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Thread: Quads what keeps you going?

  1. #11
    I’ve been a quad almost 22 years (I’m turning 32 this year) and I’ve definitely battled with depression and all sorts of things. I have pretty terrible negative self-thoughts, but I think one thing that keeps me going is the will to prove myself and others wrong. For me, my depression isn’t so much about being a quad, but instead the limitations I face because I have a disability and honestly a lot of those limitations are financial and not physical. If I had more money, and didn’t have to stress over those kinds of things, I’d be a lot happier.

    I’m not sure exactly what level quad you are, but what’s actually stopping you from being happy? Are there things you want to do that you can’t, because I’ve seen lots of people in chairs living pretty amazing lives—and not just the paras.
    Don't call me Barbie, my name is Jen!

  2. #12
    C7 complete since 1989...

    - In July 1989, the son of my step-grandmother's coworker came to give me a 4 hr pep talk at Blue Ridge Hospital and tell me how good my next rehab at WWRC would be.
    - His name was Dennis and he was a C5, injured in late 1988. He was injured as a resident of WV and didn't qualify for rehab in Virginia. When he got out of acute rehab he went straight home and then moved across the state line to Virginia to qualify for Va Medicaid so he could eventually go to WWRC.
    - Dennis knew he got shorted on rehab and was unbelieveably excited to get to go to WWRC and get on with his life. I mean he was off the charts thrilled about going there to better his life.
    - I was thankful that he came to visit me and we got along well but I thought he was exaggerating about WWRC
    - I went on to WWRC in mid-September 1989
    - Dennis finally qualified for Va Medicaid and came to WWRC in the first week of December 1989. I was scheduled to leave WWRC a week before Christmas 1989.
    - Dennis and I had lunch and dinner together at WWRC on his first day there. I was still on the unit and he was admitted to the assisted living units.
    - At dinner Dennis told me that he waited too late on Sunday night to get help getting into bed, so he slept in his chair leaning over onto the bed. He was proud of this clever move he read about in a rehab manual.
    - The next morning the aides helped him into bed and to get ready for his first day
    - On his 2nd day, I passed him in physical therapy and said hello. He got out earlier than me from PT and headed to lunch.
    - When I got out of PT, I headed down to lunch. When I got to the lunchroom, there was a commotion and all the nurses were in a circle and several were on the floor giving CPR to someone.
    - I saw through the crowd that there was an empty wheelchair.
    - They cleared the lunchroom. The nurses eventually came out. I asked one what was going on. She said a new guy who just came to WWRC the day before just passed away in the lunchroom. I asked if his name was Dennis and she said she thought so.
    - It was Dennis who passed away. They think he had a pulmonary embolism.
    - I have thought about Dennis every single day since. I barely knew Dennis and thought he was way too over the top about WWRC. I was wrong. He had a great spirit and outlook and died way too young.
    - I have bad days just like everyone but I have a mantra, "Remember Dennis", and say it to myself everytime I start feeling negative or depressed.

    I can see where this may not apply to this thread but I tell you it has kept me going for 30 years.
    Last edited by Patton57; 01-20-2019 at 10:32 PM.

  3. #13
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    Quote Originally Posted by mrb View Post
    I wish I knew the answer I've been and still go through a lot of soul searching on why I bother. C3 complete and vented and have asked for vent switched off from day 1 but was initially denied it. Last year I started again on the process to get it switched off, had strong support from all the medical professionals involved and I have the go ahead to do it. Getting that helped a lot, I know that I can exit when I want and I now just go day to day seeing how I feel. I'm lucky to have a job, not that many hours a week but I am self employed so do as much or as little as I want. I have an off road wheelchair so try and get out in the hills around me provided that it isn't cold. Not for everyone I guess but it does help me on bad days. Don't socialise very much and am watching my marriage slowly fall apart, when that happens it will be time to go. I try and travel for work related events, off to a 4 day trade show next weekend. Once again lucky that I have a job. When I look at my life I do very little compared to pre accident but I try and put that to one side and just focus on the day I'm living. It doesn't always work and I'm back to wondering why bother? Usually followed by a sleepless night and a lot of thinking. Next day might be different and I try and think positively.

    I've got advance directives in place and won't go into hospital again, if I have problems then my body makes the decision I'll just refuse treatment or if suffering ask for vent switched off.
    Michael,
    I'm glad to see news of you, but unhappy that it is not better news. I'm so sorry your marriage is in decay. Mine is too and it can be a source of depression and just feeling very stuck, at times. AB or quad, when things are bad we wonder why we bother to continue.

    You have been in my thoughts from time to time because what you share about your life and thoughts has made a real difference to me.

    Tetra

  4. #14
    Quote Originally Posted by Tetracyclone View Post
    Michael,
    I'm glad to see news of you, but unhappy that it is not better news. I'm so sorry your marriage is in decay. Mine is too and it can be a source of depression and just feeling very stuck, at times. AB or quad, when things are bad we wonder why we bother to continue.

    You have been in my thoughts from time to time because what you share about your life and thoughts has made a real difference to me.

    Tetra
    We can only control our own lives and no matter how much I want to keep it together I can't make someone else stay. So limited in what I can do and I understand her frustration and unable to change things. A problem for anyone with an SCI but worse for a high level quad when you can't even touch your partner. I'm not depressed just realistic, can't envisage a life alone. I hope that you manage to work it out.

    Getting the green light to switch the vent off has really helped, I thought that I would have to go to Switzerland which was a logistical nightmare. I'm now a lot more comfortable knowing that I have control, it has helped me a lot. I'd still prefer my body to make the decision but it keeps fighting, all the data says that I should have had a ventilator associated pneumonia by now and I haven't had a mild chest infection.

    We'll see where it goes but just knowing that I can end it makes things so much easier mentally, I'm lucky to have that option.

  5. #15
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    I'm stubborn and don't want this SCI to win.
    "Never argue with an idiot; they'll drag you down to their level and other people may not be able to tell the difference."

  6. #16
    Thanks everyone for the feedback. So I'm not alone in my thoughts.. Life can be so cruel.. I hope the end is near. Good luck everyone.. (Para's you guys get to at least participate in activities, even though it's not ideal)
    "Life's a Party and Your Not Invited"

  7. #17
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    Quote Originally Posted by mrb View Post
    We can only control our own lives and no matter how much I want to keep it together I can't make someone else stay. So limited in what I can do and I understand her frustration and unable to change things. A problem for anyone with an SCI but worse for a high level quad when you can't even touch your partner. I'm not depressed just realistic, can't envisage a life alone. I hope that you manage to work it out.

    Getting the green light to switch the vent off has really helped, I thought that I would have to go to Switzerland which was a logistical nightmare. I'm now a lot more comfortable knowing that I have control, it has helped me a lot. I'd still prefer my body to make the decision but it keeps fighting, all the data says that I should have had a ventilator associated pneumonia by now and I haven't had a mild chest infection.

    We'll see where it goes but just knowing that I can end it makes things so much easier mentally, I'm lucky to have that option.
    This makes so much sense. Feeling in control is basic to human well-being, though many millions of people cannot get it. I have my plan, I have the stuff recommended in "Final Exit" in my closet. No worries.

    Of course you understand your wife's frustrations- they are the same as yours. She can bail, you cannot. I feel that both hubby and I gained so much in the earlier years from being together. That left me a much more whole person and "forever" is unnecessary. Your situation is so different- yet you handle it. May you have a bit of luck going forward.

  8. #18
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    Quote Originally Posted by MagikLair View Post
    Hello,
    been a quad for close to 25 years and I am having trouble keeping things going. I am just so depressed and would like to die. Money and some success haven't changed things..
    It's so hard to live in a world where there are so many things to do but yet you cannot participate.. I know there are a few people who want me here. But how about my quality of life?
    The happiest news I could receive is a doctor saying you have 3 months to live. Sorry for complaining I just am tired of this and want to know how others can stay positive.. Any feedback would be great!
    It's really hard isn't it? I couldn't help but sigh seeing your post as I've been feeling the same a lot lately. Injured in 91... got a good job, financial security, some good friends, some hobbies I enjoy, building a house, have a beautiful gf out of league who wants to marry who every day I wonder how such a gorgeous girl could want me with all the crap that comes along with me due to SCI... I mean what am I complaining about? I should be happy all things considered... but every day... up & down emotions... sadness, depression.... a fight not to be bitter/jealous when my gf mentions some experience she had I missed out on... or think why would I want to go there, what can I enjoy there, when she talks about taking a trip somewhere together... I don't know... it's hard... I miss getting up excited for each day feeling like anything's possible and feeling like there's a world of exciting opportunities awaiting me...... even on my best days I'd be lying if I said I woke up feeling like that. But the reality is it's mourning for those opportunities lost due to SCI... not that there are none. I wish I could go walk on a beach in Hawaii, play a game of pickup basketball with a few friend, bend my gf over and fuck her like I want to in my mind... but I can't... likely never will. And every day that will frustrate me. But I need to try to focus on the fact that I can go do an RC hobby with friends or catch a movie.... maybe never walk on that beach but still maybe experience the beauty more than just on my tv set.... and at the end of the day despite how inadequate I feel & doubtful I make her as happy as she deserves to be, my gf still wants to take me to bed, not some other guy. So the long-winded Coles notes answer is even if it's not the perfect life I dreamed of, far from it, it's still a lot more than many others have, more than it could have been, and as painful as it is at times to know what I'm missing out on it's the only life I'm going to have and I need/want to be as greedy as I can each day to enjoy & take as much enjoyment from it as I can. And I guess that's my best advice to you... be greedy, be stubborn, be angry over sad, and try to be a glutton in what you can enjoy to keep your mind off that which you can't. We'll never have what used to be back... and the more we mourn that the more we miss out on what's right before us that we can enjoy.

  9. #19
    Quote Originally Posted by RJC View Post
    It's really hard isn't it? I couldn't help but sigh seeing your post as I've been feeling the same a lot lately. Injured in 91... got a good job, financial security, some good friends, some hobbies I enjoy, building a house, have a beautiful gf out of league who wants to marry who every day I wonder how such a gorgeous girl could want me with all the crap that comes along with me due to SCI... I mean what am I complaining about? I should be happy all things considered... but every day... up & down emotions... sadness, depression.... a fight not to be bitter/jealous when my gf mentions some experience she had I missed out on... or think why would I want to go there, what can I enjoy there, when she talks about taking a trip somewhere together... I don't know... it's hard... I miss getting up excited for each day feeling like anything's possible and feeling like there's a world of exciting opportunities awaiting me...... even on my best days I'd be lying if I said I woke up feeling like that. But the reality is it's mourning for those opportunities lost due to SCI... not that there are none. I wish I could go walk on a beach in Hawaii, play a game of pickup basketball with a few friend, bend my gf over and fuck her like I want to in my mind... but I can't... likely never will. And every day that will frustrate me. But I need to try to focus on the fact that I can go do an RC hobby with friends or catch a movie.... maybe never walk on that beach but still maybe experience the beauty more than just on my tv set.... and at the end of the day despite how inadequate I feel & doubtful I make her as happy as she deserves to be, my gf still wants to take me to bed, not some other guy. So the long-winded Coles notes answer is even if it's not the perfect life I dreamed of, far from it, it's still a lot more than many others have, more than it could have been, and as painful as it is at times to know what I'm missing out on it's the only life I'm going to have and I need/want to be as greedy as I can each day to enjoy & take as much enjoyment from it as I can. And I guess that's my best advice to you... be greedy, be stubborn, be angry over sad, and try to be a glutton in what you can enjoy to keep your mind off that which you can't. We'll never have what used to be back... and the more we mourn that the more we miss out on what's right before us that we can enjoy.
    I'll take it. I don't need the gorgeous woman part, I'll kindly settle for average or below average. That reminds me, after like 20 years. My female cousin was here and gave me a kiss on the cheek. I was like wow that's amazing. It felt so nice.. Human contact is very underrated. Anyhow SCI is difficult for everyone.. Best regards
    "Life's a Party and Your Not Invited"

  10. #20
    A few years ago I went beyond depression to a state of numbness. I have been doing bed rest for almost 5 years. I only get out to see the doctor and whatnot. I have had four ileus's in two years. The good thing about these ileus's is that I usually didn't go to the hospital until late night, which gave me a chance to see the stars for a few minutes (until the stretcher gets loaded into the ambulance). So what keeps me going? An irrational fear of death and a vain sense that I might have something to offer humanity (something more than a "That's what she said" joke). There are a lot of things that I would like to be doing (more productive things), but being the slacker and procrastinator that I am, I always have a good excuse why the timing is wrong. I keep busy by entering contests online and playing games like Words with Friends. Anyhow, I don't know if this helps, but my advice is to find something fun/fun-ish and delve into it, to distract you from the doldrum that you're in... before you fall deeper into the rut.

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