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.
FC
Thursday, March 29, 2007
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 (janitawalton@gmail.com) 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!
Fc
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 (janitawalton@gmail.com) 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!
Fc
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.
Fede
------------
Possible problems after a traumatic brain injury
Physical
* 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
Communication
* 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
Emotional
* 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
Functional
* 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
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.
Fede
------------
Possible problems after a traumatic brain injury
Physical
* 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
Communication
* 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
Emotional
* 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
Functional
* 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.
FC
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.
FC
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.
-Fede
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.
-Fede
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