It was two years yesterday that I became paralyzed, and I figured I owed you an update, so here it is.
Two years ago today I entered the hospital for heart surgery and everything went sideways. I ended up with kidney failure and paralysis and lay in bed mostly oblivious to the world for months. The hospital staff in ICU pulled me through, but more than once in the early days they offered to let me die peacefully. I, apparently, wasn't having any part of it. Neither was Mrs. F.G. After 75 days in ICU and another 75 days in recovery I was released to the rehab hospital for a further two months. They taught me what I realize now was the bare bones of how to survive in a wheelchair.
Along the way though there was always one ray of light. Every time Mrs. F.G. entered the room she was smiling like the sun itself, her face was just radiant. That's what really pulled me through. I realize now of course what incredible stress she faced behind the scenes, but I was blissfully unaware of it then.
We've both learned a lot as we've adapted to our new life. I've learned above all what real love is, the love that means you completely give up the life you used to have to care for the one you love. Mrs. F.G. as my caregiver-in-chief, has kept me not only alive but flourishing. I've had no colds or coughs, no feeling ill; hand-washing has become routine. She keeps me looking good by doing a lot of laundry and demanding that I smarten up! She feeds me a nutritious menu of healthy food. I am completely unable to thank her enough.
But that's not all. She has had to take over all those 'manly' things like putting out the garbage and car and lawn maintenance. I used to clean the bathrooms and do the vacuuming, so we've hired a lady to help with that. I still do the dishes, but we now have a dishwasher to help. Mrs. F.G. has to turn it on though; the controls are just incomprehensible. She pushes random buttons until it starts!
I've also learned that Ontario has a pretty good health care system when you really need it. Yes, we have faced enormous costs - put medical in front of anything and you can double or triple the price. But apart from the original surgery that went wrong, we have wonderful care. We see five doctors to keep an eye on various parts of my system. We get physio twice a week and I get home care twice a day, all without cost.
By now, after our frustrating struggles to get it in place, the homecare is a blessing. Five young women and one young man visit on various days to get me in and out of bed safely. With my limited mobility to get out and do things with friends, these people have become my substitute friends. That's partly a conscious choice - if I'm friendly to them, I get better care. But they're also pleasant, capable and friendly to me, so it's pretty easy to be friendly in return.
Out in the community it's a mixed story. For some, "wheelchair accessible" means that there are only a couple of steps, so I can be pulled up or lifted up easily. None of those places have ever encountered a 300 lb. power wheelchair obviously. But the fact is that all public buildings are readily accessible, as are most restaurants and some stores, so you soon learn where you can go and where you can't. Your world just narrows a bit and you accept it.
One of the big things I've learned is that in spite of accessible vehicles, travel in a wheelchair is a lot harder than it looks. First is cost, just double that vehicle price to see what I mean! And it's simply awkward strapping my wheelchair in the van. Then there's winter. Even though I can get around fine, my wheels get snowy and then I have to sit and let it all melt off when I return inside. In spite of how we love a mild winter day when the sun comes out and the temperature creeps above freezing, -5° is FAR better than +1° with slush!). Then in the summer there's the sidewalks (think corduroy roads). I won't say anymore.
In many ways, being paralyzed is the least of my problems. You also have to watch out for pressure sores on your skin from sitting or lying in one position all day and night. You have to keep your lungs clear. And all the other little issues you deal with behind the scenes. Over-arching all this is the pain. Like most paraplegics, I suffer from constant ongoing neuropathic pain. And all the medical professionals can do about it is sympathize. In fact pain is a mental thing, so if I keep busy and don't think about it I'm ok. So I'm mostly ok. When asked how I feel, I'm trying to learn to respond 'I'm great', even if I'm not!
Time is another limitation. Because my day is tied to the caregivers arriving, I'm tied to their schedule. That means I'm rarely out of bed more than 12 hours, though I certainly don't sleep much more than 8 hours. You can deduct another three hours just for the time it takes during the day to take care of myself, and another 3 hours when we go for physio. And another 3 hours in the evening when I'm just too tired to do much more than sit. So I don't have as much useful time as I used to. And Mrs. F.G. has much less time to herself than she used to.
Surprisingly, I don't think too much about the things I'm missing. Perhaps it's because we had already done a lot of wonderful travelling and have those great memories. And I was out in the woods exploring almost ever day, so I have those memories too. In this context you seem to automatically adopt to your new life and try to make the best of it.
However, the other thing we think of is the number of people worse off that I am, coping with various illnesses or early signs of dementia, often living alone and much less able than us to afford things like an accessible vehicle. In comparison I have no reason to complain!
I guess overall we're doing well. I have continued to improve a lot through my physio and exercise, and most days I think I'm all here mentally as well. Mostly though it's the daily caregiving that Mrs. F.G. provides that has brought us this far. Thank you all for sticking with me.