for packing and some muscle for the actual move. To avoid chaos -at least in this aspect- and having too many people showing up. Please let us know your plans and give us two options. We will make a list and let everyone know when your help would be most effective.

ONGOING SUPPORT -People who want to be on 'the list' for ongoing support should email their,

name,
phone number(s),
email(s) and
whether they have a car,
what days/times typically they are available
to jan_get_well@yahoo.ca [Corrected by Steve. jan_get_well @ yahoo.ca]

Many thanks for the amazing love you have shown for Jan and I during the last 85 days. We have made it this far because of your generous hearts.

-Fede

Jan's Plans

Many people have asked me about the long term plans for Jan. But, before we get to this let me tell you what I heard from Jan today: She said that no one had visited her today! I told her that I was totally crushed with such news. I could not imagine that all her loving friends had deserted her [...I raised my hands and my voice...], this was totally unconstitutional and against her right to a good visit from her friends. She laughed and said: "you are so funny". So much for my career as advocate of the lonely.

I know that we have asked for some rest time for Jan, and she kind'a confirmed this. She enjoys visits, but recognizes her limitations in communication and swings between wanting on the one hand more visits from her friends to sooth the loneliness of hospital living, and on the other, she enjoys the quiet times and the freedom to sleep whenever her body tell her so. What action shall you then follow? I dunno' Follow your gut feelings. She is at her best between 4 and 6pm. If she is having dinner, she enjoys when people go to the cafeteria to buy their own dinners, and then bring it to her room where you can share your dinner with her -note: she most probably won't share hers with you-

Now let get back to the Plans:

-Jan is scheduled to leave the hospital on May 31.

-She will be meeting with the surgeon in 10 days to discuss a date for the placing back the bone flaps (could be at the end of the month).

-She will continue with speech and language therapy after she leaves Bridgepoint, in a comunity clinic or in the current place.

-She will need support after June 1, in the following:
*getting a ride to therapy when Fede is working
*getting a ride to visit or go shopping when Fede is too tired to do this
*some logistical support at home when she is alone (we are exploring the possibility of home support, but it may be at a cost...)
*getting some good singers to come and practice the music she loves so much.
* just sharing tea and cookies with good friends.

Keep posted for upcoming changes in Jan's life. She will not go back to teach, at least in the next few months. She will need emotional and spiritual support to keep focused on her recovery.

Yesterday, when the speech therapist asked her what animal she identified with, Jan said a blue jay. This was a bit of a surprise to me because she always told me that she is an eagle. Does this change indicate a change on the way she sees herself? Is she shy of soaring high? Is she feeling insecure because one of her wings is not fully working? Maybe you need to remind her that she is still and eagle... and believe with her that she will soar again.

-Fede

Family meeting

There was a family meeting at 3pm with the speecha and language pathologist. Sol wanted to update the family about Jan's progress and activities. She is a good teacher: came prepared with all materials, clear explanations and an excelent explanatory method of complex matters. On top of that, she brought fruit, cookies and cheese to the meeting for the participants! I would give her a 100%. Too bad I am not her boss, so I will just wish she gets a raise.

Jan was very attentive throughout the whole session which lasted a bit over 2 hours. She participated like anyone else clarifying and adding to the explanations given. Great effort on her part and very satisfying for most members of the family to hear the great progress she has made in the last few weeks.

Jan is diagnosed with moderate to severe Expressive Aphasia; Moderate Apraxia, and mild Receptive Aphasia, which means that she has a long way to work on (1) rebuilding the connections betwen her ideas and the dictionaries in her head, (2) between knowing the words she wants to use and being able to make the mouth actually pronounce them and (3) decoding what people tell her, in particular if the surroundings are too noisy or there is more than one conversation at a time.

Whenever you are visiting, please make the point at the beginning of asking Jan for her communication binder where you can read a bit more on the strategies to communicate with Jan and where you can write those darn words that just refuse to show up in Jan's speech. If you want to have a satisfactory visit, you will have to learn the rules of engagement, or else you may end up having a monologue.

Admirable woman. Jan continues her struggle to get well. Lots of work. Great determination is expected. Strong faith. An open mind, and above all, a great capacity to love the gifts of life and rejoice in what she already has and is.

-Fede

The heart of the matter

Jan was writing the fifth page of words, I suppose this was her homework. It was past 8pm, and the rest of the hospital was already quiet. She seemed very calm and centered. Her words were carefully selected. On occasion she would miss the odd one and she would gesture with her face and say, Oh, man! She said she was glad to see me. She didn't expect to see me today again. It was almost two days, she said, since the last time we saw each other. She asked me to show her my watch, and said the time correctly.

We went for a walk, she walks with certainty and balance, her motions are slow, but fluid. She moves like a feather caught in a light breeze.

We talked a bit about the weekend. She was very clear about how it went the wrong way, and how this does not need to happen. We laughed and hugged. She was beaming again.

-fede

Theocratic life

Journey of a Creative Playful Explorer: "received an email from my church mailing list. It was a prayer request for another family that just recently and suddenly lost a member to an aneurysm. [....]

Thanks for your comment about the blog yesterday. It was just a postcard of my feelings.

...
I found your questions about life and death very intriguing. I do not see both as the result of some democratic process, but rather both appear to me as the instances in which we are the most powerless and on which we have the least say. Life and death are both gifts. Birth: The gift of entering this reality to experience the good and the bad. Death, the gift of entering another reality loaded with the experiences we collected from life.

One dies of aneurysm, another survives. One had completed the journey the other still has more time to go. I don't need to believe that God decides when someone is born or someone dies. It is just part of the package, everyone has to touch both ends of the wrapping. How we are born or die must be last in God's list, God must be more interested in how we lived the time we were given, how we filled our days, how we learned to relate to ourselves, to others, to God.

We choose to feel sad in front of death. But by the same token I could choose to feel sad in front of life when it has been stripped of the most important tools the made Jan who she is. Suddenly a brave, intelligent and articulate woman is sent back to grade 1 and has to relearn to rad, write and speak! I rather choose to feel grateful for both, because both are only as relevant as the parenthesis characters envolving a central idea.

But then again, maybe I am totally wrong.

Fede

If my heart was a river

If my heart was a river, it would bear no scars, it would embrace the rocks, turn, roll and explode in a joyful laughter disipated in white foam.

If my heart was a river, it would bear no scars when the curious child sent that flat-rounded stone skipping over the surface, leaving ever growing rings, soon to be hidden in the memory of its flow.

If my heart was a river, it would bear no scars, when my love dipped her feet in its waters to cool her day, or when she raised her voice to stop its flow, or when she mixed her tears with my waves.

But my heart is not a river, it bears scars as if it was wearing the fingerprints of life.

---------
Today, I can't report how Jan is doing because I didn't get to see her. Sorry if you feel dissapointed, I feel cheated too.

FC

UNDERSTANDING APHASIA

Re-run of notes on Aphasia (I have applied the text to Jan)

-Aphasia is a language disorder in which Jan's capacity to read, write, speak or understand the speech of others is impaired.

-Aphasia occurred when the language centre of Jan's brain was damaged as a result of her acquired brain injury (her surgery).

-Jan still have her intelligence and creativity intact. She knows what she wants to say but has trouble getting the words out and making sense of the words she hears or sees.

-Not two individuals with Aphasia are alike and therefore, recovery patterns are unique and unpredictable.

-Aphasia can occur on its own, but in Jan’s case, it occurred also with mild Apraxia of speech (her speaking process is jumbled), and possibly some Dysarthria (weakness of the speech muscles) and difficulty with memory and word finding.

-Communication problems as a result of Aphasia can affect Jan’s well-being and self-confidence. Sometimes, she may feel depressed, upset, frustrated, bored, confused, and angry. When she is rested she seems to be in good spirit, but becomes tired quickly.

-Jan’s Aphasia affects the whole family.

There are more that 40 thousand people in Ontario affected by Aphasia."