You Always Have a Choice
Guest Blogger: Girl With The Cane
I stumbled across Sarah (AKA Girl with the Cane) when I found myself
reading her blog last year. I am clearly not the only one who finds her musings on living with a disability and her articles interesting as she has recently been nominated for three Canadian Weblog Awards.
I instantly loved her strap line,
‘living with disabilities, too stubborn for my own good and too opinionated to stay quiet’.
Sarah has undoubtedly been dealt more than her fair share of lemons but her final line here shows she is living the ‘lemonade way’. Thanks to her for writing this piece for my site. At this time of year, as she says so herself, we often look ahead at what’s next. As she also says, ‘you always have a choice’…..
Check out Girl With The Cane at www.girlwiththecane.com and look her up on Twitter.
Life’s greatest truths are often the simplest, yet they’re the ones with which we have the most difficulty.
I know it was that way with me. Life had been trying to teach me, “You always have a choice” for quite some time. However, I was not prepared for the way I’d have to put it into practice the first morning that I woke up at Penetanguishene General Hospital in Penetanguishene, Ontario.
It had been a tough few months. The journey had started back in November, 1998, during a job interview in Parksville, British Columbia. I had gotten a terrible headache that I later learned was a hemorrhagic stroke. I was very fortunate not to suffer any lasting damage from the stroke. The Royal Victoria Hospital discharged me with a brain AVM or arterioveous malformation. AVMs are present at birth, and involve blood vessels. They can happen anywhere in the body. They are particularly serious in the brain, however, as they can cause strokes like the one I experienced (or worse).
It was a lot for a previously healthy, 22-year-old woman to accept.
The doctors at the Royal Victoria Hospital told me that the necessary treatment might involve brain surgery. Other potential options included radiation, a process called embolization, or a combination of the three treatments. I went home to Ontario to be closer to my family while I investigated treatment options and went through the treatment itself. In May 200 I had open open-brain surgery to treat the AVM – and a stroke a few days after the surgery, much larger than my first one. My left side was weakened almost to the point of paralysis, and I was having seizures. I spent several weeks in the hospital getting the seizures under control with medications before an ambulance transferred me to Penetanguishene General Hospital.
That wasn’t a good day. By the time I reached PGH, I was exhausted and terrified. Nerves had been making me vomit all day. I apparently told the nurse who helped me get ready for bed that there was no point in keeping me at PGH, because I was never going to walk again (I don’t remember this conversation. I was told about it much later.)
The next morning, I woke up before the nurse came in and looked out the window as I lay in bed. I knew that I was supposed to begin physiotherapy and occupational therapy that morning. I hated that I was there. I hated that I was losing my summer to stroke rehabilitation. With everything in me, I didn’t want to be at PGH, or do their therapy, or practice getting up and down their main floor ramp safely in their wheelchair lie the nurses had showed me how to do the previous day. I didn’t want any of it.
Then I thought about the five weeks that I’d just spent in the Toronto Western Hospital. I had spent those weeks in bed, in my pyjamas. Nurses had helped me to dress and undress, given me sponge baths, and brought me the bedpan when I needed it. I had been out of bed maybe an hour or so a day to sit in a chair, and that had been exhausting. If my book fell out of my bed, someone I’d had to ring the nurse bell to get someone to come get it for me. I’d slept with the bed rails up, as movement was so limited at that point that a fall out of bed could have been very dangerous. I couldn’t even position myself in bed at that point.
That is what the rest of your life will be if you don’t do this, I thought.
I didn’t want that.
So, as hard as it was, I got out of bed every day. I cried in the shower every morning. One day I cried all day. The staff made me do my exercises anyway, which seemed extraordinarily cruel to me at the time. I know now that stroke survivors often experience what experts call emotional lability – severe mood swings. The best way to get me to stop crying was to get me doing something else, which eventually did work. The emotional lability got better as time passed, but did carry over into my time at Ottawa Rehabilitation Centre, where I also had a couple of good crying jags.
But I want to get back to this idea of always having a choice. I left my seven months of inpatient rehabilitation right before Christmas 2000, so this time of year always brings back memories of coming back to live with my father, still with a great deal of recovery ahead of me, and asking, “What happens now?” I’m extremely fortunate to be surrounded by loving and supportive family, friends, and community, but I don’t mind telling you that I was scared to death. I did outpatient therapy and got stronger, but it was obvious that my weak left leg and hand were going to be issues with which I might always struggle. The theme of “choice” kept coming up:
- I could choose to try to keep hanging on to my old life, when things have obviously changed.
- I could choose to accept that my life has changed and embrace it.
I try for the second option. It’s not always easy. But my father said to me early on in this, “Just because your life is different than you thought it would be doesn’t necessarily mean that it’s going to be worse than you thought it would be.” So, twelve years after leaving rehab, I’m doing pretty well. I live on my own with my two cats. I can’t do everything one-handed, but I can do most of what I need. Since the stroke, I’ve done a great deal of work with people with a variety of other disabilities, as a paid front-line worker, a volunteer, and most recently as a disabilities blogger. All things considered, I’m pretty content – weak left side and everything.
I think that the most interesting thing that I’ve noticed about being a person with disabilities is that people take cues from me about how to respond to my disabilities. So I choose to live my life like my disabilities aren’t the most interesting thing about me and that I’m willing to live a full life and try new things in spite of them. People tend to respond accordingly.
I’ve tried yoga, ballet, and skiing with a weak left side… I’ll let you know about the next adventure!