Trying to tell someone what it's like to be disabled is like trying to tell the difference between black and white to a blind person. What do you say? How can you explain it so that they can understand you? You can't. It's a horrible feeling when you know you can't walk or talk very well and when you rely on other people to do the things for you that you used to do everyday, when doing it was something you took for granted. Having to deal with suddenly becoming disabled is probably even harder to explain because you know what it's like to have everything at your disposal and then have it taken away. It's not an easy life to live, but depending on how much of a challenge you can cope with, it's not an impossible one either.
The first thing you have to deal with is the amount of isolation you live by. There's just no getting away from it. It will last as long as you do. That could be years. If you're reading this and are disabled you'll know that already. It's not an ideal situation to be in, but you'll live. How long you'll live for is another story, but try to not let that worry you. Worry about how you'll feel every waking moment. You'll hold your head in your hand (the one that works). To all intents and purposes you'll look asleep. Except you're very much awake. You sit in your chair, taking it all in. That's all you CAN do.
My brain is very active. My body is not. I sleep with my knees bent (a result of the stroke) and it takes two people - using a hoist - to get me out of bed in the morning.
I've had to put up with lots of things and will do for the rest of my life. Being disabled has meant i've had to suffer. When i'm doing physio exercises, partixcularly so.
So, what's it like to be disabled? Don't ask, you don't want to know..
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Thanks for commenting on my blog. I admire your spirit and wish you the best.
ReplyDeleteI had a good look around you blog and found it was very informative
DeleteI don't know what it's like, that's true, but I saw what the stroke did to my dad, and I tried many times to put myself in his position. As you described, his abilities and independence were there one day, and gone the next. I admire your spunk, Terry. It's greatly needed when you suffer a huge change like the one you've had. I'm glad for your sake that computers are available so you can communicate through your blog. Computers are not all good and not all bad, but they are valuable indeed to those who cannot talk or get out but still want company. Please keep writing; you are helping your readers to see what it's like.
ReplyDeleteThe lack of independence is the most demoralising for me. And yes, some days it does get me down. As I have no doubt it does you (with more justification because your disabilities are more profound).
ReplyDeleteI am so glad that you have access to a computer and the blogosphere.
It DOES get me down sometimes,but that's to be expected. Being able to read how YOU feel and how you react to it helps me a lot. I just feel so useless, but am grateful for my iPad which allows me to say what I want. I hope I don't get on people's nerves.
DeleteI try to communicate my thoughts as best as I can. I hope - as someone who knew somebody who had ac stroke it's useful..
ReplyDeleteI'm going to read your blog tonight Maybe I'll learn something about your father that resonates with me.
ReplyDeleteI've only written a couple of posts about him, Terry. But I'm thinking about writing one that explains more about what happened at the time of his stroke and the way it changed his life. Stay tuned.
DeleteAlso, I wish that able-bodied people would be better about recognizing that we all have disabilities in some area or another. There is no perfect human. And there are a lot of people whose disabilities lie in areas like empathy, compassion, kindness and helpfulness. Many so called disabled people are superstars in these areas but are not recognized for it.
Ok Jenny. It's important that disabled people aren't overlooked because of their disability although that DOES happen more times than you think it should.
DeleteI have a disability, it is mild as disabilities go but it is frustrating and upsetting to become less able. It makes employment harder to get and because I am not too far off normal (at least in appearance) I am often expected to be able to do things I can't and then it's awkward explaining. I also hate it when well meaning people ask me "so how is your walking going?" way to make me feel like a freak, right?
ReplyDeleteI'm sorry you have been so badly affected, my grandma had a massive stroke back in the eighties when treatments were not so good as they are now and her frustration was obvious for the rest of her life
Thanks for commenting. Disability comes in all shapes and forms. I realise that some people get it and some people don't. Having to put up with it is something that came without warning.
DeleteTerry, I worked in the disability field for years and learned how important funding can be. We drain the budget here in the USA to pay for military efforts that few of us remember why we're there anyway. It's frustrating. Our countries could do so much good with those funds towards funding research and providing equipment to those who are disabled and in need of it. I spent 4 and a half years in the US Air Force and another 22 years working in the disability and Human Resource area of the Federal government, and I know here in our country we could do so much better when it comes to taking care of people and improving quality of lives.
DeleteI never knew I'd like gardening so much until I read your blog. It's a good read.
DeleteYou are right. Most people, including me, have no idea what it's like to be disabled. Thank you for sharing these thoughts with us.
ReplyDeleteNo, thank you for posting. Being disabled is not fun, but that's life. There's always tomorrow except it's pretty much the same as today...and yesterday. Sorry to be so gloomy.
DeleteAs I have said before, reading your blog has taught me so much about what life is like after a major stroke. I could read some medical website and find out the facts about strokes but to hear the voice of a stroke victim, well that's special. You get the 3D human picture. Folk like me - we walk around never really imagining that a stroke could happen to us - but of course it could.
ReplyDeleteI'm not going to bore you with the facts, but I'll try to tell you how I cope with it. As far as I'm concerned, S.A.L.T. are the bad guys for treating us the way they do.
ReplyDeleteI detest them and their logic. They've never suffered from a stroke, but like to think they're experts. Far from it!