FROM ANGELA AND TINA
Hi Everyone! My name is Angela and I am Jan's cousin. My sister Tina and I are planning the benefit dance for Jan.
DATE: November 4, 2006
PLACE: Orillia (Jan's Home Town)
Masonic Hall on James Street.
TIME: 7:00 P.M.
A buffet will be served at approximately 10:00 P.M.
There will be a silent auction, raffles, door prizes, games etc. Donations of items or services suitable for these fundraising event are appreciated .
The event is still weeks away so plan to attend. Let's really pull together and help Jan, it's up to us!
If you can donate any items please email me at bearhugr@rogers.com
See you there!
Angela
Wednesday, August 30, 2006
Monday, August 28, 2006
Friends
Dear Jan,
Someone said that "the only way we know we know we haven't failed on this side of the divide is when you make a list of your friends". By this measure, your life Jan, is a total success. Your life has touched so many people; through the years you have cultivated so many deep friendships; you have invested time and energy, and now in your time of need, many of your friends have been there for you. The satisfaction of been cared for like this has no equal.
It's splendid to see the freedom and familiarity you have with some of your friends. The other day while we were in Lindsay, you just walked into one of your friends' home without much protocol. I don't know if they were gracious because they know how Jan is, or maybe they have this friendship with you that goes beyond conventions, that embraces you like one of the family.
You express so much joy and are so moved when I read for you the supporting emails from your friends or the comments in the blog. I can close my eyes and imagine the happy interactions you had with these friends. It's so refreshing to your heart to hear from those who count you as their friend. Your satisfaction written all over your face is so contagious. One day, when you have your writing skills re-installed, you will be able to share with them the value of their notes and the value of their support and love.
You were very pleased to see the responses so far to the invitation to attend the benefit dance in Orillia that your cousin is organizing in November 4. One of your former students is planning to attend accompanied by her mother! I hope in this event you get a chance to see friends from the various cities where you have lived, the communities to which you belong, and the places where you have worked. I will not be surprised to see there people who do not know you, but who have heard about you through the blog or other common friends and love you anyways.
You are rich by the number of friends you have Jan. Without their help, we would not have been able to navigate through these troubled waters. As the Beatles said: "Oh, I get by with a little help from my friends".
Several friends have set time aside to come and visit you every week for an hour or so. It is a concrete commitment to walk through these days with you. They are teaching us that friendship is sacred and also to be worn everyday. "No one has greater love than He who is willing to give his life for his friends" said Jesus. They are giving of their precious time to be with you. I feel honoured by them and you feel valued.
May your friends know that their love is highly treasured by you.
-FC
Someone said that "the only way we know we know we haven't failed on this side of the divide is when you make a list of your friends". By this measure, your life Jan, is a total success. Your life has touched so many people; through the years you have cultivated so many deep friendships; you have invested time and energy, and now in your time of need, many of your friends have been there for you. The satisfaction of been cared for like this has no equal.
It's splendid to see the freedom and familiarity you have with some of your friends. The other day while we were in Lindsay, you just walked into one of your friends' home without much protocol. I don't know if they were gracious because they know how Jan is, or maybe they have this friendship with you that goes beyond conventions, that embraces you like one of the family.
You express so much joy and are so moved when I read for you the supporting emails from your friends or the comments in the blog. I can close my eyes and imagine the happy interactions you had with these friends. It's so refreshing to your heart to hear from those who count you as their friend. Your satisfaction written all over your face is so contagious. One day, when you have your writing skills re-installed, you will be able to share with them the value of their notes and the value of their support and love.
You were very pleased to see the responses so far to the invitation to attend the benefit dance in Orillia that your cousin is organizing in November 4. One of your former students is planning to attend accompanied by her mother! I hope in this event you get a chance to see friends from the various cities where you have lived, the communities to which you belong, and the places where you have worked. I will not be surprised to see there people who do not know you, but who have heard about you through the blog or other common friends and love you anyways.
You are rich by the number of friends you have Jan. Without their help, we would not have been able to navigate through these troubled waters. As the Beatles said: "Oh, I get by with a little help from my friends".
Several friends have set time aside to come and visit you every week for an hour or so. It is a concrete commitment to walk through these days with you. They are teaching us that friendship is sacred and also to be worn everyday. "No one has greater love than He who is willing to give his life for his friends" said Jesus. They are giving of their precious time to be with you. I feel honoured by them and you feel valued.
May your friends know that their love is highly treasured by you.
-FC
Saturday, August 26, 2006
Benefit Dance Update
FROM ANGELA AND TINA
Hi Everyone!
My name is Angela and I am Jan's cousin. My sister Tina and I are planning the benefit dance for Jan.
The Dance is being held in Orillia, Jan's Home Town, at the Masonic Hall on James Street. The dance will start at 7:00 P.M.
A buffet will be served at approximately 10:00 P.M.
There will be a silent auction, raffles, door prizes, games etc. I would really appreciate donations of items that would be good for these fundraising events.
The dance will be held on November 4, 2006. That is still weeks away so start saving your money now. Let's really pull together and help Jan, it's up to us! If you can donate any items please email me at bearhugr@rogers.com
See you there!
Angela
Hi Everyone!
My name is Angela and I am Jan's cousin. My sister Tina and I are planning the benefit dance for Jan.
The Dance is being held in Orillia, Jan's Home Town, at the Masonic Hall on James Street. The dance will start at 7:00 P.M.
A buffet will be served at approximately 10:00 P.M.
There will be a silent auction, raffles, door prizes, games etc. I would really appreciate donations of items that would be good for these fundraising events.
The dance will be held on November 4, 2006. That is still weeks away so start saving your money now. Let's really pull together and help Jan, it's up to us! If you can donate any items please email me at bearhugr@rogers.com
See you there!
Angela
Friday, August 25, 2006
Glyconutrients
Dear Jan
I don't know with all certainty how much of your short term memory is still in the making. In the big picture is not really important, because this gives you the chance to really start with a blank slate every day. No memories, no regrets, no sadness, no losses, just hope for what the day will bring. What many consider a handicap for you it is a strength. You are a living paradox, like the paradoxical nature of The Kingdom., Every morning I find you to be in extraordinary circumstances with extraordinary strength and full of hope. You are truly blessed.
Yesterday we went to Burlington, to a lecture from Dr. Alex on glyconutrients. This physician had an aneurysm at 54, at the peak of his career. Then, lived disabled with 20% less of his brain for about 12 years feeling sorry for himself and giving up all hope that medicine would be able help him get better. Somehow, he was introduced to glyconutrients and his life and functions improved to the point where now he is an active adult with a full agenda and the physical condition of a man half his age. He went on for about 90 minutes giving ample evidence of the next paradigm shift in medicine to be brought about when glycoscience is better understood and adopted by alopaths. He was inspiring and sincere. Really sounded like a Don Quixote standing against the windmills of the Medicare establishment which is more concerned with dealing with illness and its symptoms rather than addressing the roots of these illness.
At the end of the almost two hours lecture, you were tired but mentioned in the car that you were feeling really excited for being able to accomplish this feat. Not only you followed the whole lecture, but also felt invigorated and validated in your hopes for a total recovery. Dr. Alex was a definite proof that you could come back and he represented for you a concrete example that it can be done. I shared your enthusiasm and also felt satisfied with the clarification of your objectives. Yes, you know how far you can go and you will do anything within your power to get there. This is the decisive Jan everyone knows.
Dr. Alex said glyconutrients are the next breakthrough in medicine. And he may be right, but it is a solution not within the reach of those who need it most. The supplements alone can cost a small fortune every year and their effects are slow. Moreover, their use is suggested for life.
Anyway, I like your take on this: it is God who will restore you, in the process he may use glyconutrients to regenerate the brain cells missing.
Bless your enthusiasm and joy.
Fede
I don't know with all certainty how much of your short term memory is still in the making. In the big picture is not really important, because this gives you the chance to really start with a blank slate every day. No memories, no regrets, no sadness, no losses, just hope for what the day will bring. What many consider a handicap for you it is a strength. You are a living paradox, like the paradoxical nature of The Kingdom., Every morning I find you to be in extraordinary circumstances with extraordinary strength and full of hope. You are truly blessed.
Yesterday we went to Burlington, to a lecture from Dr. Alex on glyconutrients. This physician had an aneurysm at 54, at the peak of his career. Then, lived disabled with 20% less of his brain for about 12 years feeling sorry for himself and giving up all hope that medicine would be able help him get better. Somehow, he was introduced to glyconutrients and his life and functions improved to the point where now he is an active adult with a full agenda and the physical condition of a man half his age. He went on for about 90 minutes giving ample evidence of the next paradigm shift in medicine to be brought about when glycoscience is better understood and adopted by alopaths. He was inspiring and sincere. Really sounded like a Don Quixote standing against the windmills of the Medicare establishment which is more concerned with dealing with illness and its symptoms rather than addressing the roots of these illness.
At the end of the almost two hours lecture, you were tired but mentioned in the car that you were feeling really excited for being able to accomplish this feat. Not only you followed the whole lecture, but also felt invigorated and validated in your hopes for a total recovery. Dr. Alex was a definite proof that you could come back and he represented for you a concrete example that it can be done. I shared your enthusiasm and also felt satisfied with the clarification of your objectives. Yes, you know how far you can go and you will do anything within your power to get there. This is the decisive Jan everyone knows.
Dr. Alex said glyconutrients are the next breakthrough in medicine. And he may be right, but it is a solution not within the reach of those who need it most. The supplements alone can cost a small fortune every year and their effects are slow. Moreover, their use is suggested for life.
Anyway, I like your take on this: it is God who will restore you, in the process he may use glyconutrients to regenerate the brain cells missing.
Bless your enthusiasm and joy.
Fede
Wednesday, August 23, 2006
Benefit dance
BENEFIT DANCE IN SUPPORT OF JAN
Come and join us in the celebration of Jan's Birthday (Nov. 3) and in support of her long term rehab. She has progressed so much, but there is still a long road to go and she needs you. Come, join us to celebrate her survival to an aneurysm and encourage her in the marathon of her life to regain the functions affected.
When? Saturday, November 4, 2006
Time? 7PM
Place? Orillia (about 80 minutes North of Toronto)
Food: there will be a buffet at 10 PM
CARPOOL: If there is enough interest, we can organize a carpool (or van) leaving from the High Park area in Toronto.
Keep checking for more details in the upcoming blogs!
Come and join us in the celebration of Jan's Birthday (Nov. 3) and in support of her long term rehab. She has progressed so much, but there is still a long road to go and she needs you. Come, join us to celebrate her survival to an aneurysm and encourage her in the marathon of her life to regain the functions affected.
When? Saturday, November 4, 2006
Time? 7PM
Place? Orillia (about 80 minutes North of Toronto)
Food: there will be a buffet at 10 PM
CARPOOL: If there is enough interest, we can organize a carpool (or van) leaving from the High Park area in Toronto.
Keep checking for more details in the upcoming blogs!
The frontline
Dear Jan:
Your biggest battle these days is with carbamazepine. Because of the threat of seizures you had to restart your medication for the forseeable future. It sounds reasonable to take some medication to prevent greater risks. Then, why so much resistance?
I don't know the whole answer, but I realize that it is not so much the medication as the setback it dealt to your progress. Up until 10 days ago you were doing great. Your speech was better each week, your stamina was admirable and you were really working hard on that right side. Then, all this came crashing down in the last week when your energy level has been diminished considerably, when your speech fluency took a few steps back, and your body in general feel lousy and fatigue sets in quickly. As the days progress, you are regaining some ground, but it really is a battle.
I realized that you can cary out a conversation and sound very fluent for the untrained ear, but after participating in some of the speech therapy sessions, I realize that there are still some important gaps in your understanding and expressing. Most of us tend to be very forgiving and fill in the gaps when your sentences are incomplete; the therapists, on the other hand, stick to the goal of finding the correct words to express your ideas in a complete form. If you miss a word they will ask you to write it or to spell it and then pronounce it. I am the first culprit as I often find myself completing your sentences. I guess it is time to be more aware of the importance to help you re-write your brain dictionaries, instead of filling them with blanks.
Keep up the good work, we all feel inspired by your tenacity and courage in the frontline
Love,
Fede
Your biggest battle these days is with carbamazepine. Because of the threat of seizures you had to restart your medication for the forseeable future. It sounds reasonable to take some medication to prevent greater risks. Then, why so much resistance?
I don't know the whole answer, but I realize that it is not so much the medication as the setback it dealt to your progress. Up until 10 days ago you were doing great. Your speech was better each week, your stamina was admirable and you were really working hard on that right side. Then, all this came crashing down in the last week when your energy level has been diminished considerably, when your speech fluency took a few steps back, and your body in general feel lousy and fatigue sets in quickly. As the days progress, you are regaining some ground, but it really is a battle.
I realized that you can cary out a conversation and sound very fluent for the untrained ear, but after participating in some of the speech therapy sessions, I realize that there are still some important gaps in your understanding and expressing. Most of us tend to be very forgiving and fill in the gaps when your sentences are incomplete; the therapists, on the other hand, stick to the goal of finding the correct words to express your ideas in a complete form. If you miss a word they will ask you to write it or to spell it and then pronounce it. I am the first culprit as I often find myself completing your sentences. I guess it is time to be more aware of the importance to help you re-write your brain dictionaries, instead of filling them with blanks.
Keep up the good work, we all feel inspired by your tenacity and courage in the frontline
Love,
Fede
FUNDRAISER
Dear All:
Pencil this date in your calendars! This is the opportunity you were waiting for to help Jan and have fun while doing it. Angie (Jan's cousin) is organizing this exciting fundraising event.
BENEFIT DANCE IN SUPPORT OF JAN
Come and join us in the celebration of Jan's Birthday (Nov. 3) and in support of her long term rehab. She has progressed so much, but there is still a long road to go and she needs you. Come, join us to celebrate her survival to an aneurysm and encourage her in the marathon of her life to regain the functions affected.
When? Saturday, November 4, 2006
Time? TBD
Place? Orillia (about 80 minutes North of Toronto)
Cost? TBD
Raffle: The organizers are planning a raffle with valuable and interesting prices. Don't miss it!
Remember, the proceeds will go to support Jan's added costs of rehabilitation (in particular those not covered by medicare)
Yes! the invitation is for everyone from Oakville, Toronto, Lindsay, and other towns where Jan's friends live.
CARPOOL: There will be a van or a bus (depending on the numbers) departing from Runnymede United Church, for those who prefer to share the trip there and back.
More details will be announced. Please RSVP as soon as possible by sending an email to jwaltondecarrillo@yahoo.ca You may be contacted by phone at a date closer to the event to confirm your attendance.
Pencil this date in your calendars! This is the opportunity you were waiting for to help Jan and have fun while doing it. Angie (Jan's cousin) is organizing this exciting fundraising event.
BENEFIT DANCE IN SUPPORT OF JAN
Come and join us in the celebration of Jan's Birthday (Nov. 3) and in support of her long term rehab. She has progressed so much, but there is still a long road to go and she needs you. Come, join us to celebrate her survival to an aneurysm and encourage her in the marathon of her life to regain the functions affected.
When? Saturday, November 4, 2006
Time? TBD
Place? Orillia (about 80 minutes North of Toronto)
Cost? TBD
Raffle: The organizers are planning a raffle with valuable and interesting prices. Don't miss it!
Remember, the proceeds will go to support Jan's added costs of rehabilitation (in particular those not covered by medicare)
Yes! the invitation is for everyone from Oakville, Toronto, Lindsay, and other towns where Jan's friends live.
CARPOOL: There will be a van or a bus (depending on the numbers) departing from Runnymede United Church, for those who prefer to share the trip there and back.
More details will be announced. Please RSVP as soon as possible by sending an email to jwaltondecarrillo@yahoo.ca You may be contacted by phone at a date closer to the event to confirm your attendance.
Sunday, August 20, 2006
Thankfulness
Dear Jan:
Something the preacher said tonight rang a bell: "often those who appear to have the least to be thankful for are the ones with the most thankful hearts"
True, I am not thankful all the time for your circumstances, however, in a strange way these are the times when, if I consciously stop, and really listen to that quiet voice inside of me, I can hear the thanks to The Lord from the bottom of my heart. And I realize that I am experiencing the most profound peace in the most troubling circumstances. However, I can't take credit for this transformation. In the mornings, the first thing my head tells me everyday is to scream in protest, to refuse to accept the injustice, to fill in what sometimes feels like the silence from God, to protest for his absence. But soon thereafter, I calm down and remain still. The voice comes clear: "look, I make all things new"[...] "be still and know that I am God" It is then that I overflow with thankfulness for what we are experiencing and the way this is deepening our trust and friendship with the Lord.
That's it. I can't explain it anymore. It's just bubbling in here, like a river. This calm is beyond my understanding. and it is expressed in thankfulness for keeping us alive and close to his side.
Then, when I look at you, I feel you closer to my heart; a precious delicate lamp shining on my path. With your quiet voice and your slow movements you confirm that everything is as it should be.
FC
Something the preacher said tonight rang a bell: "often those who appear to have the least to be thankful for are the ones with the most thankful hearts"
True, I am not thankful all the time for your circumstances, however, in a strange way these are the times when, if I consciously stop, and really listen to that quiet voice inside of me, I can hear the thanks to The Lord from the bottom of my heart. And I realize that I am experiencing the most profound peace in the most troubling circumstances. However, I can't take credit for this transformation. In the mornings, the first thing my head tells me everyday is to scream in protest, to refuse to accept the injustice, to fill in what sometimes feels like the silence from God, to protest for his absence. But soon thereafter, I calm down and remain still. The voice comes clear: "look, I make all things new"[...] "be still and know that I am God" It is then that I overflow with thankfulness for what we are experiencing and the way this is deepening our trust and friendship with the Lord.
That's it. I can't explain it anymore. It's just bubbling in here, like a river. This calm is beyond my understanding. and it is expressed in thankfulness for keeping us alive and close to his side.
Then, when I look at you, I feel you closer to my heart; a precious delicate lamp shining on my path. With your quiet voice and your slow movements you confirm that everything is as it should be.
FC
Pearls
Dear Jan:
It was so moving to see you today putting your pearls on to go shopping.
You had a relaxed afternoon at the High Park, David an I are not the greatest musicians, but you enjoyed the singing anyway. Later we had a nice BBQ with home-made food. Great to see you using that right hand in the kitchen. To finish the day we saw a nice movie (The Emperors Club) that allowed you to give your comments on the subject of teachers and ethics.
There is a song that summarizes what I felt today:
"When the sun's shinning down on me
when the world's all as it should be
Blessed be your name [...]
On the road marked with suffering
though there's pain in the offering
Blessed be your name"
FC
It was so moving to see you today putting your pearls on to go shopping.
You had a relaxed afternoon at the High Park, David an I are not the greatest musicians, but you enjoyed the singing anyway. Later we had a nice BBQ with home-made food. Great to see you using that right hand in the kitchen. To finish the day we saw a nice movie (The Emperors Club) that allowed you to give your comments on the subject of teachers and ethics.
There is a song that summarizes what I felt today:
"When the sun's shinning down on me
when the world's all as it should be
Blessed be your name [...]
On the road marked with suffering
though there's pain in the offering
Blessed be your name"
FC
Friday, August 18, 2006
Slowed down
Day 187
Dear Jan,
The past two days have been a bio-chemical re-adjustment for you. The medication has way to slow you down so much in your physical activity and in your speech that is hard to get to do even half of what you were doing last week. It is unfair that after functioning fine for three weeks, now you have to take these steps back.
I hope your body can get used soon to the medication and that you regain the momentum you had in your rehablitation until last week.
===
I wonder if someone among our friends knows how to organize a fundraiser. We need help to organize a fundraiser for therapies not covered by OHIP at the end of September.
Those who read these blog and can help, please contact us.
-Fede
Dear Jan,
The past two days have been a bio-chemical re-adjustment for you. The medication has way to slow you down so much in your physical activity and in your speech that is hard to get to do even half of what you were doing last week. It is unfair that after functioning fine for three weeks, now you have to take these steps back.
I hope your body can get used soon to the medication and that you regain the momentum you had in your rehablitation until last week.
===
I wonder if someone among our friends knows how to organize a fundraiser. We need help to organize a fundraiser for therapies not covered by OHIP at the end of September.
Those who read these blog and can help, please contact us.
-Fede
Thursday, August 17, 2006
Back on track, so to speak
Dear Jan,
After the scare from Monday, you keep moving on, rebuilding what was lost. But the road is not without it setbacks. The promise was that He would be with you every step of the the trip, not that the trip would be without pain and sometimes doubt.
Yesterday you were on the way to the hospital. David S. was the volunteer driver; but you didn't make it. You re-started the medication that morning and it caused nausea and dizzines. When you came back home covered in vomit, I could read on your face the magnitude of your dissilusionment. You took a bath and slept for most of the day.
Today was more "normal" -if there is such a thing-, I drove you to your therapies and to a visit to the Doctor. You complained that it wasn't fair that you wold have to go back to taking this medication. He tried to comfort you by saying that it would be for 6 to 12 months and then, he would re-assess. The words maybe were limited in your argumentation, but your ideas were perfectly clear. A positive development was the start of PHYSIOTHERAPY. The young specialist was very keen in getting a sense of your physical abilities. She checked for balance and strength in your limbs and her conclusion was that you are in excellent shape. There is some pain in the right shoulder and some limitation in the rotation of your arm, other than that, you are progressing fine.
Back on track, or at least that's how it seems today.
Rejoice about Monday and Tuesday and today.
Tomorrow is a mystery we both await with expectation.
FC
After the scare from Monday, you keep moving on, rebuilding what was lost. But the road is not without it setbacks. The promise was that He would be with you every step of the the trip, not that the trip would be without pain and sometimes doubt.
Yesterday you were on the way to the hospital. David S. was the volunteer driver; but you didn't make it. You re-started the medication that morning and it caused nausea and dizzines. When you came back home covered in vomit, I could read on your face the magnitude of your dissilusionment. You took a bath and slept for most of the day.
Today was more "normal" -if there is such a thing-, I drove you to your therapies and to a visit to the Doctor. You complained that it wasn't fair that you wold have to go back to taking this medication. He tried to comfort you by saying that it would be for 6 to 12 months and then, he would re-assess. The words maybe were limited in your argumentation, but your ideas were perfectly clear. A positive development was the start of PHYSIOTHERAPY. The young specialist was very keen in getting a sense of your physical abilities. She checked for balance and strength in your limbs and her conclusion was that you are in excellent shape. There is some pain in the right shoulder and some limitation in the rotation of your arm, other than that, you are progressing fine.
Back on track, or at least that's how it seems today.
Rejoice about Monday and Tuesday and today.
Tomorrow is a mystery we both await with expectation.
FC
Tuesday, August 15, 2006
Surprised
Dear Jan
Last night, right after I finished posting the last blog, you arrived from your visit to Oakville. We talked a while and then we went to bed. As we were falling asleep, you turn to my side and began making strange noises and movements. It was dark, so I tought you were asking me for something. I turned the light on and then I realized you were having a seizure.
I felt as if someone would have knocked the wind out of me. Confused, I held you in my arms trying to keep your head from hitting the headboard. A sense of anger filled my chest as I thought what I could do. How much pain is enough? How much more grief does Jan have to take? Your body was rigid and trembling, your eyes were open but you were not seeing me; your pupils were dilated.
I gave you a medication and slowly the trembling diminished. I put some clothes on you and carried you to the car. Slowly we drove to St. Michael's by the lake. It was 11:47p.m.
At the emergency they were very helpfull when they saw that you were semi-unconscious. They moved you to a room called "resucitation", I don't know if it was because there were no other beds available. There, they connected you to several machines to monitor your vitals. About an hour later they took you to get a CT scan; the doctor came and examined you, then he decided to keep you for the night under observation.
I slept in two chairs for short periods of time. You were also in and out of sleep. It was 7:30 a.m. when they sent you home with indications that you will have to take the medication from which you were trying to be free. You cried out of frustration, we both were feeling defeated and tired.
The seizure came unexpectedly. We knew there was a possibility that you would have to stay in the medication for a few months. Now the prospects are that you will have to take it for life.
What to say? We lost this one. However, I am glad that there were no consequences from the seizure other than the suprise and pain, the fact that you will have to take this medication indefinitely, and being forced to spend the night at the hospital.
FC
Last night, right after I finished posting the last blog, you arrived from your visit to Oakville. We talked a while and then we went to bed. As we were falling asleep, you turn to my side and began making strange noises and movements. It was dark, so I tought you were asking me for something. I turned the light on and then I realized you were having a seizure.
I felt as if someone would have knocked the wind out of me. Confused, I held you in my arms trying to keep your head from hitting the headboard. A sense of anger filled my chest as I thought what I could do. How much pain is enough? How much more grief does Jan have to take? Your body was rigid and trembling, your eyes were open but you were not seeing me; your pupils were dilated.
I gave you a medication and slowly the trembling diminished. I put some clothes on you and carried you to the car. Slowly we drove to St. Michael's by the lake. It was 11:47p.m.
At the emergency they were very helpfull when they saw that you were semi-unconscious. They moved you to a room called "resucitation", I don't know if it was because there were no other beds available. There, they connected you to several machines to monitor your vitals. About an hour later they took you to get a CT scan; the doctor came and examined you, then he decided to keep you for the night under observation.
I slept in two chairs for short periods of time. You were also in and out of sleep. It was 7:30 a.m. when they sent you home with indications that you will have to take the medication from which you were trying to be free. You cried out of frustration, we both were feeling defeated and tired.
The seizure came unexpectedly. We knew there was a possibility that you would have to stay in the medication for a few months. Now the prospects are that you will have to take it for life.
What to say? We lost this one. However, I am glad that there were no consequences from the seizure other than the suprise and pain, the fact that you will have to take this medication indefinitely, and being forced to spend the night at the hospital.
FC
Monday, August 14, 2006
Six Months
Dear friends,
This is a glimpse on the most exciting and frightful six months of our lives.
Six months ago, one Friday afternoon Jan was trying on nail polish colours that would match her dress. She was getting ready for romantic evening, the Oakville church had organized a dinner and dance. It was going to be our first Valentines together. But it never happened. An aneurysm in Jan's brain bursted sending her to the hospital. That night, she was operated to clip the broken vessel. She was operated again two days latter to clear the hemorrhage and take out the damaged cells. The next morning, I still had in a plastic bag her cocktail dress and her fancy shoes. I was in the waiting area of the critical care unit where Jan laid in a coma. She didn't move, nor she could open her eyes or talk. To breath, she used a respirator -a computarized machine that did the breathing for her-. She was connected by dozens of wires to a computer that kept constantly checking her heartbeat, her blood pressure, and other vital signs as well as the pressure of the fluids in her cranial cavity. She spend two weeks in that unit until, she opened her eyes and began moving a little the left leg and arm. Occasionally, she grinned, partly in pain, and partly because she recognized the voices of those around her.
Then, one day, we celebrated because she was taken from the respirator. She was moved to the Intensive care unit where she spend two more weeks. The movement on her left side continued to increase; she also began pronouncing a few words hard to understand, she talked in a hushed voice. One day another patient in the unit got an infection and as a safety measure, all the visitors were forced to wear a gown, shoe covers, gloves and a mask. Jan made progress day by day. We celebrated that she could sit down on a special chair, it was about the end of the third week.
At the end of the fourth week she was moved to the general ward. She still had tubes through her nose into her bladder and an IV in her arm. To drink water, she used a little sponge on the tip of a stick to prevent her from choking with water. She constantly used her left leg to kick her blankets off. She could not go to the washroom by herself, which was a challenge for her sense of independence, in fact she was totally dependent on the staff to eat, wash herself or even to pass water or have a stool. On occasion, the nurses tied her to the bed frame because she would pull the IV and the feeding tube off. One day she pulled the catether from her bladder off, and was in pain for while. At week number six, she was aware of who she was and where she was. She became more aware of visitors and her conversation was more clear. Her energy allowed her to talk for about 30 minutes and then without any warning, she would just close her eyes and fall asleep. At about that time, I began taking her on trips to the cafeteria on a wheelchair. She would enjoy the outing for about 30 minutes and then she would just drop her head to the side and droop. She began walking with the aid of a walker. She would go to the bathroom in her room by herself. Everyone was pleased with her progress. By this time she had no tubes going into her body. For about a month she had been going home for the weekends. She could not walk up or down the stairs without help. She talked more and more every week. In one of those visits, she played the guitar; with her left hand she made the notes while I strung the chords with my right. It was quite a sight! Her stamina was increasing. She could participate in activities for a couple of hours. Still, she slept over 14 hours a day. Her head took a strange shape without the lateral bone flaps. The surgeon decided to keep them off until the swelling of the brain was under control. In spite of this, she never accepted to use a hat or to conceal the visible indentation. She decided that this was not her problem but the problem of those who felt uncomfortable with her looks. This was 100% Jan. On week seven, at the end of March, she was moved to the rehabilitation hospital.
This was the beginning of a hopefull stage. She was involved in speech therapy from the strart and later joined occupational and physiotherapy. The physical danger had been resolved, now the big question in everyone's minds was how much of her functions she would recover. In this stage, on Easter Friday, we went ot church. Everyone was at the same time surprised and happy to see her walking up to the front to take a pair of nails to a wooden cross. As Linda latter said, it was a whiff of Easter Sunday on Friday. Jan continued to improve in her walking, speech and energy. Now she could carry out lengthy conversations and walk a Kilometer. At this hospital Jan had more positive feedback and happy experiences while observing her own progress. As a survivor of ABI (acquired brain injury) she found herself battling with Aphasia and Apraxia -the inability to find words to attach to ideas and the difficulty of moving the muscles to pronounce correctly the words she could find. Physically, she arrived at this hopsital with limited movement in her right side. A "frozen" shoulder on the right made movement of the right arm more difficult. Slowly, reality sinked in and she realized that this was going to be a lengthy process in which the main challenge was going to be to have enough patience to overcome the frustration. During her stay in this hospital, Jan went back for a one day operation to get her lateral bone flaps back in. Her head looked round again. Her hair would grow back and cover the large scar that runs along the hair line from the middle of her head to the temple. She would continue now with the complex process of recovering her speech and mobility. She was discharged from this hospital at the end of May, exactly two months since her arrival. Almost sixteen weeks since the first operation, Jan was finally going home.
June and July were busy months. We moved from the house in the north of the city to an apartment closer to where our communities of support are. Packing moving, unpacking and there you have eight weeks gone. Our new place is cozy, maybe a bit smaller than what our belongings require. Jan saw this as a good opportunity to downsize and she has done it ruthlessly. She has taken the motto: all the memories that are worth keeping, are for the most part inside of your head. In the middle of August, six months after the operation, Jan can be awake now for 12 hours in a row, she will carry on a conversation for hours, she may take a short break now and then, but she is beggining to enjoy her friends again. She makes her own telephone calls, the words still get stuck and she will have to rephrase her idea to get her point out, but she will not quit. Her right arm is moving every week more and more. She said, she feels how the right hand "awakens". She needs to build strenegth but she is advancing. Last week, she took her bike and went for a ride. She has repeated this three other times, everytime a longer ride. Her concern is the limited vision in her right eye, she cannot see what is in the right field of vision, and is afraid of hitting or being hit by something from the right side. She can use the right hand to eat and has began writing. Reading is still a problem, as is following complex commands. A week ago she participated in the singing group at church, she didn't sang the actual words but kept humming to make a perfect harmony.
After six months, many things have changed inside and outside of Jan. Despite the odds against her, she has continued to rebuild her life and make the best of what she has. Her faith is steady. She believes this happened for a reason and even though she doesn know it now, her trust is in someone greater than the process, "in the big scope of things, she says, this is insignificant" , what counts is the character that we developed from this pain.
-Fede
This is a glimpse on the most exciting and frightful six months of our lives.
Six months ago, one Friday afternoon Jan was trying on nail polish colours that would match her dress. She was getting ready for romantic evening, the Oakville church had organized a dinner and dance. It was going to be our first Valentines together. But it never happened. An aneurysm in Jan's brain bursted sending her to the hospital. That night, she was operated to clip the broken vessel. She was operated again two days latter to clear the hemorrhage and take out the damaged cells. The next morning, I still had in a plastic bag her cocktail dress and her fancy shoes. I was in the waiting area of the critical care unit where Jan laid in a coma. She didn't move, nor she could open her eyes or talk. To breath, she used a respirator -a computarized machine that did the breathing for her-. She was connected by dozens of wires to a computer that kept constantly checking her heartbeat, her blood pressure, and other vital signs as well as the pressure of the fluids in her cranial cavity. She spend two weeks in that unit until, she opened her eyes and began moving a little the left leg and arm. Occasionally, she grinned, partly in pain, and partly because she recognized the voices of those around her.
Then, one day, we celebrated because she was taken from the respirator. She was moved to the Intensive care unit where she spend two more weeks. The movement on her left side continued to increase; she also began pronouncing a few words hard to understand, she talked in a hushed voice. One day another patient in the unit got an infection and as a safety measure, all the visitors were forced to wear a gown, shoe covers, gloves and a mask. Jan made progress day by day. We celebrated that she could sit down on a special chair, it was about the end of the third week.
At the end of the fourth week she was moved to the general ward. She still had tubes through her nose into her bladder and an IV in her arm. To drink water, she used a little sponge on the tip of a stick to prevent her from choking with water. She constantly used her left leg to kick her blankets off. She could not go to the washroom by herself, which was a challenge for her sense of independence, in fact she was totally dependent on the staff to eat, wash herself or even to pass water or have a stool. On occasion, the nurses tied her to the bed frame because she would pull the IV and the feeding tube off. One day she pulled the catether from her bladder off, and was in pain for while. At week number six, she was aware of who she was and where she was. She became more aware of visitors and her conversation was more clear. Her energy allowed her to talk for about 30 minutes and then without any warning, she would just close her eyes and fall asleep. At about that time, I began taking her on trips to the cafeteria on a wheelchair. She would enjoy the outing for about 30 minutes and then she would just drop her head to the side and droop. She began walking with the aid of a walker. She would go to the bathroom in her room by herself. Everyone was pleased with her progress. By this time she had no tubes going into her body. For about a month she had been going home for the weekends. She could not walk up or down the stairs without help. She talked more and more every week. In one of those visits, she played the guitar; with her left hand she made the notes while I strung the chords with my right. It was quite a sight! Her stamina was increasing. She could participate in activities for a couple of hours. Still, she slept over 14 hours a day. Her head took a strange shape without the lateral bone flaps. The surgeon decided to keep them off until the swelling of the brain was under control. In spite of this, she never accepted to use a hat or to conceal the visible indentation. She decided that this was not her problem but the problem of those who felt uncomfortable with her looks. This was 100% Jan. On week seven, at the end of March, she was moved to the rehabilitation hospital.
This was the beginning of a hopefull stage. She was involved in speech therapy from the strart and later joined occupational and physiotherapy. The physical danger had been resolved, now the big question in everyone's minds was how much of her functions she would recover. In this stage, on Easter Friday, we went ot church. Everyone was at the same time surprised and happy to see her walking up to the front to take a pair of nails to a wooden cross. As Linda latter said, it was a whiff of Easter Sunday on Friday. Jan continued to improve in her walking, speech and energy. Now she could carry out lengthy conversations and walk a Kilometer. At this hospital Jan had more positive feedback and happy experiences while observing her own progress. As a survivor of ABI (acquired brain injury) she found herself battling with Aphasia and Apraxia -the inability to find words to attach to ideas and the difficulty of moving the muscles to pronounce correctly the words she could find. Physically, she arrived at this hopsital with limited movement in her right side. A "frozen" shoulder on the right made movement of the right arm more difficult. Slowly, reality sinked in and she realized that this was going to be a lengthy process in which the main challenge was going to be to have enough patience to overcome the frustration. During her stay in this hospital, Jan went back for a one day operation to get her lateral bone flaps back in. Her head looked round again. Her hair would grow back and cover the large scar that runs along the hair line from the middle of her head to the temple. She would continue now with the complex process of recovering her speech and mobility. She was discharged from this hospital at the end of May, exactly two months since her arrival. Almost sixteen weeks since the first operation, Jan was finally going home.
June and July were busy months. We moved from the house in the north of the city to an apartment closer to where our communities of support are. Packing moving, unpacking and there you have eight weeks gone. Our new place is cozy, maybe a bit smaller than what our belongings require. Jan saw this as a good opportunity to downsize and she has done it ruthlessly. She has taken the motto: all the memories that are worth keeping, are for the most part inside of your head. In the middle of August, six months after the operation, Jan can be awake now for 12 hours in a row, she will carry on a conversation for hours, she may take a short break now and then, but she is beggining to enjoy her friends again. She makes her own telephone calls, the words still get stuck and she will have to rephrase her idea to get her point out, but she will not quit. Her right arm is moving every week more and more. She said, she feels how the right hand "awakens". She needs to build strenegth but she is advancing. Last week, she took her bike and went for a ride. She has repeated this three other times, everytime a longer ride. Her concern is the limited vision in her right eye, she cannot see what is in the right field of vision, and is afraid of hitting or being hit by something from the right side. She can use the right hand to eat and has began writing. Reading is still a problem, as is following complex commands. A week ago she participated in the singing group at church, she didn't sang the actual words but kept humming to make a perfect harmony.
After six months, many things have changed inside and outside of Jan. Despite the odds against her, she has continued to rebuild her life and make the best of what she has. Her faith is steady. She believes this happened for a reason and even though she doesn know it now, her trust is in someone greater than the process, "in the big scope of things, she says, this is insignificant" , what counts is the character that we developed from this pain.
-Fede
Sunday, August 13, 2006
Ramps
Dear Jan,
It is so easy to forget that you still need ramps to communicate; it's so easy to assume normality when talking to you, because some days you sound so clear.
The engine broke down this weekend and the communication was minimal. Last Thursday I went with you to your speech language therapy and was surpised to see that in some areas you have more problems than in others. When the therapist asked questions in long sentences with two commands you really ahd to work hard to find the answer, for example:
"if March comes before January, then write your surname on the line below; if March comes after January, then write your name on the line."
Before and after, more than and less than, added as conditionals to a simple command can really give you grief. I wonder if any of your friends know of any programs to practice these type of exercises using a computer.
Tough weeked cleaning and making minor repairs to the house in Lindsay. I will be glad when it sells.
-Fede
It is so easy to forget that you still need ramps to communicate; it's so easy to assume normality when talking to you, because some days you sound so clear.
The engine broke down this weekend and the communication was minimal. Last Thursday I went with you to your speech language therapy and was surpised to see that in some areas you have more problems than in others. When the therapist asked questions in long sentences with two commands you really ahd to work hard to find the answer, for example:
"if March comes before January, then write your surname on the line below; if March comes after January, then write your name on the line."
Before and after, more than and less than, added as conditionals to a simple command can really give you grief. I wonder if any of your friends know of any programs to practice these type of exercises using a computer.
Tough weeked cleaning and making minor repairs to the house in Lindsay. I will be glad when it sells.
-Fede
Wednesday, August 09, 2006
Speech Therapy
Dear Jan,
Today speech therapy was intense. I asked you to describe it for me. You said you had to match pictures to concepts and then tell a story about each one. You found this to be hard work but enjoyed it a lot. Your language is expanding, everyone notices it, so this type of therapy seems to be working with you. It seems there is a good connection between the SLT team and you. You yourself commented on the progress you are making.
Other highlights of the day were:
Your concentration is expanding, but sometimes one needs to repeat the idea twice for you to understand it. This made me of the importance of nor assuming that you understand 100% of what we say without checking with you if you got all the ideas.
Later in the day, you struggled with fatigue. Even though you can keep going for longer periods, your energy is depleted after five or six hours.
In the evening we watched "Pay it Forward" Your comments were very insightful. At times I could not understand all the words in the dialogue, you would then fill in and repeat all the words... amazing! You made a comment of how we continue to write modern parables to remind ourselves of the sacrificial nature of love and how it always results in some form of redemption. You said that little actions can change the world...
I took a little action before you went to sleep: I told you that I love you, that you are very precious to me; that you have brought to my life far more than what I could ever give you. Thinking that, maybe, I don't say it enough.
Living with you this past six months (tomorrow it will be six months...) has been an intensive course on the basics of life. Everyday brings something new. I have confirmed that I am in this to learn how to live a life with more freedom and love. I remember V. Frankl idea that our freedom is the space between any circumstance in our lives and our reactions to it. Today, with your quiet actions you taught me how to live free. From an outsider's point of view anyone could say that we are going through a dark portion of our lives. From your point of view, pain and all, we are walking right in the middle of the light.
You also have taught me to look beyond the obvious. Somehow, I have learned to see you beyond the limitations imposed on you for now, as a matter of fact, it is now that I can clearly see the core of who you are, the real basis of what you believe. As you say: “You got, what you got, when you got it”.
You live absolutely free of regrets. You don't define your circumstances from a victim's point of view. You are certain about who is in control. Jesus said: "you will experience for yourselves the truth and the truth will free you [...] God intends something gloriously grand here and is making the decisions that will bring it about" (Jn 8:32,50). You know this truth and walk in this light. I am learning to embrace as well the freedom that comes from living the truth.
Thanks Jan.
-Fede
Today speech therapy was intense. I asked you to describe it for me. You said you had to match pictures to concepts and then tell a story about each one. You found this to be hard work but enjoyed it a lot. Your language is expanding, everyone notices it, so this type of therapy seems to be working with you. It seems there is a good connection between the SLT team and you. You yourself commented on the progress you are making.
Other highlights of the day were:
Your concentration is expanding, but sometimes one needs to repeat the idea twice for you to understand it. This made me of the importance of nor assuming that you understand 100% of what we say without checking with you if you got all the ideas.
Later in the day, you struggled with fatigue. Even though you can keep going for longer periods, your energy is depleted after five or six hours.
In the evening we watched "Pay it Forward" Your comments were very insightful. At times I could not understand all the words in the dialogue, you would then fill in and repeat all the words... amazing! You made a comment of how we continue to write modern parables to remind ourselves of the sacrificial nature of love and how it always results in some form of redemption. You said that little actions can change the world...
I took a little action before you went to sleep: I told you that I love you, that you are very precious to me; that you have brought to my life far more than what I could ever give you. Thinking that, maybe, I don't say it enough.
Living with you this past six months (tomorrow it will be six months...) has been an intensive course on the basics of life. Everyday brings something new. I have confirmed that I am in this to learn how to live a life with more freedom and love. I remember V. Frankl idea that our freedom is the space between any circumstance in our lives and our reactions to it. Today, with your quiet actions you taught me how to live free. From an outsider's point of view anyone could say that we are going through a dark portion of our lives. From your point of view, pain and all, we are walking right in the middle of the light.
You also have taught me to look beyond the obvious. Somehow, I have learned to see you beyond the limitations imposed on you for now, as a matter of fact, it is now that I can clearly see the core of who you are, the real basis of what you believe. As you say: “You got, what you got, when you got it”.
You live absolutely free of regrets. You don't define your circumstances from a victim's point of view. You are certain about who is in control. Jesus said: "you will experience for yourselves the truth and the truth will free you [...] God intends something gloriously grand here and is making the decisions that will bring it about" (Jn 8:32,50). You know this truth and walk in this light. I am learning to embrace as well the freedom that comes from living the truth.
Thanks Jan.
-Fede
Tuesday, August 08, 2006
Breakthrough
SUNDAY
Dear Jan, another note for your memoirs when the re-installation of reading and writing is completed in your brain.
There have been 17 breakthroughs since your aneurysm on February 10. This one was really exciting because it just happened in a second. You were riding your bike today!
You will remember that Farah came to visit us on Sunday, August 6. She had come to take William for a few months, as we had agreed. At the very last minute, youd decided that he could stay with us. I am sure the cat was happy to stay, he seems to be OK with being the master of the house, if he had gone with Farah, he would have had to be a sidekick for Munchkin, a two year old cat about double his size.
In the afternoon, Farah and I wanted to go for a bike ride. We invited you to come along and sit in a bench at the park. Your reply was customary: "a bench? No way! I want my bycicle". So, I went reluctantly to get your bike, which has only one gear and the breaks are on the pedals. We went to the parking lot of the High School at the corner and there, unsteadily at first, you began circling the parking lot. I walked alongside just to make sure that you would remain on the bycicle, but I didn't need to do anything else that to watch you and cheer for this great breakthrough in your self-confidence. You never forgot how to ride a bike.
After a couple of loops, you asked us to go ahead. I thought you would stay in the parking lot, so Farah and I went for an hour ride along the lake. When we came back, I was surprised I couldn't find you at home nor I could see your bike in the backyard. I went walking to the corner, when I , saw you riding slowly with a big smile on your face. You told me that you had been around the neighbourhood looking for us the whole time!
Just like that. Today you decided that it was time to get on the bike and you did it. I saw determination; I saw how in spite of the fear you went on anyway to do what you learned many years ago; I saw the happines in your eyes after achieving this feat.
This is remarkable, considering that you have very little feeling in your right side. Your brain still neglects to remember that you have a right arm and a right leg. So, to see you riding the bike literally with only one side of you under your total control, was amazing.
Another breakthrough. Number 17, in your wonderful rehabilitation. As Ret and Linda Ruth mentioned in their comments: this is a matter of trust for now and one day we will see back and know that He was in control.
MONDAY
Today we went to High Park again for a bike ride. You were anxious because of the crowds and the traffic, but rode your bike there and back without any incident. You are an amazing woman with a wonderful combination of a soft heart and an iron will. I know I am in exactly the place and with the person I have to be. Knowing this brings a wonderful freedom and depth to our relationship. I am truly thankful for being part of this events.
There are still barriers to overcome and challenges to meet. Yet, I know by your smile today, that in due time, you will overcome them with God's help. There is so much to learn from your knowledge that you are the beloved, and from your living it day to day...
-Fede
Dear Jan, another note for your memoirs when the re-installation of reading and writing is completed in your brain.
There have been 17 breakthroughs since your aneurysm on February 10. This one was really exciting because it just happened in a second. You were riding your bike today!
You will remember that Farah came to visit us on Sunday, August 6. She had come to take William for a few months, as we had agreed. At the very last minute, youd decided that he could stay with us. I am sure the cat was happy to stay, he seems to be OK with being the master of the house, if he had gone with Farah, he would have had to be a sidekick for Munchkin, a two year old cat about double his size.
In the afternoon, Farah and I wanted to go for a bike ride. We invited you to come along and sit in a bench at the park. Your reply was customary: "a bench? No way! I want my bycicle". So, I went reluctantly to get your bike, which has only one gear and the breaks are on the pedals. We went to the parking lot of the High School at the corner and there, unsteadily at first, you began circling the parking lot. I walked alongside just to make sure that you would remain on the bycicle, but I didn't need to do anything else that to watch you and cheer for this great breakthrough in your self-confidence. You never forgot how to ride a bike.
After a couple of loops, you asked us to go ahead. I thought you would stay in the parking lot, so Farah and I went for an hour ride along the lake. When we came back, I was surprised I couldn't find you at home nor I could see your bike in the backyard. I went walking to the corner, when I , saw you riding slowly with a big smile on your face. You told me that you had been around the neighbourhood looking for us the whole time!
Just like that. Today you decided that it was time to get on the bike and you did it. I saw determination; I saw how in spite of the fear you went on anyway to do what you learned many years ago; I saw the happines in your eyes after achieving this feat.
This is remarkable, considering that you have very little feeling in your right side. Your brain still neglects to remember that you have a right arm and a right leg. So, to see you riding the bike literally with only one side of you under your total control, was amazing.
Another breakthrough. Number 17, in your wonderful rehabilitation. As Ret and Linda Ruth mentioned in their comments: this is a matter of trust for now and one day we will see back and know that He was in control.
MONDAY
Today we went to High Park again for a bike ride. You were anxious because of the crowds and the traffic, but rode your bike there and back without any incident. You are an amazing woman with a wonderful combination of a soft heart and an iron will. I know I am in exactly the place and with the person I have to be. Knowing this brings a wonderful freedom and depth to our relationship. I am truly thankful for being part of this events.
There are still barriers to overcome and challenges to meet. Yet, I know by your smile today, that in due time, you will overcome them with God's help. There is so much to learn from your knowledge that you are the beloved, and from your living it day to day...
-Fede
Friday, August 04, 2006
Wounded
Dearest Jan,
Everytime I think we are making progress, I have to brace myself, because, often you or I will slip into doubt, sadness or pain, or just plain depression. This is a dialectic path -opposite ideas engaging in the search for truth-. But, the truth is not found in the ideas themselves or in their resolution. The truth of our trusting and then doubting; rejoicing and then grieving; is external to us both, it is hidden in the hands of God, the very same hands on which our lives and their meaning are carved.
The verb "see" in Hebrew, is the same as "experience". I see His work in your body, how in the hidden parts of your brain, quietly He is reconstructing new paths, reconnecting ideas to words, writing new neuro-programs so your mouth expresses these words. Above all, I can see the changes in your personality and spirituality, although I can't really understand the extent of them. I see the effects of what you experience. I experience the new Jan, sometimes with glee, sometimes with gloom. Seeing your progress leads me to a new level of seeing or experiencing God. For this, I am grateful even in the middle of the pain I feel when I see you suffering.
However, we both are wounded.
The truth is that we have been streched to our limits beyond the breaking point. The truth is that we have received strength to persevere. The truth is that this tremendous challenge has made us grow. True, in a paradoxical way we are blessed. But all these truths do not diminish in the least the pain we feel constantly. It is like the "Ilizarov" device used to grow bones, that keep "breaking" the bone millimitre by millimitre, to force it to grow.
Yesterday you were grieving your losses: you can't write, you can't read, you can't talk as before. You were feeling that your life was going to be short.
I listened carefully, feeling the pain of every word. I tried in vain to comfort you.
You said: "What good is it to live like this? I'm not good here anymore!" But you also said: "I know that He's been right next to me all this time. Maybe He just wants me to go to His real world".
What could I say? No, please don't leave me. Surely, God doesn't want that!
Instead, I just put my hand on your good arm, and with sadness in my eyes, I remained silent by your side.
-Fede
Everytime I think we are making progress, I have to brace myself, because, often you or I will slip into doubt, sadness or pain, or just plain depression. This is a dialectic path -opposite ideas engaging in the search for truth-. But, the truth is not found in the ideas themselves or in their resolution. The truth of our trusting and then doubting; rejoicing and then grieving; is external to us both, it is hidden in the hands of God, the very same hands on which our lives and their meaning are carved.
The verb "see" in Hebrew, is the same as "experience". I see His work in your body, how in the hidden parts of your brain, quietly He is reconstructing new paths, reconnecting ideas to words, writing new neuro-programs so your mouth expresses these words. Above all, I can see the changes in your personality and spirituality, although I can't really understand the extent of them. I see the effects of what you experience. I experience the new Jan, sometimes with glee, sometimes with gloom. Seeing your progress leads me to a new level of seeing or experiencing God. For this, I am grateful even in the middle of the pain I feel when I see you suffering.
However, we both are wounded.
The truth is that we have been streched to our limits beyond the breaking point. The truth is that we have received strength to persevere. The truth is that this tremendous challenge has made us grow. True, in a paradoxical way we are blessed. But all these truths do not diminish in the least the pain we feel constantly. It is like the "Ilizarov" device used to grow bones, that keep "breaking" the bone millimitre by millimitre, to force it to grow.
Yesterday you were grieving your losses: you can't write, you can't read, you can't talk as before. You were feeling that your life was going to be short.
I listened carefully, feeling the pain of every word. I tried in vain to comfort you.
You said: "What good is it to live like this? I'm not good here anymore!" But you also said: "I know that He's been right next to me all this time. Maybe He just wants me to go to His real world".
What could I say? No, please don't leave me. Surely, God doesn't want that!
Instead, I just put my hand on your good arm, and with sadness in my eyes, I remained silent by your side.
-Fede
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