Years ago, I chaired a Canadian Human Resource and Development Committee whose mandate was to try and figure out how to make lifestyles easier for those with disabilities. I always felt a sense of responsibility for the fact that we never seemed to make much progress. In my previous life I had a significant amount of experience working with people who had disabilities but now that I am myself challenged I am quickly learning new things every day.
The purpose of this narrative is that I hope my life experiences can help someone in a similar situation, or, who sadly might find themselves in the same position in the future. In order to do this I would like to share a little bit about myself and how I became disabled.
I am outgoing, curious, a “people person”, and currently live at the RK MacDonald Nursing Home. I am happily married and my husband and I raised two wonderful children. My current hobbies are reading, medical researching on the computer, playing Scrabble online, and watching medical and veterinary shows on television. Before my stroke my favourite hobby was spending time with my flowers in the garden. I loved gardening and people walking down our street would often stop and ask for a garden tour.
I worked at St. Francis Xavier University in the Continuing and Distance Education Program. I love
d my job, and among other duties, I managed a Master in Education Program for teachers. I had hoped to work until I was at least 70 years old, simply because I enjoyed what I did and loved my colleagues as well as supporting all our students, especially those from international countries!. I learned so much from them!
My husband and I also owned and operated a small business for 10 years. The only thing missing in our lives was that, like most people, we needed more than 24 hours in our day.
The “game of life“ had a very different plan for me. Something that would irrevocably change our lives forever. Six years ago, at age 59, I suffered a very serious stroke, a 100 percent brain bleed. The left side of my body was useless and I was left handed. I could no longer do anything for myself and instead of taking care of other people, which I did since I was about 8 years old, I would need to be dependent on somebody else to do everything for me. Everything! This did not sit well with me, as you would expect, and I had a very hard time adjusting.
The next six years I lived in what I can only describe, in my own words, as a kind of semiconscious state, exacerbated by severe depression, and PTSD. I had no interest in anything and was so exhausted, every day. It was so bad that I couldn’t even hold the phone for two minutes at a time and I spent 99 percent of my time in bed (only able to lay/sleep on my back, as I was physically unable to sleep on my side as I did all my life).
In the spring of 2017, six years after my stroke, I was again in trouble and I was unable to keep any food down. This went on for months and I lost 70 pounds. One day my temperature rose to 104 degrees and I was on my way to St. Martha’s hospital, again. This was my third admission in 3 weeks and where I spent my 65th birthday. No birthday cake, not even allowed water, but I was alive! (Some people just cannot give up!)
I was informed that my illness was infected gallstones and I couldn’t understand how could this be? I had no pain there, and I had had my gallbladder removed about 40 years ago. I found this very interesting. I’m still hanging on to my gallstones, but will have them removed in Halifax this month.
Another hospital admission was because I had suddenly developed Tonic Clonic seizures (formerly known as Grand Mal). This was also interesting to me because I’ve always had a great interest, but no formal education, in human and animal medicine. My theory about my seizures is that in humans as well as animals, when our bodies get in trouble, our brain will try to help. A simple example of this is when we get a bacterial infection, we develop a fever to help alert us to the fact we probably have an infection. In my case, a doctor told me that my seizures were due to brain damage from my stroke of 6 years ago. I have a different theory. I believe that my brain produced the harshest kind of seizures possible to snap my brain out of its thoroughly lethargic state.
The official definition of seizures according to the Mayo Clinic (online) is “the physical finding or changes in behaviour that occur after an episode of abnormal electrical activity in the brain”. Years ago, electrical shock therapy was widely used to treat severe depression. It is still used today, but much less frequently. It is my understanding that it would be unlikely to have serious seizures that would improve the quality of life. In fact, the opposite is more likely, most often people who have prolonged severe seizures will develop deficits. In my case, I developed both positive and negative outcomes from my seizures.
Obviously, I already had severe brain damage from my stroke. After my seizures I realized I had additional new brain damage affecting my mouth. It took me about a month to figure out what was going on. My lips feel very swollen and my lip and mouth muscles aren’t working very well. When I get tired, my speech is not clear and when I’m exhausted I can’t speak at all. The seizures also affected my nose, throat, taste buds and smell.
On the positive side of my post-seizure life something very unusual took place, and I was literally handed a new chance at life! It took me about a month post-seizure (July 2017) to get my head on straight. Overnight I had become severely hyperactive, after six years of pronounced mental and physical inactivity. I was so hyperactive that I barely slept an hour, day or night for almost a month. A much higher dose of sleeping pills helps a lot, but I still have insomnia.
I was always a very serious bookworm, but I was unable to read since my stroke. In August I read three books in one week! Wonderful! That was just the beginning!
Although I am still physically disabled, the seizures cleared my brain, offering me many other opportunities to do new activities. During July and August I helped my daughter plan her August wedding at St. F. X. In September I was able to attend my father’s funeral and reception. I could not have done this before my seizures. I have very little memory of the RK before my seizures and I didn’t even know things like the fact that my daughter lived in Toronto for a year! It’s kinda like most post-stroke memories disappeared, but I remember everything before my stroke and my memory currently is about 99 percent!
I think it took at least the first three months of my six month stay at St Martha’s Hospital, after my stroke, to realize and accept that my life from now on would be very different, to say the least! I was always one of those people who was mechanically challenged. I couldn’t even operate a VCR or set an alarm clock, so it was a very terrifying time for me when I was told I had to learn to use an electric wheelchair. Me, of all people! I will never forget the eyes of my husband, the first time I tried to use a wheelchair. His eyes said “God help us both” because I had just hit the wall!P
If you were to ask me what I dislike most about being in a wheelchair, I have a very clear and serious answer. If someone is in a wheelchair, it is most likely that they are not mentally challenged, but physically challenged!
Life continues to surprise me and I hope that my story will help others not give up, miracles do happen. Stay tuned for my next blog as I talk about my first experiences with wheelchair accessibility and some tips and tricks to make life easier for our community members living with disabilities.
Sincerely,
Coleen Jones