Helen Keller…Stevie Wonder…Ray Charles…Rick Hansen…Stephen Hawking…
There are so many more of us out here, only looking to have rich, full lives like anyone else, but what often stops us is not only society’s barriers, but our own.
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Since 1992, the United Nations International Day of Persons with Disabilities (IDPD) has been celebrated annually on 3 December around the world. The theme for this year’s International Day is “Achieving 17 Goals for the Future We Want” . This theme notes the recent adoption of the 17 Sustainable Development Goals (SDGs) and the role of these goals in building a more inclusive and equitable world for persons with disabilities.
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One note on the society part – some of you may not want to think a lot about it, if you don’t have to, because then it becomes clear that the possibility for anyone to become disabled is indeed a possibility for anyone..
I am a Canadian woman, living with a disability. I didn’t acquire my disability through an accident later in life. I did not develop it overtime, but from birth and still, who knows which direction my remaining vision might take.
On the day before the
United Nation’s International Day For PErsons with Disabilities
I felt a tired feeling that I sometimes get. I panic and assume my sight is worsening, but I am not sure, if that makes any real sense. I close my eyes and decide I will try to get back in to see my retinal specialist soon.
I don’t know what, if anything, he will be able to tell me, offer me as hope that I won’t be completely blind one day. He will probably see no changes or signs of the mysterious eye disease that took my left eye twenty years ago. He will speak to me of gene therapies in various stages of development, but I don’t know what hope lies in that for me. Maybe it will be my future. Maybe not. I’ve learned not to bank on anything.
That’s a part of my DNA, just like the genetic eye disease. I am conditioned to either think the worst or simply not want to hope for the things I may really really want, always fearing that the disappointment from possibly not getting them will break me. It hasn’t broken me yet, which does give me reason to be optimistic though.
I wanted to be able to see the truly unique show violinist Lindsey Stirling put on recently. Instead, I listened to all I could and relied on my helpful sister to fill in the blanks. I wanted to throw my white cane away and yelled my displeasure, and through the wish, but instead I sat and listened even harder.
I want to draw like I used to when I saw colours and when everything in my world was more clearly and brightly defined. I can’t. I want to scream in frustration but I’m resigned instead.
I want to take up the latest craze of adult colouring books, but I don’t.
Of course, nothing is really stopping me. I may not, as an adult, see the lines I may have hardly seen as a child, which are now nearly invisible to me. I could still get myself a Harry Potter or any number of other themed colouring books with a theme which fits my interest, and be damned if I miss colouring in the lines by a mile.
But I don’t. I don’t scream or rail at the world in an uproar. I find other ways to spend my time.
I want to travel and to go through life with an independent spirit and loads of self confidence, but I don’t. I try and I work at it, but I’m scared.
I find a travel series, a BBC documentary, available to me on Netflix. It’s Stephen Fry, whom I love, and he is doing a road trip across the United States in his British cab. I know him from his narration of the Harry Potter books and for his intelligent and witty character. After watching him visit all 50 states I now know he hates being on a horse, dancing, and skiing. He loves science and culture and literature.
I watch him on his trip and I long to go on one of my own, but I fear getting lost in the big, expansive world and I worry that my white cane will attract only pity. I want to grip it with extra determination and go anyway. It’s all in my attitude, right?
I can’t drive a cab across the country. I want to believe I will see more of the world anyway, even without definition of sight.
I don’t try to revisit childhood experiences of mine by colouring. Instead, I watch a travel show which I’ve heard of but only now decided to give a chance.
The host speaks to one woman in her sixties, widowed after her late husband’s long battle with illness, but who has now found new love with a man from England. Her happiness is infectious. Her newly found love walks down the ramp in the arrivals terminal at Toronto Pearson International Airport and gets down on one knee. Love is lost and can be found again.
I feel warm just by watching and listening to her story.
The host also speaks to a young man and his parents. The son is on his way to participate in Rio, at the Paralympics. He was paralyzed from a diving accident and now plays wheelchair rugby.
And then there was the grandmother, daughter, and grandson saying their goodbyes. The young guy and his mother are heading back to Britain after a visit with Grandma. The mother has RP (Retinitis Pigmentosa). She carries a cane, but the son speaks of wanting his mother to have companionship with a guide dog, as he will soon be going out on his own and doesn’t want her to be alone. He has worried about her safety all his life. She admits to being unsure about going for a guide dog once they get back home, but her son’s words cause her to rethink things.
She grips her white cane. I grip mine. She has been losing sight for years. I’ve been blind since birth and losing since. Am I any further along in accepting my circumstances and my white cane than she is?
People ask me all the time if I am ever going to get another guide dog. I don’t quite know what to say. Yes, they may provide the necessary confidence boost for many. I consider it.
I don’t think any dog will ever compare to my Croche, But is that all it is?
I can’t put another animal through what I put Croche through. She was so well trained and so fittingly suited in temperament. She was given to me and I was trusted with her. A lot went into all that. We were a team, but I failed her.
My ever growing illnesses caused me to sleep and her to dutifully stay by my side, but she was prevented from shining. She was my pal, but I don’t take the responsibility of a working dog lightly. I don’t know what my future will bring and I can’t bring myself to bringing another animal into that.
I want to curse what stops me, but what often stops me is me. And so I would just end up cursing myself, again and again.
Or, I could take hold of my white cane and use it for betterment, for working for some of my dreams, and for hardening my resolve and building my often feeble confidence.
My feelings of shame when I walk with my cane are hard to describe and hard to fight off. I will never be happy if I don’t try. Fear and disappointment stop me from even trying. What a waste that would be.
There’s so much imagery here without you being able to see, you know? You do an amazing job of describing a scene so that I can see it in my mind without ever seeing it. The airport, the cane, the wondering whether you accept blindness more than somebody who had sight for longer. Also? I don’t do the adult coloring books either. I know it’s probably therapeutic but it feels like a waste of time to me. I’d rather create something original. I don’t know. I would like to hear more about your dog though. And maybe on your thoughts on getting another.
Seeing without actually seeing. That is right Kristi.
I see how many people benefit from assistance and therapy dogs every day. More to come I’m sure.
I was diagnosed with lung disease a little over a year ago, I’ve needed supplemental oxygen ever since just before the lung biopsy that confirmed it. I think I dealt with things pretty well most of the past year but recently I have almost just given up. I’m ashamed of myself for how lazy I can be sometimes and I struggle to find any real motivation to care.
Last month I was put on the waiting list for a lung transplant. I was a nervous wreck for awhile. Now? Well now I don’t stress like a crazy person if my phone isn’t right next to me. I don’t want to miss the call but part of me worries that new lungs would be wasted on me.
I read your post and envied your passion. Your lust for life.
I’m ashamed of myself all over again for not being grateful for the health I do have despite the sorry state of my lungs. I could be worse off, needing more oxygen than I do, unable to even leave the house, etc.
There is more contributing to my mood recently than just my busted lungs but the point is that you have reminded me that I can still dream and that I should. I’ll have to work on that.
Oh my. Thank you for the compliments, but it’s not such a positive outlook all the time. You caught me on a reflective day.
I didn’t get into all my medical history in this post, when speaking strictly about disability, because I guess I don’t consider all of it the same, but I do understand a little of what you speak of.
I can’t imagine what it feels like to need oxygen, not really. I hope you don’t let those feelings and wrong thoughts tell you you are lazy too often. Needing help to breathe is serious stuff. I highly doubt they would put you on the waiting list if you weren’t capable of doing well with a transplant.
I have had a kidney transplant and it is a wondrous thing, when it works. I have seen what it’s like to be on the transplant list, as my brother was on it a few years ago.
Waiting and feeling stuck and frozen is the hardest thing about it. Life does move on eventually, but kidney is a different situation than lungs.
I do believe, no matter one’s medical status, that dreams aren’t pointless things to have. It helps pass the time until, hopefully, there is more energy returned so that taking steps toward those dreams can possibly become a reality.
I hope that for you and I hope, as the holiday season approaches, for more strength for us both, to look to the future and to never stop dreaming.
It feels pathetic to say but I don’t have dreams or real hopes for the future. I want to see my daughter get married and have children but those dreams are more for her than for me.
It would be nice to still be able to imagine growing old with my husband but that is hard to do now and even harder in this dark place I’m in these days. Oh how I need sleep.
I’m dreading the new year. the holidays are the best time of year for me. when the new year comes I don’t know what I will look forward to.
Sorry, i suppose I’m feeling a little sorry for myself which isn’t really like me.
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