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Thread: Don't worry - just another decade or more!!!

  1. #1
    Junior Member
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    Don't worry - just another decade or more!!!

    I appreciate all the hard work of Dr Wise and other researchers...
    But I've just gotten so sad, disheartened and hopeless lately.
    I just read the cure site... and it's STILL at another 5-10 years... although they seem to have no idea... How can this be?

    This summer will mark my FOURTEENTH year in a wheelchair. Are you kidding me!?!?
    I've lost my entire 20s being in this thing. And it's ALWAYS been JUST another 5-10 years...

    I used to be able to ignore the injury, hoping it wouldn't last long.... then not too much longer.

    Instead, I just focused on my career and friends .... and working on things I could do something about. I was the one with the spark, the one who cheered everyone up and brought smiles to the room... But still felt so detached from people, their simple problems.

    But then I met this guy... and fell in love. All of sudden I saw all the things I wanted in my life - things everyone else seems to have so easily. I wanted them too. I was so happy.

    And then I moved across the country to be with him... and it didn't work out.
    Probably the chair.. it's just too difficult. I wouldn't choose this. I DIDN'T choose this.
    I've lost my spark.

    It would help to know it won't be forever... but I just can't imagine the rest of my life like this.

    How can we just just keep living like this? Surviving while the mere sight of the wheelchair reminds others how much worse their lives could be?

    WHY ISN'T MORE BEING DONE!?!?

  2. #2
    Brother and I are candidates for heart trouble mom may have accidently passed a flawed heart gene. Other disabilities will kill me, or I will over dose before the cure so why worry? I don't think I'll be alive in 5 years, 4 years is a bit much, 3 years maybe. No cures for me, even if SCI is cured, I am not just SCI, the other disabilities make me less curable and are worse than the SCI.

  3. #3
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by Lisa View Post
    WHY ISN'T MORE BEING DONE!?!?
    We have to make it a priority in this country. Unfortunately (or fortunately), there was a tiny letter writing campaign a few years back that saw Alberta, Ontario, BC and the federal government all throw in millions.

    To where that money went is what I'd like to know. Out of $12,000,000 in Alberta, some student who comes up with 'smart underwear' to avoid pressure sores gets a $5,000,000 grant to develop this? I hope it wasn't out of the original $12,000,000 because that is not where I'd like my money to go!

    The Rick Hansen Foundation a few years ago came up with some super duper dildo .. lol .. not where I'd like to see my money go either.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  4. #4
    I've basically given up on the RHF/ ICORD and any cure-related activity in Canada altogether. The funding seems to be there, but not the prioritization of clinical trials. Just one useless psycho-social or adaptive aid study after another.

    http://icord.org/research/research-studies/

    Lisa, I understand your frustration, believe me. But waiting and hoping for a cure to fall out of the sky isn't going to bring it any closer. Put that spark to use. If nothing else, cut & paste your post and email it to the RHF & ICORD:

    http://icord.org/contact-us/
    http://www.rickhansen.com/code/navigate.aspx?Id=6

    Demand accountability. Kick some ass.

  5. #5
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    I want to try to be careful of how I word this because I do appreciate your despair, but I have been SCI for 44 years now and one is always better off putting their efforts into the things they CAN control, like friendships, work, interests, because to cling to a desperate level of hope often can be an anchor holding people back from the possibilities that still do exist for them. I am sorry that your boyfriend did not stay, but while it might be hard to view it this way, think about the fact that if he could not deal with your injury it was probably only a matter of time or circumstance before he found something else that he couldn't acomodate. I think SCI can act like a big old grain thresher, separating out the chaff from the wheat, getting rid of the superficial and allowing the possibility of the authentic relationship.

  6. #6
    Senior Member Tara's Avatar
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    I think we all understand the frustration. All these organizations led by people who aren't in chairs themselves.
    I'm all up for donating, but I will NOT donate to places wanted to fund ridiculous things like the underwear that prevents pressure sores that Lynnifer pointed out. Plus so much of the donations go towards keeping the organizations running - ie: paying the overinflated salaries of their CEOs - instead of towards funding research. Its SO frustrating.

  7. #7
    It's definitely an ice-breaker... and engenders a certain calm honesty in new relationships...

  8. #8
    I know there are many here that live for a cure and when I was injured 28 years ago, there was a promise of a cure in 5 years or so......and so it has been for all of the years that have followed. it is the or so that is the sticking point.....
    My advice to all of you younglings is to believe in a cure, work through organizations to obtain a cure.....but don't put your life on hold for a cure FOR YOU....
    Yes.....there is no doubt in my mind that ONE DAY, there will be a cure, whether you or I will live to see it or even be candidates for the cure is a whole other story. Believe but have a life plan.....just in case.

    All the best,
    GJ

  9. #9
    Senior Member Kris's Avatar
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    Be happy with what you have. If you don't you have just wasted what you do have. I guarantee there is someone worse off than you wishing they could have what you have.

  10. #10
    Quote Originally Posted by Eileen View Post
    I want to try to be careful of how I word this because I do appreciate your despair, but I have been SCI for 44 years now and one is always better off putting their efforts into the things they CAN control, like friendships, work, interests, because to cling to a desperate level of hope often can be an anchor holding people back from the possibilities that still do exist for them. I am sorry that your boyfriend did not stay, but while it might be hard to view it this way, think about the fact that if he could not deal with your injury it was probably only a matter of time or circumstance before he found something else that he couldn't acomodate. I think SCI can act like a big old grain thresher, separating out the chaff from the wheat, getting rid of the superficial and allowing the possibility of the authentic relationship.
    Eileen--very nicely put and well versed. I try never to give up hope and realize that I can always look around and see others worse off then I. Frustration with this horrible thing is nothing, if not normal. As far as a cure, for my own peace of mind I've adopted the old saying--"Hope for the best, but expect the worse." In the mean time--I'll work with what I've been given and do my best to make the life I've presently been given as good as it can be.

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