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.
You're an inspiration, Mr and Mrs FG!ReplyDelete
You ARE an inspiration because your attitude does not flag...at least publically. I know psychologically keeping optimistic is healthier than being in a funk, but that is easier said than done in some circumstances. You have given us lessons for being on both sides of a caregiving situation. Could you have a smaller wheelchair in the house that you could change into, or is that too difficult? Do you do upper body free weights to strengthen your shoulders and arms where you might be able to lift? Enough subtle questions! Keep up and remember the miracle that you are here!!ReplyDelete
Thank you for the tribute to Mrs. F.G. -- it's the wonderful ladies we married that have given us the great lives we've had. Thank you for the update, I don't think most people have any real idea of the time it takes to get a paralyzed person ready for the day. H and I helped take care of her mother who'd had a stroke and could neither walk or talk. Like you she seemed to have a great attitude. Thank you for your continuing blog posts -- all the best to you and your lady.ReplyDelete
I admire you both tremendously.ReplyDelete
i fell and broke my right hip 12-9-2019... i am going to stop complaining and feeling overly sorry for myself...thank you for a wake up call.ReplyDelete
Bless you both and your uplifting attitude!!
Mrs F.G., you are a winner in the stakes of care-giving, and what a tribute written today. How quickly life can change, and you both have risen to every challenge in ways I can admire in a huge way.Words fail me, I now know when I was struggling after spinal surgery that wasn't a great success, when anyone asked me how I was my reply was " Not bad ,today" when in hindsight I should have said " I'm all OK, thanks " even if I wasn't OK at all. The constant pain, and inability to do what I had been able to do so easily were always there.Now, with the internet, friends worldwide, new interests that I can do, my outlook would have been a much brighter and better one. You are an inspiration to anyone who faces a life changing event, and Mrs F.G. I do hope between all else, that machine can get some stitches sewn for you. XXX from a slightly cooler morning down here in a drought area that is almost nationwide.ReplyDelete
You and Mrs. F.G. are two amazing people. Losing your son, a serious illness, then limited mobility and all that entails. And yet you cope with such a wonderful positive outlook. You are inspiring people. I think of you often and enjoy your posts.ReplyDelete
Thank you for this wonderful and complete update. I had been following you long before the surgery, and then you were gone for so long I didn't have a clue what you were going through. It has been an inspiration to have known you then and now. I remember when your son was killed and how much I mourned along with you. Two years, and you have come a long, long way. I didn't realize how close you were to not making it. Your continued presence in my life will not be taken for granted, ever again.ReplyDelete
Two inspiring people showing the true meaning of in sickness and health.ReplyDelete
You truly are an inspiration as well as Mrs. FG.ReplyDelete
I had tears in my eyes as I read your post.
God bless you both.
FG, how could heart surgery go so wrong? Big infection? We were worried about you and it was amazing when you did come back that you could continue to blog.ReplyDelete
You are both stars for the way you have handled the last 2 years!ReplyDelete
i appreciate this narrative so much as i did not know all of the details!! i appreciate mrs. fg so much for being your bright ray of light, your sunshine. you both inspire me...watch "the notebook" a great love story much like your own!!ReplyDelete
I remember when you were gone for so long and I must admit I didn't think you were going to make it. The fact that you did make it is truly remarkable. I also think it is admirable that you have continued blogging your progress and in that way I am sure you have helped others. Also happy to see your heart felt tribute to Mrs FG. Thank you both for being openly honest and remaining public about your days, your ups and downs, the good and not so good. It is people like you who can educate people like me who have never experienced anything like what you both have and still are going through. Good stuff, keep up the good work.ReplyDelete
What a great report. We don't know much about acute care and problems. You've given us something to think about. You had a solid marital relationship before paralysis so it's seen you through. All the best to you. I do enjoy your blog posts even if I don't comment all the time.ReplyDelete
Thank you for sharing your story. I had a close family member who suffered a degree of paralysis. Wishing you all the best.ReplyDelete
Bless your wife for taking good care of you. You are both lucky in love!ReplyDelete
I don't comment but today is the day.ReplyDelete
As a past full-timer I've read many blogs from the starting of Al.
This blog has hit my husband and I at a time when we needed it the most. This past October we had give up our RV lifestyle to hospitals, rehabilitation, wheelchair and hospital bed due to a muscle disorder. Everything thing you've written about says it all. We understand what these disabiling conditions can do to a couple. We've gotten closer than we ever have in the last 52 years of marriage fighting down this path that has been given to us.
We wish you well and look forward to reading updates. Say hello to your caregiver, from a fellow caregiver.
Vic and Don
You are so fortunate to have such excellent caregivers. Good to read your update.ReplyDelete
You're both an inspiration.ReplyDelete
Mrs. F.G. is doing what one does when they love someone. There is no thought of not doing it and no thought of regret or doubts. There is only doing what must be done with a smile, firm hand and strong will.ReplyDelete
Mr. F.G. I commend you for your attitude and I know that it is not nearly as easy and as light hearted as you make it sound. Love is a commitment and it's evident that this commitment is two sided, not just one.
Thank you for your words of wisdom, your insights and your honesty.
You are lucky to have each other! Hats off to Mrs FG for taking such good care of you! I know how she must struggle doing "the manly" duties...it isn't easy but we do what we can do. I hate the snow shoveling for sure!ReplyDelete
My husband always says he is doing okay when people ask...it is simpler that way.
I am so thankful you pulled through, it is always fun to stop by your blog and see what is happening! :)
Amazing the strength you two have. You learn what love really is when going through hard times and you both have endured a lot. But through it all, I see strength in your words.ReplyDelete
This post will help so many people out there in similar situations. Bless you, and bless Mrs F. G..ReplyDelete
We remember well when you were 'silent' for so long and we truly doubted you'd come out of the hospital. When you did, it proved just how strong (and stubborn!) you and your body were! :) Thank you for your update, you are living through one of the toughest experiences presented to anyone and you are both survivors. This to me is a beautiful love story, no matter how we look at it. God bless you both.ReplyDelete
Thank you for your wonderful post. I'm sure there are days when you hate the world but your positive attitude in this post is inspiring. I love how you treat your caregivers as friends not just workers. And finally I love how Mrs. F.G. seems to be in it to win it. I pray for continued good health for the both of you.ReplyDelete