Friday, December 28, 2007

Year end summary

As the clock ticks away this year, I am still looking for a phrase or a concept that would allow me to define its meaning, a way to talk about beyond the taxonomy of repeating the entries of my daybook listing appointments, travel, things to do, projects to finish, people to call… this is just what I’ve lived through, the actions that occupied my time and were plotted in my calendar. 2007 has something more to give, a meaning that I can’t see, probably because I am too close to it to be able to gain perspective. One thing I can say is that it was a continuation of the demolition of my old self that started the year before.

In 2007, sometimes I witnessed of the transformation of my beliefs, my dreams, the very definition of the man who answers to my own name. It is as if somehow what I was living vicariously through Jan, inexplicably became my own existence. Jan was the one with the aneurysm; she is the one who underwent surgery; she is the one struggling with aphasia, I was just the observer…or was I? In the past twelve months I have reviewed my definition of reality. I don’t’ see the process any longer as if I was observing from the other side the looking glass. Jan’s aneurysm was also mine, as much as her struggle with aphasia this year is also mine.

What does the Bible mean when it says that a man and a woman become one? Is it a comment on the sexuality of the relationship? or, does it refer to the children they beget? or is it a process whereby two individuals begin to dissolve their boundaries to the point where there is one shared psyche through which common dreams, visions, communication and life can be expressed and experienced as one? The believers of the “revolving door” theory of marriage insist that we remain individuals for life, enjoying the conveniences and good feeling marriage can bring as long as it lasts. Perhaps this is how I thought before, having myself participated in the dissolution of a marriage. Bt this time I find myself dealing with a different matrix, and different parameters I have to use to define reality. And this is where the change of my essence is taking place.

In 2005, when Jan and I decided to marry, I told myself to mean what I said and say only what I meant to do. So, I pledged her my love, my company, my words, my support regardless of her circumstances, not knowing that soon I would have a chance to test my resolution. 22 months after her stroke, I know I had to say that pledge, because it represented a matter of life or death. I could have done what I did before: retract my words, and run away to avoid the inconvenience and pain of going through her lengthy recovery. But I would not have been really living a wholesome life. So, this is what I am beginning to realize in 2007. In staying I realize that my self somehow has become one with hers. She suffers, I suffer too. She becomes frustrated with the communication difficulties of an injured brain, I do too. She feels like a portion of her self has been severed, and that she needs to reconstruct those portions of her identity that have been lost. I empathize and in a strange way, I find missing parts in my own self; I too had to rebuild a new definition of what it means to be a husband, a companion, a support for Jan and a person for myself.

A few more days and 2007 will be over. In retrospect, I choose to see blessings amidst the challenges. It has not been an easy path. Some days we both scream for a way out, for space between us, for more clarity in our communications. The sunshine of many days was obscured with our tears of frustration with a system that cannot see her as a person, of impatience for not being able to speed up the recovery, of impotence for not being able to reduce her pain. However, even in those days we have seen rainbows through the tears. We still love each other. We still are together. Jan continues to make improvements, ever so small, everyday. We still hold each other in the good days and wait together for the bad days to end. We are taking the risk of increasing her quality of life by stopping her anticonvulsant medication.

2007 is a year of change. I have changed my optics and definitions about life and suffering. She has changed her understanding of commitment and fear of intimacy. We have lived in two years a life share of pain, and we can say with hope that we know there will be one day when she will be fully back.

2007 was a year that demanded an incredible amount of courage and strength. Jan and I didn’t have it all the time. In those dark times when we found ourselves with no strength, resources or vision, it was all of our dear friends and families that carried us to safe port. We thank God for all of you and we thank you.

2008 is a blank page. We want to fill every days of it with a celebration of hope, compassion and truth.


Thursday, December 06, 2007

the unsinkable Janita Waltonski

She has done it again!

Against all odds, diagnosis, prognosis, prescriptions, therapies and experiments, she has decided that the best definition of health is her own and the best path is what she decides is best for herself. No suprise here for those with a long acquaintance with Jan. She just found herself beyond the end of the rope when one the same answer from the medical establishment came back one too many times: we don't know what causes such strong reactions to the drug therapy. You need to continue trying new drugs until we find one that will work with you. Easier to say than to do. She was on the 11th tryout, with the same results: drowsiness, difficulty finding words, pain in right side, difficulty understanding, difficulty hearing, reduced vision... if she continued this path, soon she would be like Helen Keller...looking for a miracle worker.

So here she was tonight, bringht and alert, with an unusual energy level, with great clarity in her words, and minimal difficulty finding words, all due to the fact that she decided not to take her pill today. It is a difficult choice: increased risk of seizures or dramatically decreased quality of life.

We went to the last class of a course we have been taking for 10 weeks. Sometimes she attended but had to lie down in one of the couches because of extreme fatigue, also, she could not participate much because she could not find the words... so she would come home frustrated and sad for the losses... she would say that she would rather die if this is the type of life awaiting her under these medications. Tonight she was awake, alert, talkative and walking on water... so to speak.

We don't know where this road is going to take us, we both embrace risks. Tonight we prayed that her brain would be protected from seizures w/o the drugs. It is a journey with no map, but with a strong sense that God is walking right next to us all the way, and that the tender hands of those who love us will be holding ours.


Thursday, November 15, 2007


It's been a month since the last blog. Here is the update for those who still read this.

It's Nov. 25 now. Jan continues to make progress in some areas. People who see her once in a while can see the improvements with greater ease than myself or Jan.

She started the 11th medication a couple of weeks ago with the well know struggle with the side effects. We both pray that one day she will just be free from these terrible but useful drugs to control seizures.

Access to neurologists in Toronto is more difficult than getting an audience with the Prime Minister or the Pope. We saw a neurologist at the beginning of November. When we called her secretary to make another appointment, we were told the next available appointment is in June 2008! that's more than 6 months from now. This is what the Minister of Health calls a "good system"! So, in case Jan's struggles become more acute, the only option we have is to go to the emergency room, which costs to the system several times what a regular visit to a specialist costs. Arrrrhhhh! Who is running this province?

Some days are good, I see that Jan moves around and talks almost normally. Other days are more difficult, where I can hardly understand what she is saying. On the difficult days, our communication deteriorates quickly, and the likelihood of conflict is always present. I perceive a hypersensitivity in her to everything I say or do. Almost innevitably, at one moment or another I will be caught off guard and we end in crisis. I say something she takes as criticism or something in the tone of my voice or the expression of my face, anything can trigger an explosve reaction.

These crisis look like this: her voice increases in volume. She starts crying and her words become more scrambled. In less than a minute I hear only incoherent sounds, a single sylable repeated many times, just like when an old CD gets stuck on a scratch or dust. She then will fall to the floor wherever she is and continue her crying lowdly. I've learned to put aside my emotions and look at her safety and comfort. But no matter what I ask or tell her, there is no response. There is no use for explanations. That can only happen after she "comes back". Eventually, the sobbing will stop and she will stay there, on the floor sometimes for a half hour, with no energy left, semi-unconscious, like a rag doll.

I can't describe my feelings when I see her in this condition (sadness, loss, guilt, anger, impotence, or all of tehm at the same time). I feel responsible for all these crisis even though I know I am not. But that is the deal, and this is life in real time. It has a tremendous effect on my psyque. I realize I am struggling with time and a sense of direction more and more these days.

On the bright side.... what side is that?


Core commitments

Life is an emotional ride.

The ride has been full of emotions. Everyone who knows Jan, knows that one of her essential methods of expressing life is through emotion. Ironically, in this healing stage, emotion seems multiplied. The medication (Jan is now testing her 10th. medication), together with the rebuilding of the neuropaths is creating this effect of magnifying a set of already strong emotions. So, on a clear day, you can see Jan extremely happy, or extremely frustrated, or extremely sad. In between, there are days when in a lethargic state, she will just let things go by.

I don't fit the regular stereotype of a happy Mexican. Somewhow I learned very well to keep my emotions under control and to keep them to myself. So life is not as emotional when i am by myself. Jan bring this to my life. She has plenty of emotions, enough to last for a life time for the two of us. Someone once told me that "she wears her emotions on her sleeve", I find that a very accurate description of her. But, if she wears her emotions so much on the surface, I wonder where do I wear mine? in my socks?

Have these emotions affected our core commitments? Sometimes, in the heat of an emotional outburst, I hear her frustration with my limited ability to be there for her, with my shying away from her need and pain, with my inability to embrace her when she is in pain or feeling dyzzy and confused. Then, I hear her say: I can't go on anymore! When this happens, I struggle in my soul with my own feelings of inadequacy and selfishness.

A recurrent question I ask myself when I am in the dungeon is: what do I expect from a relationship with Jan?

Friday, October 12, 2007

blogging and hoping

Hi all (those I know and those I don't), blogging is a wonderful tool to keep everyone informed about Jan's progress after her aneurysm last year. I am impressed of the number of friends Jan has collected over the years that still keep in touch. I know she has done her share to maintain these contacts alive. So, it is true that you reap what you planted. She planted friendship and that's what she is harvesting. In addition, she has this wonderful extended family that has made the wagon circle closer in her time of need. I say to all of you: cheers! May your love for Jan never dry up.
Her progress after the last surgery continues at one level. With no staples, her growing hair is covering the scar fast; soon it will be unnoticeable. She has said that she is ready to grow her hair long again. On the other hand, she is starting a new medication, yes, number 8. For a week she has to take both together, reducing the previous and increasing the new until she is only with the new. This new medication allows her greater speech skills but makes her drowsy. We don't know yet its full effect because there is a mixed effect right now. She is looking forward to stopping the medication sometime in the future.

For me, time seems to have frozen in multiple ways (I talk about my own experience because Jan asked not to talk about her thoughts or feelings, she prefers to do that for herself. Yes. most of this blog is my own take on the process). Time seems to be moving ever so slowly. I now realize that I'm running a marathon, when my conditioning was for hardly 100 meters. The daily grind is absorbing beyond belief; I often find it difficult to see beyond my nose. I experience life as empty of meaning. Some days, little makes sense. Just like Jan is having now trouble with making sense of reading or listening as a result of the medication, I also experience this disassociation between what I thought I knew and what I see, what I can grasp of the daily grind. There are days in which I feel all alone and puzzled, I realize how tough life as a main caregiver really is. I question everything. I feel I'm at the end of my rope; stretched to the limit; I doubt, I moan, I fall, I get up again, and then at the end of the day, I just remember that my call is to serve Jan today. Tomorrow is another day. I remember that I made a vow to Jan in our wedding that I would love her in health and in illness... and well, this is the time to do it. I am convinced that serving Jan is my most basic attempt to live in integrity: at some point in life I must mean what I say and say what I mean. "I must keep my word and honour my commitments". Anything else would be delusion and deceit. Some people find this out of the ordinary, but in reality, I would expect Jan to do the same for me, and I suspect everyone would expect their partners to be there for them in similar circumstances. It is the way we are re-wired when we meet Jesus. We have the wiring in place, it’s just that we are too busy with ourselves trying to change the original design. Why have I stuck to Jan? Because I believe Jesus did the same for me and because I pledged her my love in thick or thin. And, so, on a day to day basis I raise above the blinding pain and confusion and reframe my life. This is not easy.
I struggle with the existence and meaning of suffering. Jan’s aneurysm raised an old question in my mind, a question as old as the book of Job. Like him, we have suffered when the core areas of our life as a couple were touched: health, family, and finances. I feel troubled not so much by experiencing suffering, but by feeling that this suffering is undeserved. I have asked Why? Why her? I have protested loudly and I have not taken silence for an answer. I know that this suffering is not a form of punishment or divine discipline. When I look around I realize that the amount of pain does not correspond to the amount of wrong a person does, there are criminals who prey on the weak and defenceless who seemingly go through life without the punishment they deserve. Paradoxically, the opposite seems to be true: often those who do right are the ones who get knocked down and sometimes they can’t get up again. E. Peterson says “this is the kind of suffering that first bewilder us and then outrages us. Just like Job who was doing everything right when everything went wrong” . However, this is the kind of suffering that brings us closer to God, and instead of ending resentful and disappointed, somehow we love God more. God does not promise to take away suffering but we know that he is the God that walks with us through the suffering just as he showed it in Jesus -the suffering man-God.
Yeah, it is not easy to live through Jan's healing stage . Given the option, I would rather not choose this path. However, in spite of the suffering we have gone through, I find myself with more strength and inner peace than I could have imagined. Go figure.


Wednesday, October 10, 2007

The Staples Are Off!

We had an appointment with the Plastic Surgeon who did the Craneal Reconstruction this afternoon at 1pm, right after lunch. Jan had become used to the staples on her head. It gave her such a 'Goth' look that they were really the envy of some teens.

A couple of residents came and took Jan's staples before the actual surgeon showed up, so there is no more staples, just the scar that is healing nicely.

This is -we hope- the last visit to the hospital. Her hair will grow out in time, unless you know of a secret recipy to help Jan's hair grow faster.

I will give more details in the next blog,


Tuesday, October 02, 2007

Reality Check

It's been a week since the surgery. times is totally liquid. Jan was sent home last Friday. The medical staff felt she was stable enough and demand for beds was high. She has this hairdo as a result of the surgery that I am sure is the envy of teenagers, besides, for a short time Jan has more metal on her head than some youth who carry rings in every possible place on their faces. But she is happy that this surgery is over. We had been waiting for it for over a year, so you can imagine the relief.

She has good days and days not so good. Most of her energy seems to be taken by the healing. She has to face pain constantly, and the inconvenience of having to be extra careful with the 20cm. of scar and staples. She slept most of the day yesterday, feeling with no energy or desire to do anything else. Today, she struggled with pain and the side effects of her medication. And this seems to be the pattern for the next few weeks.

Yesterday morning she woke up with a swollen head. there was an excess of fluid on the left side. She felt lousy, but when I suggested that we should go to emergency she refused vehemently. We know what it would be like: to wait for at least 6 hours before an MD comes to see her. She felt faint but decided to rest instead. By the afternoon the sweling had receded and she was a lot better.

Keep her in your prayers. For a safe healing of this wound. For strength to go through the process. For pain relief. For hope that her neurologist finds a good medication that Jan can tolerate. For better communication and patience.

Here Jan' new look:


Wednesday, September 26, 2007

Jan migrated to D5

Mom and I came to visit Jan and had a good lunch (she ate half of my lunch and tried to share half of the hospital version of her lunch). Louise and Sara came later and when we were in the middle of the visit, Jan was moved to D5. We say the familiar hallway, familiar faces, and to our surprise, there we saw Renat, the wonderful social worker from this unit. She came right along to greet Jan and recall the weeks Jan was here last year after the major surgery. In total, Jan was at this hospital for about 6 weeks, so we got to know the nurses, social workers and therapists. It is a strange feeling to feel we are coming back to a familiar place, but at the same time acknowledge that this is the kind of place one would want to spend the least amount of time possible.

At lunch, I ran into the plastic surgeon in one of the hallways. He was very pleased with the operation and said that if she continues this rate of progress, she may be sent home as early as tomorrow.

Jan's right side is weaker than it was a few weeks ago. It may be the pills or just the effects of the surgery. Her face is becoming a bit swollen from all the fluids draining down from the head. The doctor said it would be a matter of days before everything goes back to normal.

Stay tuned,


Tuesday, September 25, 2007

The New Hairdo

Jan was in a lot better space today than yesterday. We arrived for the visit in the early afternoon. It was a scorching day out there! She called Mom and I to order for arriving late, indicating that she was feeling lonely all morning with no one to talk to because the nurses are all busy, and then, she settled into to a non-stop conversation mode for then next five hours.

I asked her if she had seen her new hairdo. I thought it was lovely. I said that she looks just like an independent teenager with an 'out of the box' fashion taste.

She said: No, these nurses and doctors are running all the time, they have no time to bring me a mirror. Mom didn't have one either, so I went to a nearby mall to find one. When I came back, Dad and Carol had arrived. So all of us had a great time seeing Jan check out her new hairdo. What do you think? Should she dye it pink or blue?

Her progress has been amazing from one day to the next. Of course, I am comparing to last year's experience, when it was weeks before she was able to say a word and more weeks before she could walk. She is taking an antibiotic as a profilactic measure, to keep the wound from infections and keeps taking her regular pill for seizures. Otherwise, she is very alert and in a very good frame of mind.

During the time I was there, she decided to go to the bathroom; the nurse and I walked on either side holding her hands, but her walk was very steady. She began asking for solid food when the chart indicated only fluids. She called two or three nurses and told them that she was starving, that she wanted some real food! One male nurse obliged and placed a special order for her. By 7:00pm Jan was eating her supper with such glee that everyone celebrated.

As you notice in the pictures, her bandage was taken off this morning. She was looking at the hairdo with delight and at her scar with curiosity. they cut exactly along the same lines made in the first operation. If experience counts, her scar will become a fine line in a few weeks and hair will cover it, so it will be invisible.

Many, many thanks for your love and prayers. You were as important in this process as the surgeons themselves (it's no exageration).



Monday, September 24, 2007

Surgery results update

"God always does what he says, and is gracious in everything he does [...] God's there, listening for all who pray, for all who pray and mean it." Psalm 145:13,18

"O my soul bless God. From head to toe, I'll bless his holy name! O my soul bless God, don't forget a single blessing!" Psalm 103:1-2

Hurray! Jan is back!

The operation was a success! We didn't get a chance to talk to the surgeon, but his report through his colleagues was positive. The operation lasted about 3 hours and Jan was kept in the recuperation room for another 4.5 hours. Jan was awake when they moved her to the Intensive Care Unit at around 5pm today. She spoke to Mom and I as soon as she saw us. She was a bit dopey, but was able to manage a smile and also to give the nurse some instructions about the pain medication she prefers! 20 minutes after her arrival to the unit and she was already making sure everyone knew she was there...

She is looking beautiful! They shaved the front half of her head (about 2 inches above the hairline) and left the back half untouched, so she looks like a distinguished Chinese scholar from an ancient dynasty. She has a large patch covering the front half of her head, tubes and wires connect her to oxygen, an electronic monitor and an IV solution. We talked a few minutes and then left. She was tired and wanted to sleep. Sleep is the best medication for someone in recuperation. I think I am in recuperation as well because I am feeling quite sleepy.

She will remain in Intensive Care overnight, and probably, she will be transferred to a general ward tomorrow or the day after.

Thank you for your prayers and for strengthening our faith. We have learnt so much from this whole thing. In the months ahead we hope to have the time to share it with all of you. For now, join us in praising the Almighty! He has been good to Jan and me.


Jan is out!

1:50pm. The volunteer in charge of passing information in the waiting room, told us that the operation went allright. Jan is in the recuperation room (I assume it is next to the OR area). We are directed to go to the 5th floor to the Intensive care unit, where she will arrive. This is the same Unit Jan saw over a year ago after her first visit to this hospital. the one that a day after Jan was moved to a general ward, was flooded and closed for a few weeks while crews worked frantically to repair the damage.

Teh surgeon came to the visitor's area when we were at the cafeteria. So we went looking for him to his office. He is still operating, so Mom and I went to the waiting area in A148 to pick the bags with Jan's clothes. We also have a blanket that she forcefully insisted we bring. She knows that the hospital blankets are not warm enough for her. Mom and I look like two hikers looking for a place where to pitch our tents.

Wait, wait, wait. This is the main game in hospitals. I wonder if this is why the main clients are called "patients". You need the patience of Job in this place.

Mom and I migrated to the small waiting area in the 5th floor. We are told by the nurse at the reception desk to wait for about an hour because there are no beds available... So we can't see her yet... We'll keep you posted.


"C" Day

Jan went into the OR at 10:15am.

She was calm and in a good spirit. A short nurse with a heavy accent came to take her from the patient waiting area in the 2nd floor OR section. She asked Jan a few standard questions about consent for the operation, recognition of her own signature, allergies. Jan joked that without her glasses she was practically blind, that she could not see the face of the nurse but trusted she worked for the hospital; the nurse did not catch the humour, but politely assured Jan that everything was fine. All we could she of her face behind the surgical mask and cap was a pair of dark eyes with very long eyelashes, she was probably in her early thirties. She checked Jan's bracelet and compared that to a card with Jan’s information to make sure this was the right patient. I could not help the thought that without these checks, probably in the past some patients were carried into the OR for illnesses they didn't have. From where we were, we could see the ORs, a series of rooms to the right of the hallway with sliding opaque glass doors. Right in front of us, a flat screen monitor with codes and info on each one of the ORs -just like the ones used at the airport for flight information- names flashing, numbers changing, nurses carrying people in and out of these rooms, people being wheeled-in, people being cut, people being put together, lives right on the line, some make it, others don’t. The nurse went into one of these rooms with Jan. This is as far as we were allowed to go. Mom and I picked up Jan’s bag’s of clothes and proceeded to the waiting area.

We started the day at 5:45am. I could not sleep, so I got out bed and went to the other room to do push-ups. Jan was half awake. At 6:15am we were all up, and left to the hospital at around 6:40am. There was hardly any traffic, so we made it to the hospital in a third of the regular time. Jan talked to Mom and as a co-pilot gave me instructions on every turn, every stop light and every movement the car made.

Upon arrival at 7:00am, we went to the day-surgery reception area in the G level, to check-in; where we waited for about 75 minutes for our turn. About 20 people sat there also waiting. At last an old black nurse came for Jan. About a half an hour later they asked Mom and I to join Jan. She was on one of this new sleek Patient Transfer Board (PTB)–in an adjacent area with about 10 cubicles separated by sliding curtains. This is where they ask the patient to strip of their street clothes and take off their jewellery, and are given one of these blue gowns with an opening on the back. This is where the social persona is left behind and everyone becomes a patient or the relatives of a patient. It’s like entering into a different country with different dress and behaviour codes. Illness is a great equalizer: no one can show off their expensive clothes or fashion shoes. People are united here by the fact that they all are suffering from one illness or another, wating to be cut and stapled together; their bodies are no more than delicate membranes filled with water. Everyone here is stripped naked, covered by the same thin humble robe, stripped of any delusion of self-importance and grandeour. It is clear that the only difference between one patient and the next is just the unique consciousness of an individual experience and the memory of it. We waited here for another 45 minutes and then we accompanied Jan to the second floor, to the waiting area just outside the ORs.

Mom had been reading aloud from a novel Jan likes. At times Jan laughed at the story. I heard the words, but could not attach any meaning to them, my mind was busy thinking about our presence here for the third time, about the last 19 months of our lives, about the lessons we have learned, about the profound changes in our personalities and faith.

At 10:15am We said goodbye, I love you, sweet dreams, and there she went, on that sleek new PTB, under the several covers because she was "freezing" all the time...

Mom and I went to the cafeteria to wait for the 3.5 to 4 hours the operation will take. Coincidentally, I bumped at about 11 am into Dr. Schwartz, the neurosurgeon, who was in line on the coffee shop. we had a brief talk about the clip jan ahs in her brain and he mentioned that he was "on call" in case they needed him for the operation (see recent blog!). But he was going into is office... hmmm.


Sunday, September 23, 2007


The surgery will be Monday, September 24 at 9am.

The preparation time has been emotionally draining for all. Jan is doing a lot better with the new medication, but still there are some side effects that Jan would like to get rid of.

I have learnt that neurology is more art than science, medicine knows still very little of how the brain works or heals and when a medication is prescribed, it is a hit and miss thing because each individual reacts to the chemicals in a different way!

But don't get me wrong, I still respect the efforts of the surgeons and specialists, even though their knowledge is so limited. They are courageous people to do what they do, knowing what they know.

Here is a picture of what they will "fix" in Jan's head, except that instead of the bone flap Jan will get a plate made of polymers:

Please join us with your prayers in this stressful time. Before, through and after science we trust that the maker of Jan's brain will protect her.


Friday, September 21, 2007

The Friday before

The countdown has begun!

The time of the operation was moved earlier to 9:00am on Monday, 24-Sept-07. This means we will have to be there at 6:30am. I am feeling tempted to pitch a tent in the park across from the hospital to make sure we are on time.

This week has been particularly hard for Jan as she struggles with the 7th medication she tries for seizure control. The effects are just overwhelming and the difficulty to access the neurologyst on a short notice makes it more difficult. Her right side has been "emptied", as she describes it; there is little or no sensation, the right hand is totally limp most of the time, and there is a generalized feeling of unwellness all over. She says that her head "is out there" and indicates a point in front of her. She tires easily and is emotionally over-reactive. The quality of life is so low that we wonder what is best, to risk a seizure by not taking the medication or give up a normal life and live like a zombie.

I watched this afternoon struggle on the phone with the insurance company. In bits and pieces, she told them her frustration when she received this morning a letter from them rejecting her application for extended health because she had an aneurysm! We realized that now that she is down and needing coverage for medications, the underwriter let her know in no uncertain terms that she would not receive any coverage, which is the same as telling her that she is not welcomed to apply. Business logic? Discriminative action? At the end, it didn't matter. After talking with 8 people, she received the standard "we will call you later". She was loudly discouraged.

I wonder how could I (we) make her stronger so she goes to her operation rested and strong.

We are stressed even though we know it is a routine surgery.

I will print for her any emails you send. Make them short because she can't read more than 40 or 50 words at a time.


Thursday, September 20, 2007

Surgery number 4

It has been 19 months and 9 days since Jan was rushed to a hospital with a blood clot in the left side of her brain the size of a golf ball. In the first three days, she had two operations to stop the bleeding and to repair the damage caused by the aneurysm.

Almost four months later she had another operation to get the bone flaps replaced above her left ear, which had been kept out of head and in a freezer, to allow extra room in case of swelling of the brain. The operation was not a complete success, because the bones were already dead after all these weeks in a freezer. Jan came out of this surgery sporting a perfectly round head -only for a few weeks- and with the onset of seizures that still plague her until today.

Her body did not "recognize" this dead bone material and began to dissolve them slowly, leaving her head with a dent on her left temple. The neurosurgeon, in a consultation last November, agreed with Jan's request that the dent had to be fixed, and so the lengthy process to schedule an operation began.

10 months later, the neurosurgeon who fixed the aneurysm and the plastic surgeon who put the dead bone pieces, finally found time to fix this problem. A polymer plate has been "designed" to match the contour of Jan's head. It will be attached to her craneum with titanium screws after the old dead bones are cleaned out. According to both surgeons, this surgery is low risk, because they will not touch the brain again, they will just work over the "dura madre" (the hard membrane that covers the brain), place the plate and then close the skin again. All this will take about 4 hours. Yeah, there is no drive-in for this kind of surgery! Then, Jan will stay 3 or 4 days in the hospital for observation, to make sure everythis is allright.

The surgery is scheduled to take place on Monday, September 24, starting at 12 noon.

Why am I telling you all this? Because we need your prayers. Not to change God's plans, but to strengthen our faith and patience.

If you happen to feel that you want to send some love our way, we will welcome it with open arms.

How can you send love to us? Well, we will leave that to you. However, be assured that we will know and will be glad when we receive God's love through you.

If you want to keep updated, check the blog:

If you want to drop a line for Jan, write directly to her at:

Thank you for being there for us all this time.

Fede and Jan

Tuesday, September 18, 2007

Reconstructing Jan

Hi all,

I know, I know, I didn't keep updating the updates more often. Strangely enough, I feel no remorse. So, here are the latest news:

Jan, Mom and I went to see the plastic surgeon today. He has scheduled Jan's head reconstruction for this coming Monday, Sept. 24, 2007 sometime in the early afternoon.

They got last week the polymer plate that will make Jan's head round again. Jan will be doing some pre-op tests to make sure everything is on order.

The operation is expected to last about 4 hours. the first part will be done by the same surgeon that clipped Jan's aneurysm, the second part will be done by the plastic surgeon.

After the operation she will go to the neurological ICU for the following 24 hours. Is she is doing well and there are no complications, she could be home in 3 to 4 days.

They showed us a picture (CTscan) of Jan's craneum and how it will look like after the operation. I must say it looked beautiful! So Jan is willing to go for a few weeks with a half- shaven head

This operation will cut only the skin and clean what's left of the flap bones. It will not cut the membrane covering the brain (dura madre), so the brain will be untouched. They hope not to bruise the brain.

Jan had a big sight of relief. This should be the last operation related to the aneurysm. I saw her very happy now that she will be growing her hair long again. She told me that she had not cut her hair short in all her life!. As you can see, her vanity is intact, perfectly undisturbed by the aneurysm. :)

Here is what you can do (if you are going to do anything):

1. Pray that the surgery may be successful in all ways, this will ensure that she will not have to go back in the future for more surgeries in her head.

2. Pray for the family, as this is an added stress in an already stressful time for several how are experiencing medical difficulties.

3. Check the blog for updates (I will try to post daily progress notes)

4. If you decide to visit Jan at the hospital, remember:

  • that she loves your company, but she needs quiet and rest.
  • that she needs you to bring positive energy to her, if you are not in a positive frame of mind, please don't come as this will only drain her energy.
  • keep your visit short.
  • she needs your touch, but do it ever so gently, as the medications have made her over-sensitive to touch. Remember that her right side is over-sensitive.
  • When visiting and talking to her come to her left side as her vision on the right is limited.
  • She loves your greeting cards better than stuffed animals or toiletries. You don't need to buy expensive cards, be creative and make your own! She loves original art, particularly if it comes from you.
  • Bring a recent picture of you for her collage and write your name on it so she can practice repeating your name.

I found this very useful list in a wonderful book written by an MD who is an aneurysm survivor. It should give you a good perspective of what patients need. Of course, this surgery is not as instrusive as the one when they clipped Jan's aneurysm, and jan has already "graduated" deom many of these stages, but the list is still useful to make your interactions with Jan more satisfying for you and her.

40 Things I need the most

1. I am not stupid, I am wounded, Please respect me
2. Come close, speak slowly, and enunciate clearly.
3. Repeat yourself -assume I know nothing and start from the beginning over and over.
4. Be as patient with me the 20th time you teach me something, as you were the first.
5. Approach me with an open heart and slow your energy down. Take your time.
6. Be aware of what your body language and facial expressions are communicating to me.
7. Make eye contact with me. I am here –come find me, encourage me.
8. Please don’t raise your voice –I am not deaf. I’m wounded.
9. Touch me appropriately and connect with me.
10. Honor the healing power of sleep.
11. Protect my energy. No talk radio, TV or nervous visitors. Keep visitations brief (five minutes)
12. Stimulate my brain when I have the energy to learn something new, but know that a small amount will wear me out quickly.
13. Use age appropriate educational toys and books to teach me.
14. Introduce me to the world kinesthetically. Let me feel everything.
15. Teach me with monkey-see, monkey-do behavior.
16. Trust that I am trying –just not with your skill level or on your schedule.
17. Ask me multiple-choice questions. Avoid Yes/No questions.
18. Ask me questions with specific answers. Allow me time to hunt for an answer.
19. Do not assess my cognitive ability by how fast I can think.
20. Handle me gently, as you would a newborn.
21. Speak to me directly, not about me to others.
22. Cheer me on. Expect me to recover completely, even if it takes twenty years!
23. Trust that my brain can always continue to learn.
24. Break all actions down into smaller steps of action.
25. Look for what obstacles prevent me from succeeding on a task.
26. Clarify for me what the next level or step is so I know what I am working toward.
27. Remember that I have to be proficient at one level of function before I can move onto the next level.
28. Celebrate all of my little successes. They inspire me.
29. Please don’t finish my sentences for me or fill in words I can’t find. I need to work my brain.
30. If I can’t find an old file, make it a point to create a new one.
31. I may want you to think I understand more than I really do.
32. Focus on what I can do rather than bemoan what I cannot do.
33. Introduce me to my old life. Don’t assume that because I cannot play like I used to play that I won’t continue to enjoy music or an instrument, etc.
34. Remember that in the absence of some functions, I have gained other abilities.
35. Keep me familiar with my family, friends, and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them.
36. Call in the troops! Create a healing team for me. Send word out to everyone so the can send me love. Keep them abreast of my condition and ask them to do specific things to support me –like visualize me being able to swallow with ease or rocking my body up into a sitting position.
37. Love me for who I am today. Don’t hold me to being the person I was before. I have a different brain now.
38. Be protective of me but do not stand in the way of my progress.
39. Show me old video footage of me doing things to remind me about how I spoke, walked, and gestured.Remember that my medications probably make me feel tired, as well as mask my ablity to know what it feels like to be me.

(from Jill Taylor, My Stroke of Insight, 2006)

Thursday, August 30, 2007

Making space for a miracle

Last Monday when the men's group showed up at the hospital to give emotional support, I was in a low point. Feeling shipwrecked in the middle of an ocean of hospital red tape, I was ready to grab any sign of support coming my way. Somehow Orest must have felt how I was. He called late in the afternoon to ask if I was open to meet at the hospital with the group. I accepted without any hesitation. They were going to visit another man in bad shape at a rehab place, and then they would be at the hospital where Jan is.

This group of men meets weekly after work. The meetings go from 7pm to 10 or 10:30pm in an office or in a park. This is not the first time I belong to a men's group, but this is the first time that without any affinity with the group other than being a male, I was willing to give and receive support from other men. The only person I knew from before was Orest, the rest were perfect strangers to me. This is why I found their support more refreshing and genuine. When these men came to meet me at the hospital on a Monday late at night, just because they made the commitment to support me whenever I am in need, they are teaching me more about compassion than 100 books. Counterculture, no doubt. Undoubtedly life strengthening. Simply, men helping men. And I welcomed their visit and filled my need. No hocus-pocus. No deep dissertations about the nature of pain. They came and share with me personal stories. One of them told me how he kept afloat just going day by day when his wife was dying of cancer, another shared his insight on how to react from what he is for his family rather than from what he feels when his wife slams doors because she made her angry. Orest challenged me to make room for a miracle. And the day folded in a peaceful note. I felt comforted by the compassion from my friends. I realized that night that I was including them slowly also as my people. Fede, the island, was joining the continent!

Two days went by. I kept thinking about Orest’s comment: how to make space for a miracle.

Last night, during my visit, I had read Jan the story of how two blind men followed Jesus asking to be healed; how he told them:
-"become what you believe",
and then their sight was restored (Matthew 9:27ss). She repeated slowly the words
-"b---become, b---believe"
and soon after went to sleep.

I went home thinking about the profound interaction between what we believe and what we become, this was one of the core lessons in the Leadership course. If I believe that the tenets are light posts that will make me a better leader, and if I act on this belief, I will certainly become a better leader. Then, I thought that the notion that “I am the source” [of my problems and solutions] could be also applied to health. More than 80% of our sick-time is caused by psycho-emotional problems. We make ourselves sick 8 out of every ten times!

I know that Jan’s aneurysm has little to do with what she believes, but the dozens of health professionals we have dealt with in the past 18 months have told us that her recovery would depend in great part on her belief and attitude. She would go as far as she was willing to go. In the story of the two blind men, Jesus put the solution back on them. It was as if he was saying that “they were the source” of the recovery of their own sight! Their belief that they could be healed was the key. Were they ready to own their results?

Against all prognosis and statistics Jan had recovered a big portion of speech, and movement. A bit over a week ago we were biking in the park. Then, suddenly, all sense of balance was gone. One day, she woke up feeling dizzy and without any balance she fell to the ground and could not stand up again. Now, a week later she was still dizzy, without balance, loosing speech and movement and feeling miserable. I saw this situation as a way of making space for a miracle. All else had failed. So I went to bed with this question: how would it look like if Jan and I believe that she is the source and that we have been given the tools for her to be well?

The neurologist still had no idea this morning about what is going on with Jan. He wants her to have an MRI, but she shouldn’t until they know the material of which the clip in her brain is made. But they can’t find out because the surgeon is on holidays, and on and on…

When I called her at lunch time she was going downhill. She could not enunciate words, she was crying inconsolably all the time she was on the phone. In fragments of words I understood:
-"..I ssss..leep 'til noon..., I wwwwant home, pppplease, no more p----pills!, I don't w---want to be here. I am getting w---worse".
I could hear my heart joining her cry with a low, deep moan. This is my wife, I thought, the woman I pledged my love. What is there to do when the medical establishment doesn't know what else to do? I mumbled some comforting words to her and cried in silence on this side of the telephone line for a few seconds. Then, I asked her:
-"do you believe that somehow you could get better?".

Up until this point we had believed that the doctors were going to find a cure for whatever Jan had. But they had gotten stuck in a quagmire of paperwork and liability issues of their own make. I thought that maybe this was a good time to believe “outside of the box”, so to speak. What was there to lose? And so, I repeated my question to her:
-do you believe?
-She said “Yes, of c---course. I k---know.”
-“I love you” I said.
-“Me too. Bye now”, then, she hang up.

I arrived at the hospital at about 6:25pm. Jan was circling in the middle of her room with her arms outstretched and a huge smile on her face. I asked her a bit surprised:
-”what happened?”.
She said,
-“I am well now! [her aphasia was hardly noticeable] I was sitting here all afternoon f-feeling sleepy and dizzz-zy. Then, I felt s-something f-funny inside my ear. I began to wiggle it, and pull it, and all of a sudden… pop! I felt fine. My head was clear. I stood up holding the wall, thinking that I was going to feel dizzy, but I felt fine! So, I let go of the wall and began w-walking without any support or help; then I began walking in circles, and then you came in! I am fine! I am well!!! Ha, ha, ha!”
With her arms outstretched she came to the door and hugged me. I was overflowing with joy. So I asked her,
-“So you… you believed?
She said laughing:
“Of course! The Lord heard me say that I had had enough. And here I am, well. Praise God!”

About 30 minutes later the neurologist came doing his rounds. I had brought my guitar and was singing with Jan to celebrate. We both were sitting on the bed. He knocked gently at the door and walked in. Jan received him with a big smile and then suddenly she stood up without any help. I saw that he was quite surprised to see the improvement. He said that he didn’t have an explanation for this dramatic change and ventured a couple of not very convincing diagnosis. I think he is a compassionate man, because soon after he just expressed his relief for Jan and told her that she could go home tomorrow. The MRI will be done later, when the paperwork mess is sorted out.

Is there room for a miracle in my life? Well, I just witnessed one. It was as if Jan would have found her “mojo” and opened her heart to freely express her faith that she would be well. I know I used all my "mojo" to believe with her that faith had to have some concrete application.

Is there room for a miracle in your life?


Monday, August 27, 2007


Jan is back in the hospital with a dizziness and lack of balance that no one can explain.

SinceWednesday she has undergone many tests (CT scans, ultrasounds,ECGs, Dopler, etc.) to find some cause to this problem. She was kept in the hospital because of her aneurysm; dizziness and change invision are two of the five major symptoms of a stroke. So the doctors decided to act with caution and admitted her on Thursday.

She is in a good spirit and impatient to get some answers. So am I.

My first reaction was to act small, complaining about the medical systemand the MDs about their wishy-whashy answers, being impatient with the nurses and with the commotion of the Emergency Room. As if anyone had the power to puch a button and stop the ocean of pain that floods the ERs. But then, I realized that I was the one who called 911!! and that these people were doing the best they can under incredibly stressful circumstances.

The second day, realizingthat this was not going to be solved right away, I decided to change my mod and see this situation as a chance to react with integrity. She is now in a quiet room with a beautiful view of the lake.

What Jan needs most ispeople who bring her energy, not people who drains her of her energy,and when I act from my smallness this really drains her from her energy. I have made the point of keeping all my conversations with her aligned with my purpose of being an energy-giver to her. So far so good.

We keep very close to each other and we both have deepened our faith regardless of the challenges and outcomes. I find this very liberating.

I will have to keep balancing my regular life with spending time withJan. It is possible that I won't post much in the next few days, butI wanted to at least share with you my whereabouts and my current main struggle. I want to participate fully with Jan these days and be compassionate with her and with myself.

In these days of extraordinary circumstances, I need to use extraordinary lessons.


Thursday, July 26, 2007

My left brain and I

Ever since Jan was rushed to the hospital I became intrigued, thirsty and a times desperate for more knowledge about how the brain works. I wanted an answer to my questions: how much function is Jan going to recover? When can I say this is as good as it gets?

Unfortunately the specialists limited their answers to euphemisms. I didn’t know if they refused to tell me more of what they knew or they were just being candid when they said that they knew very little about how the brain works and heals; that Jan’s determination would define how far she could go in her healing. This, of course, was an invitation to go find more information.

I remember the first time I took her for a wheelchair trip around the hospital. She had been there almost two months. She could hardly sit straight and carried her head to the side. The right side of her head had her usual long hair; the left side had been shaved. She looked like one of these modern girls with a weird hairdo. She had a big dent about 4 inches long by 3 inches wide and an inch deep. The surgeon had kept the flap bones of her skull out to give her brain some room to swell. She could not talk, nor could she stay focused more than 10 minutes. She cried unexpectedly and then she would just drop her head without any strength like a rag doll. The surgeon had surgically removed the portion where the language centre was originally. How was Jan ever going to speak again?

That was over a year ago. Somehow Jan’s brain has re-written the language program in another part of her cortex. Medical science doesn’t know how this happens, but it happens. Slowly, over many months, Jan has rebuilt her ability to speak. She still can’t find some words, but her conversations are getting better all the time. Her right side is regaining feeling and movement. So, what happened in her brain? What part told the other to help? What part re-wrote the dictionaries, What part linked them with memories and emotions? Which part creates the words? which part understands the words? Which part reads the non-spoken part of communication such as body language? How does it all come together?

I wanted to know how far Jan would heal, how I could help. I wanted to know more about her brain and mine.

So, I began reading all that came to my hands about the brain and its injuries, about it incredible capacity to rebuild itself, about the wonderful plasticity that shows its capacity to change and adapt all the time.

(will continue tomorrow)

Tuesday, July 24, 2007

Doing well

Hi all:

If there is anyone out there in cyberspace reading this blog, I want to make a statement of ownership. All the views in this blog deal with my views and opinions about Jan's journey from the top of her life to the edge of death and back. Other that a couple of lines she wrote months ago. The rest is all from my own head and heart. Jan may or may not agree with my views. if you want to know how she is feeling, you better talk to her (yes! albeit slow, she can talk to you on the phone.)

Life as leader

I am getting as much from life as I am putting into it. That's right! I only get what I give. If I give sadness, that's what I get. If I give hope that's what I get. If I take myself out of the game, that's what I get: I'm left out. That is a basic lesson in life. That is essential knowledge for a leader.

Jan is a leader in life. She is doing wonderfully. She was taking a drug to control seizures that produced many side effects: sleepiness, reduce language ability, nausea, irritability, etc. Last week her physician changed the medication and she is doing woderfully now. She even took hope when the physician told her that if the seizures do not recurr in a year, she would be free from all medication! Halleluja!

I was travelling for a week, when I came back this morning I was the one who was speechless, she was moving her right side almost freely and her speech was excellent.

I love my Jan wherever she is in her recovery, but this morning my heart filled with hope that she will regain even more functions just because her hope and belief are so strong. She is getting what she is putting in life. All the physicians that have seen Jan since her illness have repeated that the degree of recovery of functions depends mostly on the patient's determination to get well. Believe me, in her circumstances, I have not seen anyone as determined as Jan.

An hour after I arrived, she left for a three day camping with all the females from her family! She is able and expects everyone else to hold her able. Beginning now, I am holding her able as well. This is the end of treating her as a disabled person. Besides, she gets more support when people hold her able.

I know she is having a lot of fun right now.


Thursday, July 05, 2007

How Jan is overcoming her aneurysm

Jan had an aneurysm on February, 2006. The first prognosis was not good, but as time went by, a more optimistic picture emerged. Two lessons came from the many meetings with doctors and friends: first, no one knows how the brain really works or how it heals; second, that the healing is as unique as each individual is, that a big factor in the healing lays within the individual, in the determination to get well.

The following reflects these lessons.

Jan cannot find the words
-She can’t find them in her mouth-.
Jan is a painter without a canvas,
a musician without an instrument.
Jan can see the words
-she has them in her head-;
like a palette of a thousand colours,
endless scores of songs,
words to shape visions,
words to build belief
but Jan cannot find them now,
she is in a brawl with aphasia.

Jan’s world was born of words:
a universe painted with words
chiselled out of adjectives and nouns,
her life is a watercolour of verbs,
Jan was born a wordsmith
her purpose was to talk life,
to make words of truth
to make words of beauty
to make words of goodness.
Nowadays, life is at a standstill,
aphasia withholds her words.

In the most fundamental sense
Jan is a poet, Jan is a maker.
With broken words
She makes God present
She makes life urgent
She makes music essential
Jan is remaking her tools
the tools aphasia shattered
Jan will write new poems
Jan will paint new paintings
Jan will sing new songs
because her faith in God
and her love for words
are bigger than aphasia.


Monday, July 02, 2007

The strain of Aphasia

Communication between husband and wife is a challenge under normal circumstances. Communication with a spouse with Aphasia is a similar challenge, but multiplied dozens of times. Two major factors of danger and opportunity that Aphasia brings into the equation are the lack of words to convey clearly and effectively ideas; and the inflexibility of thought that accompanies the recovery from the brain injury tha caused the Aphasia.

We are strained to the max in our communication. She is frustrated that she is unable to communicate as effectively as before, I am frustrated because understanding her is more of an emotional battle than a linguistic process. We spend the normal level of energy communicating and then lots of emotional energy that we have to invest trying to disentangle emotional reactivity from concepts and ideas.

I suspect that Jan relies more in her limbic system to communicate than any other part of her brain. "Wearing her feelings on her sleeve" is another way of saying that emotion supercedes thought and words.

Was this always the case? I don't information from a long period of time before the aneurysm to be able to answer the question, but from anecdotal information, she seems to have been an "emotional" person.

At the same time, she worked very hard at raising her communication to a high level so she could live from what she calls "a place of integrity"; she participated in many courses and worked under supervision with a personal coach developing clarity, integrity, and truthfulness in all of her communications. She excelled at this, but there was a question of balancing integrity with compassion. She expected all to be at the same level she was. Nevertheless, truth without compassion can only produce conflict. Compassion without truth can only produce delusion. How can we communicate in truth and compassion at the same time? How can we confront people with the truth (of course the beholder's version) and produce peace?

In spite of the aphasia, she insist on telling things as she sees them (her truth), which is something to admire, but at the same time, she shows inflexibility and inability to take feedback. Our conversations lately are more verbal battlefields than enjoyable exchanges where we can know more about each other.

We are under tremendous pressure to find a balance and protect the relationship. She will have aphasia for a while, so we must change something, and the burden falls on me, to be able to have reasonable conversations. The alternatives are so bleak that we just have to continue reminding ourselves of our pledges to be there for each other...


Wednesday, June 20, 2007

Good Bye Teacher

After 25 years of teaching, last week Jan had to come to terms with the fact that Aphasia and teaching do not mix. After a rewarding and successful teaching career, last week she had to quit formally her job. This was the end of a another dream.

She cannot teach because the basic skills of a teacher of grades 7 and 8 are language and memory, two of the abilities Jan lost after the aneurysm.

So, what would do you do? You could go to a corner and pout and complain about the unfairness of life, be miserable and make life miserable for those around you; or you could look at the challenge in a different light, keep things in perspective and look, really look at what is God doing here.

Jan has taken a very deep journey into her soul during these sixteen months. She has walked in uncharted waters, she has held her fear in check and in spite of the pain and wordlessness she has to struggle with, she has understood the nature and the purpose of her aneurysm by taking a higher perspective. She says: "this is only a small part of what life is. I trust that God knows what he is doing". So instead of anger and despair in the face of the enourmous losses she has incurred, with all diginity, she opens her hands to let go of that which she held precious for so many years: being a teacher (in a classroom).

One by one she has buried many dreams. Perhaps not one as essential as this. But she has done it with dignitiy and with a thankful heart. No regrets. She received as much as she gave: love, dedication, effort, excelence. For her the students were like flowers that have to be tended to with patience and love, so they can bloom freely in their own time.

She doesn't know when and how much language she will recover. Anyone who knows Jan should also know that she expects to recover all. In this she continues to inspire, to set the bar a notch higher.

Accepting the reality for now meant to step aside, for now. If you know of effective ways to hope and pray, join her in her hope that one day she may be able to teach again.

The amazing Jan is grieving her losses, however, she was playing the piano and singing last night...


Call us for Jan's new email address if you wish to correspond with her. Sorry we can't post it here because of spammers.

Saturday, April 28, 2007


We have been living in boxes for the past three or so weeks in preparation for the move. It's been an exciting time (to say the least) complete with all the suspense and unexpected turns that one can think of. Thankfully, we are two days away and then the unpacking will take some time before we can get back to "normality". Word has gotten around about the move and the always ready to help friends have already called in to enlist. Thanks!

We will be moving on Monday, the weekend move didn't work out. But some will come to help get things ready and move some delicate things like plants, frames and the like. I get the impression that this is like party time for Jan. Most of her friends get the impression that she is specializing in moving (4 times in 24 months!)

Jan has been extraordinary in the process. She puts in long days selecting, throwing away, an packing what's left, in spite of the headaches she has for the last few weeks. The headaches seem to be related to the "loose" bones in her let side, which will be replaced with the operation.

She has been struggling with strong headaches. The family doctor was advised but only under pressure she proceeded with a referral to a neurologist to follow Jan's situation. The health system ("illness system" rather) only acts when there is an illness or a catastrophe, if the patients looks more or less OK, then it just becomes

Yesterday we went to the hospital for a CT scan in preparation for her surgery. The whole process took no more than 10 minutes from registration to the good-bye. It was so efficient that she didn't have time to complain.

The past few weeks have been rough in terms of emotional reactivity. Anything can trigger strong reactions; right after, she is left totally drained and dizzy. It is hard to witness and be part of these events. I too, feel drained and worry about the impact on her healing. Her personality seems to be magnified by the process, and communication is seriously affected by the aphasia, which makes things more difficult than the normal maneuvering through the days. I appreciate very deeply all the support from family and friends in these trying times.

Someone asked me about my outlook of these process, and I had to dig deep inside to answer that this is about character formation, which starts with keeping the promises I made to her at our wedding. If I told her that I would love her in any circumstances, then, I better start meaning what I say and saying what I mean. It is not easy on a day to day basis to remember what I pledged her, sometimes my feelings scream the opposite, but I have learned some time ago that love is more than a feeling, it is commitment, patience, hope and all the other things listed in a previous blog. In a crisis, after all the pain, frustration, doubt and half-cooked conclusions have subsided, there is a strong sense of purpose beyond our circumstances that keeps us going.

One day I will have more time to explaing this purpose, for now I have to go back to the boxes...


Saturday, April 14, 2007


Update on Surgery.

Last Wednesday Jan and I went for an appointment to the Plastic Surgeon. Initially we thought that the vist was going to be actually the surgery to "fix" the problem with Jan's bone flaps, which seem to have broken and be loose. The explanation we were given is that after four months of keeping them in a freezer at the hospital, when they put them back in, Jan's body didn't "recognize" the flaps and it began dissolving the bone flaps. The Plastic Surgeon confirmed that the bones bay have been already dead when they were re-inserted. So, now, she has to get some computarized prothesis in the next three or four months. Eventually, jan's hear will look normal, it is a matter of time.

We know many of you expected to find Jan recuperating from surgery this week, instead, she is around as always, speaking more and moving more somedays, and then struggling with aphasia and right neglect other days.

Thanks for your support and prayers for Jan. She (we) need them all.


Tuesday, April 03, 2007


Yes, we are moving again! Write down in your calendars April 28 and 29 as the "M" days, and find your "moving" attire to give us a hand. We need your help!

When Jan came out of the hospital, I found a new apartment close to the church and with access to a nice backyard. It is a basement suite, and being an urban rat I didn't even think for a minute that Jan would object. Well, shec ame with me when we found it and she agreed, but using her prerrogative as a woman to change her mind, she changed it once we had moved. She agreed to wait until the winter was gone to plan the next move, and here it is!

Finding a place in the 'hood has been quite a challenge, not because there are no options, but because Jan is "choosey". So, pray for guidance to find the right place, a place open to everyone, a place of good cheer.

Call us if you are coming. Thanks! Gracias! Merci!


Thursday, March 29, 2007

A portrait of Jan

A portrait of Jan:

One October night, four friends came to dine with us. One of them wrote this poignant portrait, three and a half months before the aneurysm)

"A woman who carries herself with grace and efficiency. Slim and strong. A brunette beauty with a classic bone structure. She would be a beauty in any era. She speaks in low, warm tones and is surprisingly authoritative without being domineering. Jan laughs and smiles easily, ready to see the fun, the humour, ready to celebrate. A brave adventurer, she's travelled and taken other bold risks. Fede, her beloved, a case in point. Oh, how she delights in him, admires him, trusts him. She herself inspires trust. Some people do, at first glance. She's one these. Immediately, it is seen that she's solid and sane. Her eyes are clear. She has nothing to hide.

Her keen curiosity has led her to a wide range of literature. There is something traditional about her -a wholesomeness associated with a past era, or a t least to a rural setting. She's clean and openhearted. Her kindness is inherent, so natural to her; it seems to be unthought of.

But make no mistake. This is a woman with backbone. She has a will, and as warm, kind and gracious as she is, she owns herself and can't be pushed around..."


The aneurysm took Jan's abilities with speech, mobility and memory for a while, but inside that battered body, I often find exactly the same Jan described in this portrait.


Monday, March 26, 2007

Changing gears

Dear friends

New and exciting changes are happening in our lives. Keep posted to know about them!

Jan continues to face challenges these days. As time goes on, it becomes clear what functions are restored and what functions may or may not come back. She has made progress but she still faces major challenges.

She has developed quite a lot of mobility, she is taking Yoga, she volunteers twice a week at the church office, she is taking a weekly workshop, and assisting in an Alpha course once a week. I addition, she is taking a computer course to use an assistive device (a talking computer!), and is beginning to take a speech therapy class. So her schedule is quite busy.

On the rehab side, she struggles with the anti-seizure medication which affects her speech and mobility and makes her drowsy. She experiences also problems with fatigue and a number of other cognitive and communication challenges (see list in last posting)

She reads her email ( and answers all the notes; drop her a note! She loves hearing from her friends, and now with this assistive device, she can do a bit more because it "talks" to the pc as well.

Keep in touch!


Sunday, March 18, 2007

List of potential problems

I was very moved yesterday when you filled a self-assessment of a list of possible problems after a traumatic brain injury, such as your aneurysm. I have attached below a copy of the list. It may help friends and family to provide a context when they see some of the problems with which you are struggling. Recovery from a brain injury is a long process that can be made longer without useful information.

A few weeks ago you told me that we both had an aneurysm. I agree!, and I would extend this statement to all the family and close friends. Although you are the only one that landed in the hospital, the impact of the aneurysm reaches all those who love you, all of us feel the loss, the pain, the desire for you to get well; all of us feel at a loss of words when we see you trying to find a word unsuccessfully; we feel powerless when you get tired and there is nothing we can do about it; so it helps to know what we may be dealing with, not so much to put a label on you, but to reframe our reactions and have more productive conversation and interactions with you. All of us have to learn to deal with the aneurysm.

I was moved by your reactions, because you cried when you marked most of the items in the list as problems you face right now. I realized that even though you were aware of them, you had not seen them together in a list. On the positive side, this list gives us a measure to gage your recovery.


Possible problems after a traumatic brain injury

* Balance and co-ordination
* Difficulties or inability to walk
* Weakness or difficulty moving arms and legs
* Abnormal muscle tone
* Changes in sensation (ie. areas of numbness and tingling or areas that are overly sensitive)
* Decreased energy and endurance
* Problems with fatigue
* Difficulties sleeping
* Changes in hearing, seeing, smelling and tasting
* Light and sound sensitivity, ringing in ears, dizziness, light-headed feeling
* Changes in appetite, either not hungry or very hungry
* Swallowing problems
* Chronic pain, including headaches
* Increased sensitivity to caffeine, alcohol and other drugs
* Possible seizure activity

* Difficulties speaking (forming words)
* Difficulties understanding words/conversation
Inability to write
* Problems reading and understanding what was read
* Unable to stay on topic
* Problems thinking of the right words
* Difficulties expressing ideas in a concise way

Cognitive (thinking)
* Disorientation to time, place or person
* Poor concentration, easily distracted, unable to stay on topic
* Memory problems
* Slowed thinking and slower to respond
* Difficulty with reasoning, reaching logical conclusions and judgment Mind gets stuck on one issue
* Difficulties keeping track of two or more things and following a sequence
* Problems planning, organizing, problem solving, making decisions and initiating tasks
* Needs direction and structure to accomplish tasks

Problems with pacing activities
* Acts on impulse
* Difficulty dealing with change
* Lack of awareness, insight into problems and/or lack of acceptance
* Lack of flexibility in thinking
* Concrete in thinking

* Irritable and easily frustrated
* More sensitive to stress
* Depression
* Lack of facial expression
* Emotional outbursts
* Emotional (crying for no apparent reason)
* Withdrawn from family and friends
* Poor coping skills
* Feeling of grief and loss
* Behaviour and social skills
* Hard to keep up in social situations
* May be inappropriate - emotionally, behaviourally and sexually
* Self-centred; childish behaviour
* Personality changes (i.e. no longer outgoing)
* Changes in difficulties with relationships, especially with family
* May be impulsive
* Compulsive talking

* Decrease or inability to do the following: self care tasks; household management tasks; drive a car; work or return to work; be involved in previous social activities or hobbies.

Source: The Ontario Brain Injury Association

Wednesday, March 07, 2007

Of time and friends

Dear Jan:

As the first anniversary of the "A" day came and went, we are finding out that time is our greatest challenge to face.

Time has this quality of softening the sharpness of pain to a point where it is almost a soft a sand, of mitigating the urgency that novelty has. Do you remember? the first few weeks after the "a" day, friends and relatives were really eager to see you, to know about you, to do something to express their feeling for you. As time went by, and knowing that you had survived, the visits dwindled, the phone became silent, the mailbox filled up with dust and snow. This happens everywhere to everyone. Time and the heavy demands we put on our limited days slowly normalizes your on-going battle with rehab look more like everyone else's battle to survive. Time has made your presence among us "normal" again.

The upside of this is that you are welcomed in almost every situation. Everyone makes concesions to accomodate the extra time it takes you to do things, to speak, or even just to move. Everyone suspend judgements when your behavior is a bit odd because of the communication disability or the fatige. All seem glad of receiving an opportunity to extend grace to you, to be considerate and sensitive. It always makes one feel good to be good to someone else.

The downside is that been seen as one more in the bunch, you do not receive any special attention, or the extra visit or the call that at the beginning used to be so important to the giver as well as to you, the receiver. Without the emergency factor, time just levels everyone in the appointment books.

And so, here you are, not being able yet to remember who has called you or wrote to you. Your memory has to be refreshed everyday to make calls and when you make them, you cut them short because that is all you can handle. Your emails are minimalist, because that is all you can write. And as time goes by, you try to fill your days by volunteering at the church office, at the rehab hospital in the area, by meeting on a regular basis with one of your most faithful friends, by going house hunting with me, by taking long walks in the neighbourhood by yourself. Your friends may have gotten busy, but you are certainly not waiting for them.

The Aneurysm slowed you down, but could not stop you. The cold cannot stop you, the distances cannot stop you, in spite of time, you go on making progress and expecting to get everything back... you were promised this much...

Everytime you see a friend you react as if it was the first time you saw them. So much joy. Seeing time in a slower motion as you do now, may be a blessing because you get to enjoy more the time spent with those you love. Really, time has just seasoned your friendships. So, in spite of the few and far between encounters you have with them, time in you hands is transformed into a glue that keeps you close to them.

I am glad for your optimism and your skill for keeping friends.


Friday, March 02, 2007

Does love have a limit?

Dear Jan:

While I am re-starting the blogging after a month, honestly, I enjoyed the vacation. I didn't know if I wanted to continue blogging, partly because I have no idea who reads this blog anymore and partly because I don't know how to convey the emotional and mental exhaustion I am feeling these days. But then this morning I reminded myself that one of the main reasons of this blog was the fact that it was a great help for me to write things out, this way I clarified thoughts and feelings and I had a chance to see facts in perspective. So, here I go again.

There's been huge progress in every area touched by the aneurysm. You move better your whole right side, your energy last a bit longer and your speech improves in spurts. Everyone who has seen you comments on these improvements. At the same time, you also take some steps back now and then.

This blog should stop right here. Everyone would be happy to know that you are going forward.

However, you say repeatedly that I have to say the truth. And the truth is that life is more complicated than it looks.

Some days everything seems clear and I can see that your convalescence is not permanent, that one day you will just come back to the functioning level you had before the aneurysm. You will be the bright woman with a clear speech and a sharp mind that captured my attention. You yourself repeat this vision when the doctors state that what you got back at the one year mark is as good as it gets. I remember how irate you were after the meeting with your neurosurgeon; you said, "Obviously, he doesn't know me". To be sure, in the last six months, you have made progress against all prognoses mostly based on your character. Tough as nails, you have refused to let anyone "box in" your hopes and continue the uphill battle to regain speech, reading, writing and movement functions. On days like these I just love you extravagantly.

Other days are very dark, full of pain and tears, of moaning when there are no more words to express the isolation, depression and sadness that Aphasia forces upon you. I say something and you hear something else, you say something and a minute later you change what you said, but can't remember the change and feel harassed if I point out the change to you. I feel like we are speaking to each other in languages we don't mutually understand. On days like this I wonder where reality ends and madness starts. On days like this, I feel like the most insensitive man on the planet, a little ogre that is more interested in defending himself than in listening carefully to you and giving you the time you need. In days like this you just put on your snowsuit and walk out. It is in days like this when you say that you would like to die and end all this pain, or just go home to your sister’s, your brother’s, your dad’s or your mom’s. And then, there is the realization that this is your home! That this suffering is part of our life for now! That any happines we may have in the future will only be complete because of what we are going through now.

So, I ask myself: is there a limit to how much you can love? Is there a limit to how far I will love? Does love have a limit or an end?

I think the apostle Paul already answer this question:

The Way of Love (1Corinthians 13)

If I speak with human eloquence and angelic ecstasy but don't love, I'm nothing but the creaking of a rusty gate. If I speak God's Word with power, revealing all his mysteries and making everything plain as day, and if I have faith that says to a mountain, "Jump," and it jumps, but I don't love, I'm nothing. If I give everything I own to the poor and even go to the stake to be burned as a martyr, but I don't love, I've gotten nowhere. So, no matter what I say, what I believe, and what I do, I'm bankrupt without love.

Love never gives up.
Love cares more for others than for self.
Love doesn't want what it doesn't have.
Love doesn't strut,
Doesn't have a swelled head,
Doesn't force itself on others,
Isn't always "me first,"
Doesn't fly off the handle,
Doesn't keep score of the sins of others,
Doesn't revel when others grovel,
Takes pleasure in the flowering of truth,
Puts up with anything,
Trusts God always,
Always looks for the best,
Never looks back,
But keeps going to the end.

Love never dies. Inspired speech will be over some day; praying in tongues will end; understanding will reach its limit. We know only a portion of the truth, and what we say about God is always incomplete. But when the Complete arrives, our incompletes will be cancelled.


Monday, February 05, 2007


Dear Jan:

Professional coaches say that a sure way of knowing how we are doing is by carrying out a 360 degree audit. This means, you have to evaluate your performance through your own eyes, the eyes of your supervisors, the eyes of those you supervise, and the eyes of those you serve. This is a view of yourself in a 360 degree perspective. I have to say that few come out of these exercises with flying colours.

You have been coming back to life in the past 360 days. And you are pssing with flying colours most expectations and prognosis.

Tuesday, January 02, 2007

Drop a line to Jan!

Happy New Year to each and everyone!

Would you drop a line to Jan next time you read this blog?
It will tell Jan that although she is not seen around often, you still think of her a lot.

If you wish to send her an email use her new address:


PS: Ah! don't foget to write your email or phone number -if they have changed- for her new address book.