You scratch for hope

[Sulindac]

You scratch for hope, at best, in a moment, and when that hope in its reality stares back at you you flee in fear. Because the hope is what saves over the flat, mathematical roll of bio medical anti-factual, course, cold reality. I wait for a cure as i wait for time. Waiting for what I had, and could have.
After all, why does one change the hell that makes them. Like a prisoner set free they are lost. Shades cant color any new reality after war.
Yet now paralyzed by hope, fearing of freedom staged before me is another purported cure, bottled hope, in its round pharmaceutically compounded bottle.
I present in my disbelief and dismay at reality, presenting with another attempt at a cure for a largely incurable disease.

[Guest]

You are good with words!!!

You know, I think the key to living with a chronic condition and be happy anyways is to find a way to accept what is, and make it as tolerable as possible. Also, important, to not give in to the fear of all the what-if's... can't control the future, so best to just deal with the present as it is.

Back in 2009 when I was at my worst, I couldn't even keep my eyes open for an entire day - I'd spend a few WAKING hours each day with my eyes shut and cold compress over them to dull the burning. That was a really tough year for me - both mentally, and for my eyes. But what helped me a lot back then, was to work on accepting the worst as it was. I could only be happy if I just accepted that I couldn't do the stuff I used to (for now, anyhow), and savour the things I COULD do (even if it was only listening to an audiobook with that cold compress over my closed eyes). I worked a lot that year on not allowing myself to dwell on the potentially scary what-if's also. And I tried to focus on the fact that others as bad off as me had experienced remissions, or even permanent improvements, maybe I would too. Having a tiny bit of hope, however small, was enough to make it worth my while to learn everything there was to know about my condition, learn everything there was to know about various treatments, etc.

Fast forward to now: I'm doing a million times better. My eyes have improved a TON (granted, I'm still far from normal, but I'll take what I can get!!!)

I no longer dwell much on a cure since if one ever comes along for me, I have no idea when that might be.

As far as hope goes, I hope that I continue to be able to handle this condition, I hope that my condition continues to be tolerable, and I hope that it doesn't get worse. That's it. Anything better will be a bonus.

But it's possible to find happiness.

I was out with a group of women last night, one of whom basically went blind right after she got married (she was so young!!!). She was normal as could be, but came down with some freaky virus that took her vision. She is now legally blind in 1 eye, and has only 2.5% of her sight in the other eye. She can't drive. She can't work. She can't do a whole bunch of things that used to be easy for her as a sighted person. As I understand it, every week she has to see a specialist for some kind of injection INTO HER EYEBALL. She has lost so much, yet she's happy, she has a positive outlook on life, and is a genuine pleasure to be around. I have no doubt that losing her sight was horribly traumatic, but she's figured out how to live with it.

So, as bad as my eyes are, I'd rather have my own eye issues than the ones she has. Purposely thinking of all the things that would be worse make it easier for me to be happy despite my problems, and it makes it easier to hope for the future. Maybe such a strategy will help you to hold onto hope for the future too.

[littlemermaid]

http://www.huffingtonpost.com/soania...?utm_hp_ref=tw Here's a 27yo pregnant doctor diagnosed with Parkinsons talking about how to live a good life (tweeted by Sjogrens Foundation)

[Guest]

A fantastic article - it deserves it's own thread - I think that article would be of interest to anyone in this forum for sure!!!

[LaDiva]

I understand how you feel Sulindac. Well said, especially the part about the mathematical roll. Write on, poet!

[Sulindac]

Today, the Black man tried to rob my foam lined protective sunglasses outside a local rainier valley burger king. Apparently they looked designer, and real pretty, along with my cell phone. When asked to lend him the glasses (indefinitely) i replied with a "no, i need them i have an eye disease." He seemed no longer interested. I then departed, carrying my disease infested, albeit intact and fully mine, sunglasses.

[Guest]

Thank goodness he was a thief with at least a little bit of a conscience left!!! Glad to hear you still have your glasses!

[NotADryEye]

Hope. You are breathing with the worst and best, in you and outside of you. Someone says a word and you think you have hope in hand again. But it is snatched away before you can make a fist. Emptied again and again. You find the worst place. You take your mind to darkness. Is there pain in death? What if there is pain in death? What then? Desperation for eternity? Eternal agony? Yes, you scratch. Exactly, scratch. One last time. Just one more time. The last scratch ever. And surprisingly, like biblical clouds parting and petals falling from the sky on your head, there is hope.

We all have a relationship with hope. Some of us know that there is no need to give up hope and so we say, we declare and implore, "don't give up hope." We mean it.