College Begins

It is hard to believe I have already completed 3 weeks of classes. I have already handed in major assignments and next week one of the classes has its final exam! We will be doing up to 3 classes at a time in a rather intense, accelerated pace --then get the mark and move on to different credit classes with the same teachers. Yes, it is being wonderful and yes, this is difficult!!!

 I think I should start by introducing my new cast of characters.

 There are 15 people in our class and we make quite the demographic picture, There are two men and 13 women, 2 of us are in our fifties , a few in their forties and thirties and  7 young women that are about 19 to 25. There are 4 that are living in the rural area outside of the city and have a long drive in every morning. There are several other people besides me with learning or health challenges.  We are all starting to form a group and learning to work with each other. How appropriate that the first assignment for the writing class is about group formation.

 We have 3 instructors.
T is an intense, jovial guy that has years and years in the Therapeutic Recreation field and has developed innovative programs and policies for personal care homes. I believe he holds degrees in Recreation, Kinesiology and also in Gerontology.
J., who is a lovely, knowledgeable woman  is very experienced in community based care.  She has a very warm approachable style coupled with a much more academic teaching approach than the other two instructors.
The last teacher, B., is the one I had last year when I took that course in Interpersonal Communication in order to prove that I really can do this. He comes from a background with law enforcement and has been a college instructor for about 30 years.  His classes in writing, interpersonal skills and computer skills are considered fundamental and he  teaches the same classes to many other social based programs throughout the college.


I want to keep this blog going but since I have so much writing with school I think I will try to write shorter but more frequent posts. I am learning a lot of interesting information that I would love to share and I am having lots of new experiences and meeting new challenges.


I look forward to telling you all about my new adventures.

Closing Doors and Opening Windows

Open Window, Etretat

by Henri Matisse

 

When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us.

Alexander Graham Bell

 

The staff of the college program I am entering, the disability advisor and my job coach have all stressed that I need to let go of my different activities for this coming year. I need to focus on school. I know that college is going to use up most of my energy and that spare time will become a thing of the past.

You know what? It is hard to let go of my activities and social life.  I keep trying to negotiate a way that I can keep doing all the things I have been doing. Moving forward to new experiences means I have to leave past activities behind, at least for a while.

Yesterday I called my guitar teacher and told him I was quitting for now and then I cried. I have put a lot of time into getting that darn thing to sound half decent and I was just started to feel like I was making music instead of doing finger and hand therapy.

Volunteering at the hospital is another hard one to give up. The volunteer coordinator sent me the mailing of the recreation activities they need help with for September and I really want to volunteer with  most of them  but I won't be free. I realized with a smile that my reaction is a good thing. It probably means this Therapeutic Recreation program is a good choice for me.

Girl Guides? Actually this one feels okay. I will maintain my membership, and I will still attend the occasional event with girls and hopefully be a bit of a mentor for the younger leaders in my group. I will kind of take on a Grandma role. I will come to the enrollment and take pictures, I will show up for a couple of events over the year.  Guiding has a Trefoil Group for older leaders to meet for fun activities on a monthly basis and I have participated in that group for a couple of years. I already had to send my regrets regarding attending  a day in the country with the group that will occur on my first day of classes.  I am confident that I have the support of this group of women who have devoted years with a recreation and learning program for girls and young women. They understand about the value of the training program I am about to start.

On Wednesday I chaired my last meeting of the Peer Support Group that I have been involved with over the past several years. I am passing the group on to a couple of wonderful people who have been part of the group and I know that things will go even better with their fresh ideas, I am sorry to be moving away from Stroke Recovery Association of Manitoba but that feels right too. I will still show up when I can and I will keep in touch  with my friends but it won't be quite the same. I talked to the organization's Administrator, Russ, about what a home away from home the organization has been for me. He said that one part of the organization's official objectives is  "To assist the Stroke Survivor to again become a participating member of society through mental stimulation, self-help, and socialization" .  He said that is exactly what I was doing.
Moving forward is what is supposed to happen.

New Chapter

 

I have some very good news. I am starting college in just a couple of weeks! 

Two years ago I was accepted into a government program that helps people with disabilities get back to work and I have tried very hard to meet all the challenges involved in the program. I almost gave up a few different times in sheer frustration but here we are at the next phase and I am still hanging in there.

I am not able to return to the type of work I used to do, so my vocational team and I knew that we would have to explore new options.  I took a computer class, I did a week of vocational testing and presented doctor reports. We worked on creating a new resume, we interviewed several people about what their careers were like and we came up with a short list of options for me. I was particularly interested in Recreational Therapy.

My counselor told me that it was possible that I would qualify for retraining. The local college offers a nine month certificate program, so we met with the disability counselor for the college and discussed my options and supports I would have if I went back to school. Last January I took a night school course that is a credit for the program. I found the course difficult, but it showed some of the problems that I will need to address in the future. I put in an enormous amount of work and got a great mark so that was proof that I can indeed handle school in spite of my cognitive issues! The vocational program also arranged for me to volunteer for six weeks at a hospital based personal care home helping with the Recreational Therapy program and also with the Spiritual Care program. I needed to prove to myself and to the government that I have some attitude for that kind of work and I also needed to be assured that I could find the endurance to work half days. 

I choose to continue volunteering for  the hospital past my required commitment and I have now done over a hundred hours of service. I am loving it more and more all the time and feel confident that I will enjoy that kind of work and be good at it.

Last month I got notification that I was accepted into the college program and that I would be fully funded. Yippeeeeee!

I will start the full time program in Therapeutic Recreation for Older Adults in three weeks. It will be seven  months of  in-class training followed by two months of work placements in the community.

I am excited and anxious about going to college. I still have a long way to go before I have a paying job ... but I think that I am up to the challenge with support from the counselors, teachers and especially my family and friends.

Wish me luck!

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

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.

Thank-you!

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.

Volunteer!

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.
.