Monday, July 31, 2006

A weekend at your sister's

It's been 169 days since our "night of sorrow" started. This rich length of time is full of irony divine and human. Here are some examples:

-Some days life has been so dark and gloomy that I have seriously wondered what good can come out of this. Ironically, it's been the darkness that has allowed us to "see" more sharply the beauty of everything that comes from the light. I call this the "contrast effect". We both have experienced the presence of The Lord in a totally new way. That could not have happened if we had gone on with our comfortable and safe life. Our plans proved to be as strong as toilet paper. They needed to be shattered, shredded and toosed away in the garbage can. Our inflated self-confidence needed to be broken, our image needed a total face-lift. We were working on it, and maybe this was the only way we would listen. Jan's aneurysm demolished us, cracked many of our myths and false expectations. Our marriage was broken beyond recognition, however, we survived Paraphrasing Linda Ruth: "it is through the cracks of our broken vases that His light seeps through...". It is from a a close encounter with death that we have experienced the Lord of life.

-When I tell Jan's story and her progress, people often say: "That's an amazing story full of miracle and hope". At a first glance, I get the feeling that health and joy are the norms in life and Jan and I, are on the dark side of life with a few unfortunate fellow sojourners. But when I dig a bit further, I find that more people are in pain and facing incredible adverse circumstances, than I could have imagined. Then, I realize the irony, that we, the sufferers, the ones needing to be loved and comforted, instead, are placed in position of helping and conforting others by sharing our struggle to rebuild our shattered lives; by speaking the truth about our doubts, dissapointment, and pain. Moreover, that we are not only surviving the process, but that we have find ourselves enriched with the experience.

-From this process I can say that the greater the darkness, the brighter the light. In a very clear way I can see that when we are weak is when we are strong! ...Strange statements, isn't it? Full of irony and truth. But this is the modus operandi of the Kingdom.

On a practical note, Jan is enjoying a wonderful vacation at her sister's in a small town 80 minutes north of Toronto. On the phone, her voice sounded an octave lower, very close to what it was before. She also told me that her right hand was "coming along very fast"... Hurray for Jan! For me it is the first weekend that I didn't have to do anything. It was wonderful. Both are refreshed.

-Fede

Tuesday, July 25, 2006

Progress Report

Dear Jan,

Here are some more thoughts about your progress.

Most people who care for you wants to know how you area doing (meaning: how are you moving in an imaginary scale from worse to better or vice versa). Nothing is wrong with this. We are inquisitive by nature. That's the way we were wired. We want to know how you are doing in clear, unequivocal terms. Somehow, all of us have become empiricists and are stuck with measuring all aspects of life.

So, here are some indicators of your state:

1. Four months ago, when you were still at Sunnybrook, you couldn't walk more than 50 meters with help. Your speech was limited to a few words and there was no movement in your right hand. You could not read or write more than a couple of words and were taking a cocktail of at least 5 medications.

2. Almost two months ago, when you left the rehab hospital, you were able to walk 500 meters without help, your speech included a few hundred words, your righ side, in particular your right hand and shoulder were moving considerably more, you were able to read short paragraphs and had trained your left hand to write two or three sentences, your medications were down to 2, one of which was multivitamins.

3. Last week we went to High Park for a walk of a bit more than 1 Km. down and uphill without help, your speech is ample and you get stuck with words only when excited. LAst week you participated at church by sharing your views on a passage for a couple of minutes. During visits with your friends, your speech flows nicely. Your right hand is moving a lot, three days ago I saw you putting it on the piano and playing a few chords. Yesterday, you were reading a novel and told me that you had been able to read 8 pages in 1 hour. You write and sign your own cheques and wrote a letter to your sister. The doctors agreed in stopping all medication in the next couple of weeks.

Those who see you one in a while can see the changes more dramatically than those who see you often. But there is no question that you are making progress. The tempting question is how far will these changes go? We have heard from the medical staff that you will go as far as your determination goes. I add to this that you can go further with the help from your community of support. However, I acknowledge that the final decision is in God's hands. On this topic Linda Ruth provided invaluable insight in the comments to the last blog; it is just a matter of faith and trust. So, no matter how much or how little your progress will continue, we all have to do what you have done so valiantly, to accept your situation now with grace and faith and really trust in The Lord.


-Fede

Friday, July 21, 2006

Staying Power

The days Jan spent in critical care were perhaps the easiest for her, because she was unconscious. The doggedness in that stage was from family and friends who decided in their hearts that they would not leave Jan alone. They prayed, and Jan lived.

The days that followed in intensive care and then in rehabilitation became a joint race in which Jan started to add her determination to that of friends and family. She felt the love, she knew she had to fight to get well to have another chance to reciprocate the love received. Everyone's efforts produced wonders and Jan started to show the stuff of which she is made. Soft heart, bright mind, tough will, open character. That was Jan with no frills, and this time with few words.

The day when Jan left the rehab hospital was when the marathon to get her lessened functions back really started. This is where everyone's real staying power is required. Just to illustrate: in the two weeks after Jan's aneurysm she received no less than a hundred and fifty emails and calls of support. Last week, Jan received a half a dozen calls and 2 visits. But she does not complain. She doesn't even mention this at all, however, there is a lingering sadness that is setting deep in her heart. Prolongued silence and isolation has its effects.

She misses the phone conversations with her friends. She misses the visits received and given to many friends. She misses the action. She doesn't know what to do with herself. She was an action person with strong opinions. Now, she still ahs her opinions, but not enough words to express them. She is painfully aware that she is "very ill" (that is how she describes herself) and that ironically, her strength: communication, has been taken from her for now. She knows deeply that there is a purpose but her patience dissipates on the everyday life and faith is often obscured by a sense of loss. Without words her face screams: I need my friends! I need some action! I need to feel valuable and lovable as before! In moments like this, her staying power looks very weak, at a breaking point. Her wide world has become very narrow and she is struggling.

Would you pray for Jan's staying power?
  • Jan will continue therapy until mid September, after that, we will have to find other alternatives to help her progress. Pray for guidance
  • Jan does not have a long term disability plan, and the therapies are expensive (in the thousands). Pray for financial resources.
  • Jan needs to keep her spirit up to make progress. Pray for peace and strength.
  • Jan needs to incorporate more people into her life. Pray for the renewal of friensdhips and that she will be open to make new friends.
  • Jan needs to overcome the moderate to severe expressive aphasia and the mild apraxia she suffers. Pray for the restoration of her language mechanisms.
  • Jan experiences continuous discomfort and pain in her right side. Pray for relief and faith.
  • Jan will stop taking medication to prevent seizures, it produces many nasty side effects. If Jan does not have a seizure, she will be free from teh medication, but if she has even one, she will have to take it for life. Pray that Jan is kept from any seizures.

You prayed before and she lived. Keep praying so she can complete her marathon of restoration.

-Fede

Monday, July 17, 2006

Pushing Away

Dear Jan

It's almost a week since the last time I wrote in your blog. We have been so absorbed with the unpacking, that the days just fly. Time is going so fast! It is five months ago since you were rushed to one hospital and then to another. 158 days since your immediate family, some close friends, and I, were anxiously waiting past midnight in the CCU for news about your operation. The memories are becoming like one of those sepia-coloured old movies, however, the details are as fresh as ever. I still remember the strange feelings I had. Those feelings felt, like wearing an oversized heavy coat in a warm day. I still remember the nervous walking up and down the corridor and the quiet company of Linda and Joy. I still remember their comforting words and prayers in a tough time. In our wedding vows I had promised to love you even in tight circumstances, but I never imagined that this was going to come so soon. That night, I was confused, tossed around in a tidal wave of emotions, desperately trying to keep my balance, life felt totally out of control. Little made sense. There was a big battle being fought in the OR by the medical staff to keep you alive. Inside of me I was fighting another battle with my own emotions and the myriads of questions that cascaded into my head. At five months, all that commotion seems foreign to me, as if this terrible illness would have happened to someone else. This is probably the way our minds and hearts heal, by taking distance, keeping things in perspective, and giving it time. Now I can see that old sepia-coloured movie and calmly reflect on what all that meant.

But, this is only how my feelings have come to some calm. There are no more Why? questions demanding answers from God and friends. Instead, there is a quiet understanding of the measure and value of life; of the temporal nature of pain; and, most important, of the eternal consequences this type of event has beyond our bodies, in our characters.

Nevertheless, the last few days are sharp reminders that all this is only my point of view on having an aneurysm and dealing with its consequences. While my feelings have settled, you are still fighting minute by minute the devastating consequences of this disease. Last night at church you reminded all of this fact.

You are brave and have a strong will to get well, but the day to day limitations you face as a consequence of the disease are overwhelming. Yes, time and time again, I see how easily you become overwhelmed. It is the limitation in expressing your ideas, it is the limitation in understanding all what is said to you, it is the limited movement on your right side, and probably above all, the constant pain and over-sensitivity of your right side. Often you say: “it’s just not there” It is hard to imagine how it feels not to be able to feel or to see one half of my body! To the physicality of the aphasia, I add the many hours you spend in silence. You need your friends, their calls, their visits, and yet, when they call or visit, you cut short the interactions. It must be painful to need company, but at the same time, because of the problems in communication or the generalized throbing in your body, to push them away.

Is it that you are struggling with depression? Is it that you are working out your own feelings about what has happened to you? Is it that you are struggling with reconstructing a new self-image that would include your current limitations? I don’t know. All I can do is to offer you my love and support, even though often I am also pushed away.

I hope our friends loyally continue to pray for you.

-Fede

Tuesday, July 11, 2006

A visit to the Neuro-Surgeon

DearJan,

This morning seemed to be like any other, the day opened with all the challenges every urbanite has to face. We had an appointment with the neurosurgeon that saved your life. It was the second follow up visit. Dr. M.S. is an unassuming fellow, if you bumped into him in a supermarket, you would think he is the guy working in the produce department. You were a bit anxious to discuss with him your questions. When we went into his office you were more relaxed and answered his questions with ease. I think he answered all your questions to the best of his ability, although not to your complete satisfaction.

The one outcome that made you experience more relief was to hear that you are going to try to get out of the medication to prevent seizures. The previous brand gave you grief with many side effects. The second one, although more benign, also affected your speech and made you sleepy. Now, you may be able to stop it for good. But, if you have just one seizure, you will have to take the medication for life! You like challenges, so when Dr. MS proposed this plan, you were quick to accept it.

Now we know first hand of the power of prayer. Nothing is really impossible with prayer. They prayed. You are alive. We will ask anyone who knows you, to pray that the seizures stop from happening again, so you can be free from this medication for life.

You continue your amazing progress. It is very revealing seeing and listening to you at this stage in which all the subtleties of polite and diplomatic language are still missing. You will ask your questions without any trimmings. At one point, when the Dr. was writing, you told him: "I am talking to you", he stopped what he was doing and looked at you attentively. Direct, truthful, fearless, I see the same Jan with the same personality, perhaps with some parts exaggerated because of the healing process.

On the way back, we stopped at the school where you used to teach to drop some equipment you had borrowed. We met with one of your colleagues and you were totally yourself, like a fish in water.

It is five months since you were taken to the hospital. It is Three months since you were transferred to the Rehab hospital, it is a bit over one month since you came back home. Time flies, and your brain continues to rebuild new neuropaths, to reprogram functions and to relearn. A few minutes ago you were explaining to me the meaning of a passage in St. John. The language, a bit slower, was error-free.

You continue to be a walking and talking miracle.


FC

Reconstruction

Many days from now, maybe years, you will be able to re-read these lines and remember the incredible journey you had. You are an involuntary member of a small group of survivors of SAH (subarachnial hemorrhage). You were not asked to participate in this path. One evening exactly 5 months ago, a little artery burst in your brain altering the rest of your life and mine.

The questions I have had changed as time went by. In the beginning I asked whether your life would be spared; then I kept asking what was the prognosis. To both questions I only received vague answers from medical staff. They were keen only to mention the risks but none of them offered any hope. When it was clear that your life was safe and that you had to work on rehabilitation to get back your speech and movement on your right side, my questions were more still based on the hundreds of ways of asking why: why were you touched in your areas of strength? why being a teacher, you were denied the basic skill required to teach, why loving singing, you voice was taken from you? why. why, why? At five months my questions are no longer why but how: How are you going to realign your life with what you get back? How are we going to fucntion as a couple? How are we going to serve?

LIfe is not the same for both of us, and it is becoming clear that it will never be the same as before. Although this may sound pessimistic, I realize that looking back and yearning for the "good old days" may be precisely missing this tremendous opportunity to grow and learn, to look at life from a different point of view in spite of the losses and pain. I have spent many days struggling with self-pity, and I know you are going through the same struggle, the only difference is that I can verbalize it, while, right now, you can't.

This weekend I saw this struggle very close. I heard the silence, I saw the tears, I sensed the frustration and observed the physical and emotional pain. It didn't matter that your family was close or that the schedule was set to unwind and relax; your soul, your mind and your body all suffered. I can't imagine what is it like to be imprisoned in that cell of broken comunication. I felt so strongly that if it was possible, I would trade places with you, not only out of love for you, but also to deal with the pain of being an observer with no way to make our days brighter and more "normal". But this is the path we have to walk, the new reality we are asked to face; each with different things to learn.

Nevertheless, today, instead of dweeling in self-pity, we both embraced the pain and saw it as something temporal, as the other side of life and love, as the contrast to appreciate the goodness of life: dark only highlights the light; silence, the sound; pain, the peace. I personally began counting the number of things you can do, and both as a couple. After a while, as the list grew longer, I realized that we are blessed. That the barriers are real, but smaller than I thought. That when your life was hanging by a thread, many of our friends prayed and you lived; and now, many of these same friends continue to pray with the certainty that you will be restored. I don't know how much you will be restored, but that is not the point anymore. The process so far has been rich in lessons about love, faith, solidarity, persistence, service, tears and joy, to name a few. A more important question is how are we going to incorporate this event into our lives. In which way is The Lord going to use this situation to bless others and ourselves. So, there is no time or room for self-pity.

One day, I hope we will be able to look back and lift our hands in praise to The Lord. Right now, you are quiet after crying for a while, and that is alright too.

FC

Saturday, July 08, 2006

Overwhelmed

Dear Jan,

I am glad we will be out of town for the weekend speding time with your family. After the mayhem of the pre-move and post-move days, I hope this is a time for quiet and relaxation.

In this brief blog I wanted to chat with you about two things:

I am amazed at the endless generosity to give and help humans have. I am sure it is a sign of the "figerprints" of God in us. The "Jan" patrol has tirelessly shown so much love and given so much support, that could last for a lifetime. It is because they love you and me, it is because they are convinced that loving us expresses the love they are mandated to pass-on. Love that is hoarded, becomes stagnant and looks more like selfishness. But your friends and mine never cease to amaze me with their generosity. There is always that iridescent quality in all of them when they go the extra mile. I know you feel loved, in spite of those moments when you would rather be left alone. We realize that this is part of the healing process. But I see that, against your own sense of independence, you extend grace to our friends and allow them to serve you by receiving they offers to help. In doing this you give them a chance to express in practical ways their love.

I know you are going to a tremendously difficult time in the healing process. I see you struggling with sadness, frustration with yourself and with those close to you, isolation and loneliness. Sometimes it looks like depression, but you have assured me that you are not depressed. Sometimes the pain in your brain is too much and you cry. Sometimes the smallest exercise zaps all of your energy, a task like walking 50 meters, which most of us take for granted, to you this represents the equivalent to climbing a huge mountain. Fatigue is something you will be struggling with for a long time, and it frustrates you immensely, because you are an action woman. Most of those who have spent some time around you latetly have had the chance to see you "clicking off".

Sometimes I would like to trade places with you, give you some of my own energy, help you do the things you are doing. It is the only practical way I can imagine would relieve your burden. However, occasionally this just backfires and in an attempt to defend the little independence you have, you reject the help, leaving with mixed feelings those who are trying to help. I make the efort to remain aware that when you cry or when you say no to my offer to help, or when you ask me to leave you alone, it is really the injury talking to me and not your heart or your mind, but on occasion I lose concentration and feel rejected. Later we have to mend the fences and continue in this roller coaster that is your healing.

I know and you are well aware that love is not the issue. We love each other expansively. It is the feelings that are triggered when we push each other's sensitive "buttons" what gives us grief. I thank you for your patience and your love. I feel aknowledged also by you. When the days are dark and the feelings get heavy is when we both need more strength and grace. I know that many people are praying for your rehabilitation, I hope they also pray for an extra share of God's help when the day to day going and coming and the grief that goes with it. This is really their ultimate service of love for you and me.

Let's have fun this weekend, and hope all of our friends do the same!

-Fede

Wednesday, July 05, 2006

Back to PT, ST and OT

Dearest Jan,

Today, I got to see you again at your best at the hospital. The old Jan, the one that pulls no punches and doesn't ask for any special considerations, was back on the spot, arguing her points and standing tall. I must confess that I felt proud of you, making your points and giving the Dr. a run for his money. He wanted to talk to me, because he can't talk to you without the two of you getting into endless arguments. But you wanted to be heard. You wanted to feel validated as a card-carrying member of this society, to be talked to as a normal human being with full intellectual capacities. You refused to be labelled as a "patient", to be treated as deficient, to be rolled over by the opinions of the Dr. who was not very much interested in what you had to say. Instead, you spoke clearly and articulate about your experiences, feelings and opinions. You felt good about yourself. Once he listened to you, then you were able to find some reason in his opinion. This is the Jan I married, the one that will stand up and speak out her truth. For the length of that visit you were back with 100% of your "mojo". I know I'm biased, but that is love.

Nevertheless, what the Dr. lacks in bedside manners, he compensates with giving 100% himself to caring for his patients. In a sense, hospitals are schools about our common humanity, patients are there to complete a personal healing process as much as the health providers. Both sides learn from each other, both sides mirror each other.

It was thrilling to see your gradual trasnformation, from the quiet stance you took during the trip, the massive lunch you got at the cafeteria and then, the marching into the out-patient wing as if it was your private territory. You were in your element. You walked there as if you owned the place. You were greeted by the therapists with such love, the secretary greeted you by first name. To put this into context, the hospital sees over ten thousand out-patients a year, but they greeted you by your name! This stance continued for the next hour. We went from the reception into the Dr.'s office and later to the lab. You were glad that you will be re-starting your ST (speech therapy) and Occupational right from tomorrow.

I was so happy to se you in that frame of mind after several days of depression, that I forgot to consider all the driving that will be involved in taking you to your sessions.

I hope our dear friends will give us a hand until the Wheels-trans makes a decision on our application.

FC

Tuesday, July 04, 2006

New abodes

Sorry for the delay in blogging. I got connected only tonight.

Many thanks for the generosity and muscle lent to make the move smooth. Thanks for Hanz and Franz Movers Inc. (David and Wolf+Monica) who continued helping with unpacking, Ali, Mojgan F + hubby, Sharon, Louise, Sarah, David, Betty, Julia, Linda Ruth, Jeannie, Rudy, Enrique, Norma, Lynn, Ted, and many others of whom I am forgetting their names and who will be forgiving and understanding of my old age memory.

We live in a small flat. Close to everyone and most services. Easy for Jan to navigate, and with a friendly landlord. We kept the same phone number, and email contact information. For our mailing address, please find the info in the yahoo group:
http://ca.groups.yahoo.com/group/jan_get_well/

If you haven't subscribed, go to this link and request to be included in the group:
jan_get_well-subscribe@yahoogroups.ca

Jan had a rough time before, during and after the move. The change was overwhelming and many times she just "clammed up" or became upset. But she is a real trooper and is working hard in finding her balance. As a bonus, we enjoy a large backyard where Jan sits for hours in the afternoons to enjoy the sunshine and to relax.

This afternoon she was teaching me some music theory to apply to the guitar. I found that I am a terrible student and the teacher almost quit on me a couple of times, but thanks to her patience, she continued until I learned the lesson for the day.

As many of you know, I have taken time off work to spend with Jan. It was important to be close to her during the change, as well as right after she left the hospital. While she continues to improve in her speech and mobility, her needs have become clearer as time passes. We have become very close to each other, and she has grown to expect my presence around her most of the time. This is good because it is building our relationship (we had been a couple for only 5 months, and it was 5 months ago that Jan had her surgery), but it is also putting some strain in the planning of my return to work.

So far, I've been developing independent work options that will allow me to spend more time with her. I ask for your prayers for this. That the proposals submitted may be accepted. At the same time I am exploring other options. For those in the know, this is real water walking...

I want to remind everyone that your prayed and Jan is alive. Some of you even had marvelous visions of Jan totally restored. There was a quiet, but real power unleashed by all your prayers. Please don't stop. Now we need them more than ever.


Fede