Pat Provost


smallory

It has been nearly six years since my stroke. It fades to a blurry memory. I can barely remember what it felt like to be fully able. I remember the stressful life I led. Always running to and from the office where I worked at a job that I was not always passionate about. I know now that returning to work after my stroke was a very unrealistic goal. I learned that all strokes are not alike. One stroke survivor cannot compare their recovery with that of another. To evaluate our progress based on the progress of another is completely unfair and unrealistic. My stroke occurred on Good Friday in 1997. I was 42 years old and trying to live my life all at once -- working full days and taking university courses at night. I also wanted to balance my life by getting more exercise. I wanted to have fun too. I chose a sport that I had great passion for when I was younger: equestrian riding. I am grateful to have done this when I had the ability.

 

I decided to take my lesson on Good Friday because my husband had to work that day instead of Easter Monday. In hindsight it was a lucky thing I went riding that day. At least I wasn't alone when the stroke occurred.

 

Like many of my friends who are stroke survivors, I was very surprised to have a stroke at such a young age. I had no apparent risk factors although my father had heart disease and died of cardiac arrest in 1995. I never smoked and had good blood pressure and cholesterol levels. I was not obese and I had no signs of diabetes. I was very health conscious and strove to live a healthy lifestyle as much as possible during the 1990's rat race.

 

My mother-in-law died of stroke only months before mine, yet I never understood what stroke was. It was something that happened to old people. I had my own problems with stress management, but this was typical in my place of employment. Twice, my body had given me warnings. About five years prior to my stroke I had two burnouts, which forced me to take a few months sick leave. But everyone at work lived under the same stressful conditions. Could stress have contributed to my risk for stroke? Later I learned that I have a type A personality. This may not have been a good match for the life I was leading. Genes play a large role in our health. My father had diabetes and three heart attacks. I also had a high level of homocysteines, which caused my blood to thicken when my stroke occurred. Later we found out that a congenital defect in an artery caused a blockage about the size of a toothpick. It could have happened years before. I was able bodied for over forty years. For that I am grateful.

 

Easter arrived early in 1997. Good Friday fell on March 28th. Mom was still in Florida. My husband Carl worked that day so I decided to take my Sunday riding lesson on Friday in order to be free for Easter celebrating. Spring was in the air. The snow had nearly melted and I felt like going jogging just before I left for my lesson. It seemed a good idea to warm up with a good brisk walk and jog around my neighborhood. I took a taxi to the stables just outside of town.

 

I was given a different horse than usual. He was not happy about being tacked up for a lesson. He did everything he could to prevent me from getting his bridle on his head. I think this horse had psychic abilities because he was not behaving as I had expected. About thirty minutes into the lesson I had a strange sensation, a sound in my head like a drill. My vision dimmed, my left side weakened and then when the horse bucked I fell off. I remember hearing the paramedics looking me over and my friends trying to revive me but I knew something was not good when they found I was paralyzed on one side. Right away they took me in the ambulance to hospital where I was asked all the standard questions to assist in the diagnosis. I had given the correct responses but they confirmed that it was over three hours since my stroke occurred.

 

I was told I was comatose, but I was very aware of family and friends trying to comfort me but the details are no longer clear. These memories are interrupted by images of a light in my eyes and nurses asking me to not bite the ventilator tube. I was highly medicated and unable to communicate well so I resorted to trying to write messages on my sister's hand. My right side worked fine but I only wanted to sleep. In fact, when I got a phone in my room often I would drift off to sleep during a conversation and leave the receiver off the hook.

 

I missed my husband terribly and was compelled to call him at all hours of the night just to talk. The medication was probably the cause of my silliness and I would frequently make the nursing staff laugh at my comments. I must have been in denial about my condition because I was very concerned about calling my employer to report my absence from work. An orderly informed me that my office would be closed on Easter Monday so I had nothing to worry about. I was still living with the same agenda as before my stroke. I wanted to call my riding teacher to cancel my lesson the next weekend in case I was not able to ride yet.

 

I seemed to be joking about everything until my doctor brought me back to reality. He asked me if I knew what happened and I said that I understood that I had a little stroke. This seemed to annoy him and he told me that it was NOT a little stroke. It was a Big Stroke and that I had a long road ahead of me and that I needed to begin physical therapy as soon as possible even if it meant doing it in my bed. This guy was really gentle in the ER but with this he made things very clear for my immediate future.

 

Soon I would meet my physical therapist, Josee, who met me in the PT room and helped me from my wheelchair to the exercise bed. I needed to learn how to pivot and transfer from my bed to a chair. After a few sessions I began to trust my weak leg to support me. I could actually put my full weight on the left side without collapsing. Along with PT I needed occupational therapy to learn how to cope with daily living activities. Up until then a nurse had been spoon-feeding me my meals because it was difficult for me to direct a spoon or fork into my mouth without losing the contents.

 

Before my stroke I showered everyday. After the third day I was told that a family member could assist me to have a bath. I was transported in a canvas hammock Free Willy style. My husband agreed to give me a hand with the bath. I didn't know that this would be my last bath sitting in a tub for a long time.

 

My occupational therapist, Nathalie, gave me a session to learn how to use a wheelchair. OT was less motivating and harder on my ego than PT. I felt that I was not performing well. I had poor control of the wheelchair and it embarrassed me. I also had some neuropsychological work to do. I had a significant left side neglect, which caused me to ignore my left side. People noticed that I would write only on the right half of a page of paper; I would also eat only from the right side of my plate.

 

Once I had improved to a level where my medical condition was no longer critical the hospital social worker suggested that I consider transferring to a hospital which could better help me recover as much functionality as possible. I was very enthusiastic in spite of the condescending comparison to Boot Camp by my neurologist. I was up for the challenge. There were no facilities of this kind close to home but the social worker applied on my behalf to a Rehab hospital in Montreal. Carl could visit me in the evenings on his way home from work. My Mom and sister could visit during the day. This was a big adventure. All I could think about was that after a stint in this place I would be cured and recovered to my old self. The sooner the better.

 

When I was admitted the rooms on the fifth floor where I would be staying had been freshly painted a lovely peach color. I felt better already. I arrived just in time for lunch. It was quite good compared to what was served in the acute care hospital. Later I met the nurse in charge of my case, a nursing assistant, the resident physician and a neurologist. They were part of my team who met once every two weeks to discuss my progress. Unfortunately I would never be invited to attend the meetings.

 

The following day I began with therapy evaluations. I had my first shower and my attention skills were tested. I heard comments on how I had some difficulties organizing myself and that sequences were also a problem. I was challenged to dress myself without help and it was pure torture to struggle into my clothes with only one arm functioning. I felt very discouraged at my performance. I felt as though I had no strategizing skills to figure out how to manage tasks effectively. I felt very sad.

 

The rehab hospital is where I learned that I needed to become more patient -- patient to get well, patient to see my friends and loved ones, and patient to have a life again. My first experience with a stroke support group was very difficult. Mom came with me. We learned about the stages of grief. We also learned about our disabilities. It was said that the stroke in the right brain could cause one to lose musical ability. This was extremely upsetting to me because I had studied music for most of my life and had been blessed with a very good ear. It was painful to imagine my life without music. Then I began to cry. Crying is a very normal part of stroke. I just could not talk about my stroke without tearing up. It seemed I was crying all the time until I was discharged.

 

After a month in rehab my therapists began to talk to me about going home on weekends. I needed to master specific skills before this would be practical. Our house has two stories so I needed to learn to climb stairs. Learning these skills made me feel encouraged because I perceived I was really getting better and would be living independently again. I enjoyed walking with a quad-cane. One day Carl stopped by while I was in Physical Therapy and I was thrilled to show him that I could now walk and climb up and down the stairs. I also had to learn how to get into a car.

 

The first weekend I came home I had company visiting and my mother wisely offered to accommodate my friend so that Carl and I could get used to all the challenges openly and frankly. We soon realized that wheelchairs are difficult to maneuver in a small house.

 

In my own home I was confident enough to dispense with wheels in favor of a quad cane. Carl was understandably tense because he worried about how he could protect me from falls. Our activities that weekend were limited but it worked out well. Future weekends challenged us with my fall in the bathroom and my fear that the nurses would notice the bruise on my shoulder and recommend that I not be allowed to come home. I learned by this experience how important it is for me to wear my brace on my paralyzed leg. I hate it but I comply.

 

Those weekends were stressful but they ended up allowing me an earlier discharge than expected. Government budget cuts probably helped make the discharge happen more than anything I did. It was summer now. The good weather would aid in my rehabilitation as I could walk safely outdoors. I was ecstatic.

 

There was only one glitch. I was not recovered completely. In my prior to stroke view you were supposed to be cured 100% when you were released from a hospital. The next months would be very emotional, as I continued my rehab as an outpatient.

 

I was reminded often that up to a year post-stroke improvement was possible. My arm was not improving very much and I began to grieve its loss of function. I could no longer sit at the piano and spin out a tune. I tried to compromise with pieces for the right hand only but it just didn't fly. I resented that the therapists were more focused on my cognitive difficulties and practically no time was spent on treating my arm and hand. I would spend about six more months as an outpatient at the Phase 2 level after which I became discouraged and wanted my life back. I needed to find purpose in life especially since I would not be returning to work.

 

My therapists agreed that I would be hitting the dreaded plateau soon so they told me about Phase 3. In this phase one learns to return to the outside world again and learn to live independently. To maximize my rehab at this phase I would be referred to a Rehabilitation Center for OT and Neurophysiology. I was assigned to Nancy, a very compassionate Occupational Therapist. She treated me with such respect that in spite of my frequent tears I actually had some fun learning how to operate in a kitchen again and make my bed. She also suggested that I join an art group to develop my creativity. What a concept! God was opening a window after he closed a door.

 

The art teacher, Micheline, encouraged me constantly and when the traveling became difficult I found an art teacher in my town. I have been painting ever since.

 

It was only in Phase 3 that my depression was addressed. Depression is a frequent and normal part of stroke. Mine kicked in when I began to realize that my recovery was plateauing. I was fortunate to find a psychotherapist who was familiar with stroke survivors and the challenges they face. I learned how to plan and prioritize my activities and to understand perceptions others have about my situation. Lifelong lessons indeed.

 

In phase 3 one can take a drivers test again in an adapted car. I did not pass. I don't mind because I have found a dynamic service in our town where volunteers drive me when I need transportation to doctor's appointments. We also have an adapted transportation service so I am able to come and go without depending too much on others who have been wonderful about providing transport.

 

I had a visit from a nurse who represented my insurance company. I will be forever grateful for her advice. Up until her visit I was expecting to return to work. I suppose that the grief process needed to finish before I would accept an early retirement. She told me that some of my recovery was very good and that some of it was less encouraging. She told me that I would be advised to take a long-term disability from work and spend my energy focusing on maximizing my quality of life.

 

I was fortunate to have this type of insurance. I would never be happy working as I had before my stroke. Because of my disabilities I would never be on an even playing field. Just commuting to work would be a major problem. If ever I was to have another stroke I may have lost option and the benefit of long-term disability. This was just not worth the risk. I decided I would re-invent myself. I am a work in progress.

 

I found myself a new career as a volunteer for The Stroke Network. I have learned more about business there than I did after many years at my old job. I am out of the stressful corporate culture. I can work at my own pace. I can pursue my interests and run our home on my terms. My husband has been a wonderful support during my recovery, as have all the members of our family.

 

In summer I love to garden. There are ways to make gardening possible for people with limited mobility so I have embraced container gardening. With the help of my brother-in-law we added a large deck to the back of our home. It allows me to spend time outdoors in the summer. I have also learned how to cook again. So has my husband. This is where pacing, planning and prioritizing come in to play.

 

Basically, life after stroke is creating a lifestyle that is possible and realistic for the way one's abilities and interests drive them. I miss the spontaneity I used to enjoy but most things I miss can be realized with planning. We must never give up. I chose to take joy.

 

I have come to believe that in order to be happy one has to live one's best life. To me this means no longer expecting perfection but instead living on my own terms and squeezing as much living into whatever part of my body is working. I have to remember that my stroke was a personal tragedy but also that it could have been much worse. I did not lose everything. Had I not suffered the stroke I would never have known how much I am loved. I have made many good friends from Internet stroke support. My work at the Stroke Network has made me feel appreciated and worthy of the respect that I need.

 

I never give up hope of a full recovery but I have learned how to live with my disabilities. I am able to live with what I have in this moment. It can only get better.

 

 

From the category:

Bios

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Thank you for sharing your story.It is very meaningful to me. I am going to start thinking of myself as "a work in progress." I like that idea, as I continue to struggle with acceptance of the new "me."

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