Wednesday, May 29, 2013

Sorting Papers

I am sorting through recipes, scraps of paper with addresses, magazine articles and greeting cards and a lot of notes that were written to jog my faulty short term memory. During the first couple of years after I got sick I  picked up every health care pamphlet and every more or less inspirational message I could find.

With my wavering cognitive abilities at the time I had trouble determining what to keep and what to throw out so I kept a lot of boxes and zip lock bags full of random items. I did not know who or what to believe in as I experienced the uncertainty of my illness. I did find a lot of comfort in my religious beliefs.

Today I found a little scrap of brown paper, torn from the corner of a fast food bag, where I had written the words:
"Kyrie Eleison- Down the road that I must travel".

I have no recollection of writing this little note to myself but it still resonates very strongly with me. Life can be a pretty hard road with a lot of uncertainty and fear but here are lots of wonderful joyous moments too. Kyrie eleison... means Lord have Mercy and is part of the church services I have attended since childhood.

The song I will have remembered these words from  is Kyrie
The lyrics are by John Lang and the music by Richard Page and Steve George and were performed by Mr Mister.

Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night

I also especially like the lyrics-- my heart is old, it holds my memories. These boxes of papers are not going to fill in my confused memories from that period of my life. The things that are important to know are already held within my heart.

The wind blows hard against this mountain side,
across the sea into my soul
It reaches into where I cannot hide,
setting my feet upon the road

My heart is old, it holds my memories,
my body burns a gem like flame
Somewhere between the soul and soft machine,
is where I find myself again

Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I'm going will you follow
Kyrie eleison, on a highway in the light

When I was young I thought of growing old,
of what my life would mean to me
Would I have followed down my chosen road,
or only wished what I could be

Sunday, May 19, 2013

Friends and Acqaintances

Recently I was walking with a new friend when we come across one of her old friends. Her friend is suffering from Alzheimer Disease. The lady lit up and stretched her arms out to my friend, wanting a hug but the lady did not know my friend's name and did not remember that they had raised their kids together. She did know that it was someone she could trust. Once we walked on and were out of sight, my friend turned toward me and started sobbing in my arms. The person who was her old beloved friend and confidant is gone.  We talked later and she told me how she was the only one now that carried the memories that the two of them once shared. She told me that her friend was the person who always knew how to solve problems and was the one everyone would turn to and she also said that if something like this can happen to a bright woman like her friend, it can happen to anyone.

I have been giving this experience a lot of thought.  I am not sure that I have truly given enough consideration to the impact a life changing illness can have on the  survivor's friends.

One of the topics that comes up regularly at my Stroke Recovery groups is how social relations have been affected by stroke.  After a stroke a person experience so many changes that in many ways he, or she, is not the person they once were. Even someone who has a full recovery will have experienced a trauma that leaves him changed forever. He will never again feel quite so safe and invincible - he becomes aware of his own mortality.

If  you have physical and cognitive issues you need to learn how to negotiate basic life skills  in your home, neighbour hood and world once again. These changes affect your social life. Can you still be friends with the people you worked with if you no longer go to work? How about your your ability to enjoy the companionship of people with whom you shared sport activities?  If you have some cognitive issues, or are unable to talk fluently, how many of your friends are going to want to chat on the phone with you?  Limited energy reserves make even simple tasks exhausting so how can you find the energy to go out with a friend for coffee? Perhaps you will be embarrassed when you do go out if you need assistance to use a bathroom. What if you need help cutting your food? What will your friends think if you look different now?

Many survivors  find themselves leading lives where their outings revolve around doctors visits and rehab sessions. They become increasingly isolated in their own homes and their social circles becomes smaller and smaller. Isolation comes with increase risk of depression and poorer life choices that can affect their physical health even further, never mind the quality of life.

I  lost some people from my life over the past few years. A few friends and acquaintances did not have hope that I would have any real recovery. They more or less wrote me off and got on with their own lives.  I have spent a long time thinking that I had learned who my real friends were but perhaps what I was seeing was not their lack of interest in me. Maybe what I was witnessing was their own fear and vulnerability and inability to cope with the changes in me. Perhaps they were seeing, reflected in me, their own mortality. Maybe I am the one who needs to learn to be more compassionate.

photo source
I have been blessed to have had my family and several friends stand by me through the past 5 years.  I am fortunate to have also made so many terrific new friends online and in my local community.

I can't begin to express my gratitude for all the wonderful people that are in my life.


Sunday, May 12, 2013

Mothers Day Five Years Ago .. Part 1

Five years ago on Mother's Day I was in the hospital having trouble breathing. ... That was the beginning.

I thought I was having an asthma attack, not uncommon for me, but the inhalers did nothing. I stalled around for at least two days before I went to my doctor for a refill on my asthma prescriptions and he was about to send me on my way, saying he did not think I had pneumonia when he asked if my leg was swollen and I said yes. I was told to get to the nearest hospital so I got in my car and drove to the hospital. (stupid choice in not getting a cab or asking for a ride). I gave my husband a quick call and told him don’t come, just my asthma was out of control again. They had a long waiting list but did not let me leave the nurses desk once they checked my blood pressure.. I waited for several hours as my breathing got worse and worse with the nurses assuming I was still having asthma issues. Once the doctor saw me all hell broke loose. A quick X-Ray and the doctor told me that the fact that my blood pressure was extremely different from one side to the other and my leg was now very swollen was a bad sign. They called my husband, loaded me in an ambulance to go to a critical care hospital and by that time things were getting pretty fuzzy. I heard the nurse tell the ambulance driver to hurry, she was not sure I was going to make it.

I was found to have had a pulmonary embolism - 5 blood clots in my left lung. They started me on a blood thinner and worked on keeping me stable. One of the things that they found was that my hemoglobin was dangerously low, related to having very heavy periods.
The third day was Mother's Day and I wanted to go home and be with my family. It was decided that they would give me blood transfusions and send me home but I needed to come back to the hospital every morning for a couple of weeks to get heparin injections and to be monitored.

The question about why my periods were so bad was still not answered so we went home with a warning that if I started bleeding very heavily with my next period the anticoagulants made it risky so we should get to the hospital as soon as possible.

I was just happy that I was at home with my family on Mother's Day.

Saturday, May 4, 2013


I have been volunteering .... A LOT! I have always been a volunteer with a variety of organizations but this was something else!

I have continued to work in the direction of getting a job someday and part of the process has involved investigating a number of different fields. I have been leaning very strongly in the direction of some kind of recreation  related job and it was recommended that I get some real life work experience through volunteering. Partly this was to prove that I really do like that kind of work, that I really can do the job and most difficult was to prove that I have the stamina to work a half day job. I was also trying to prove to myself, and my employment support team that I would be able to go to college full time next year for a certificate program.

The Hospital's Thank-you pin for Volunteer Appreciation Week

We had a really hard time finding somewhere that would let me work the number of required hours per week. To best qualify for financial assistance they wanted me to work for about 15 hours each week for a period of at least 4 weeks. Most places would have been happy to give me about 3 hours but not that many!  Eventually the decision was made that I could work at two different places and we would add up the hours.

My Employment Development Specialist  and I met with the director of the Stroke Recovery Association of Manitoba where I have been an active member over the past several years. We agreed  I would spend time volunteering in general ways and also to chair our upcoming Wheel and Walk fundraiser.

Next we met with the Volunteer Coordinator of the hospital where I received most of my therapy.
After an interview process I began volunteering in the nursing home that is part of the hospital complex. I have been helping to transport residents to programs and assisting the recreation directors with a variety of events ranging from Spiritual Care activities in the chapel to crafts, music therapy sessions, movie night and even baking cookies with some lovely seniors.

All of this ... while desperately trying to balance my normal family, and my normal volunteer commitments. The rest of the time I wanted (well maybe needed) to be a couch potato.

I did it. The volunteering was very worthwhile, very encouraging, but also challenging and exhausting. I found that a lot of the things I worried about were not issues at all, but helping with adapted curling proved to be a rather humbling experience that pointed out my limitations. [note to self-- NO more curling- adapted or otherwise]

My required time as a volunteer with these organizations is now up. I had an appointment a few days ago with the hospital volunteer coordinator and we discussed my continuance as a volunteer at the hospital.  I left with dates that I will be volunteering for the rest of May. Stroke Recovery's annual Wheel and Walk fundraiser takes place in June so I still have a lot of lot of volunteer work ahead of me.

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