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Thread: the feeling that I cant stand this anymore

  1. #21
    Senior Member poonsuzanne's Avatar
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    Originally posted by glace:

    I just like to know : how do we find the balance ? At what point as a parent will we say this is what it is, and we have to learn to live with it for now. And in the meanwhile hope for a cure.
    Andrea
    Andrea,

    I find it hard to define "how do we find the balance?", therefore, the following only reflects my own personal opinion, it may not apply to others as different circumstances exist in different cases.

    As a mother of a family, we are like the infrastructure of a building, for example the Empire Building. We are built to support all the weight on top of us, but we are not built to collapse at all. In other words, in times of adversity, when we behave strongly and positively enough, it brings hope and stability to all members of the family. On the contrary, if we behave in a weak and disorganized way, it will further deteriorate the whole impact of a situation.

    I consider we are a bit luckier to accommodate this utter disaster happening in this decade since, thanks to our pioneer neurosurgeons/neuroscientists e.g. Dr. Hongyun Huang, undeniable evidence shows that regeneration and remyelination of spinal cord in humans is possible. Applause to Dr. Huang and all other doctors who have brought us definitive hope while leaving no room for subsequent arguments.

    I remember very well that when this SCI issue first squeezed its way into our life, our family were completely ignorant about it. The worst part was that all doctors in Hong Kong, who came our way at that initial stage, could only speak from their old text books which said that neurological regeneration in the spinal cord was impossible and wheelchair would be part of our entire life. They totally disregarded any sense of responsibility in saying so, perhaps their medical knowledge with respect to spinal cord regeneration was only up to 1906 when Ramon y Cajal won the Nobel Prize for "proving" the nerves in the spinal cord could not regenerate.

    Richard was injured at T12 on 22nd March, 2002 in Japan. He underwent an operation while his father, younger sister, Rachel, younger brother, Roderick, and I were flying desperately on the way. Richard and I spent three weeks in the University Hospital of Yamagata before he was sent back home to Hong Kong by private jet. Then we spent two months in the MacLehose Rehabilitation Centre where the programs offered were only based on how to adapt to a SCI life, no mention of weight-bearing treadmills, stimbikes, learned non-use, activity-based recovery programs, project walks or whatsoever, let alone the mention of stem cell research etc.. They even discouraged Richard when he had made some significant progress in bowel/bladder management. Three months on from his injury, there was not a single word giving us any gleam of hope of recovery even to the least extent. While we were still at the stage of "denial", Richard and I jumped from information to information, doctor to doctor and rehab centre to rehab centre in search of something that could possibly convince us that "this is not what it is". Had I known earlier that there were tremendous advanced rehabilitation therapies and tons of research work leading to a cure, my approach would have been different; I would not have allowed Richard to quit school for so long - a year and a half.

    Having digressed so much, I should move back to the original issue, I want to tell all mothers that we must stop crying because we need to maintain extremely good health in order to "balance" all the weight on our shoulders. A good sleep is most vital to good health. Try to think and act positively and get a good sleep every night. I know it's always easier said than done, despite all that. However, we must disguise our feelings and perform like a super bionic woman on stage...

    About your concern to your older son, Andrew, I'm sure you can spend some quality time with him as usual. That's what I am doing with Rachel and Roderick. In turn, everyday, they spend a great deal of quality time with Richard.

    Suzanne.

  2. #22
    Suzanne, you write beautifully. I am so impressed. I agree with you.

    Injury does not merely happen to a person. It happens to a family. Everybody is affected and the impact is much greater than people realize. People with injuries are more likely to accept their injury but parents often do not and cannot. For example, long after their son or daughter stop coming to the Open Houses at Rutgers, the parents continue to attend with hope in their heart and tears in their eyes.

    There is no equipoise for parents. I have a close friend who has a son with spinal cord injury. She is very close to her son. He has been away working and speaks to her on the phone regularly. She described how she feels shocked whenever he comes home. While he is away, her image of him returns to a non-spinal-injured state.

    I worry about fathers. Very often, they cannot express their grief. They cannot cry or tell their son/daughter or wife about their feelings. Many fathers become seriously depressed because they have no outlet for their feelings. The emotions often redirect themselves in the form of anger and avoidance.

    Wise.

  3. #23
    Wise: "I worry about fathers. Very often, they cannot express their grief."

    What you say is true, for most fathers. In this thread, so far, the only other post by a male was Chris. I don't know why this is, could it be that men don't do well at expressing feelings, and therefor people don't even pay attention to or embrace a father in pain. About a week or two ago, in a heated discussion I had mentioned some of my feelings on my son's condition. Strange as it may seem, the only public acknowledgement I received as a parent in pain was from Acid. I did receive a private topic that invited me to the caregivers forum, which I thought was very nice. The others brushed my comments aside and continued their attack. I am not here to post on Acid, as I see you have started a new topic for that.
    I was a single parent of an otherwise healthy 15year old in Jan. 1998 when he developed a condition called Transverse Myelitis. We were told that 33% go on to have a decent recovery, and that it would take much physical therapy and we would not know the outcome for some time. In the first few months we looked for signs like a toe that he could wiggle or push his leg down. In the beginning we were very hopeful and that is all we wanted to accept. I put him on an exercise bicycle and saw that he could push his foot down but did not have enough momentum to bring it around again. I thought about it for a long time and realized the flywheel was that of a free wheeling type. I fixed that by putting a bolt thru the chaingear and flywheel so he would benefit from the flywheel. I remember vividly the first time he was able to keep the pedaling action going. Another thing was that I had to tape his feet to the pedals with an ace bandage so they did not fall off. This was great, we thought he was going to walk again. Then he reached a plateau and very little gains were made. The most depressing was when the physical therapist suggested he discontinue therapy as he was not making any progress. By this time, I beleive my son was already accepting the idea he may not walk again until a cure could be available. I was not ready to accept that. Putting the bike together and driving him to physical therapy 3 times a week was actually taking care of my needs of parenting. Also, it did kinda say that we don't like they way you are.
    Finally, I accept where my son is. I do admit, I still have my moments, but, I cannot let him see them. I will point out, that we still keep our eyes and ears open to hear of a cure. This acceptance has come from going to the abilities expo. There we saw other people in wheelchairs laughing and working the booths. They openly talked about cathing and other personal issues. He saw other people that were coping with sci. For me, it was the first time I didn't notice the WHEELCHAIR, but, only saw the person in it. If I could sum it up, I would say that when he came home from the hospital, I was overwhelmed. I did not know if I had the right stuff to take care of him. As, time went on, it became a routine. In the early stages we still had hope and that carried us to the next day. Now we still have hope for a cure, but we realize until then we have to get thru today. I don't know how to say this, but, I think my son appreciates life more now then before.
    bob

  4. #24
    Senior Member lynnifer's Avatar
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    I have Transverse Myeltis too - afflicted at age 12, I'm now 31.

    I applaud your efforts for your son. My parents had the opposite affect. We never spoke of what happened. I went back to school full time and everyone just assumed that I was young and would recover. When I felt sad, I remember trying to speak with my mother and it was met with, "No one will want to be around you if you talk like that." My father just couldn't talk about it at all, avoidance as Dr Young states. In fact, he said it was probably "something I got into." I never forgot that - even though there is no concrete cause for TM - it was still my fault. It happened while I was visiting my sister so I couldn't mention it for 15yrs without her leaving the room with tears in her eyes. My eldest brother couldn't accept it and we actually stopped speaking for 13yrs, after he called me a cripple. He said I didn't try hard enough. My other brother could only muster the courage to visit me in the hospital once. My friends were all 12-13yrs, I could no longer relate to them.

    None of them were there in the hospital at night, when it's just you and the ceiling. Every night I tried for "just a toe wiggle." Nothing.

    I never found them very supportive. I had grown up on a farm in a small community. Being in hospital for three months was my first exposure to career-oriented people. I expressed interest in wanting to become a social worker, occupational therapist, etc .. it was all met with, "You can't do any of that." When I wanted to go off to university like everyone else, my parents would not pay and assumed I could not handle it. Deeply angered, I left home at 18 and did not speak to them for quite some time. My mother died 7yrs ago. I see my father maybe twice a year. None of us are very close at all.

    Following the example I had, I never expressed my feelings. This haunted me into my later years and into my relationships. It all came to a crash last year.

    I was dealing with a chronic pressure sore, the threat of job loss and an important long-term relationship ended. I remember sitting in my apartment and never hearing silence scream so loudly into my ears. This was my payment for shutting everyone out and I just wanted to die ..

    I ended up with an excellent psychologist for eight months. I should have had that at 12yrs.

    Things are better. It's been a long road. I didn't mean to get so personal.

    I just wanted to applaud your efforts on being so involved with your son. I hated my parents for validating "the stereotype" the I would never amount to anything.

    As a footnote, out of four kids in my family, I am the least to accept help financially from our parents while the others have borrowed thousands throughout the years. So much for their stereotype.

  5. #25
    Senior Member lynnifer's Avatar
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    I almost forgot!

    The one true positive was that I played in wheelchair basketball as a teen. That was one thing they allowed me to do, but I couldn't travel with them as they were mostly 40yr old men, and I was a young woman.

    I think that is where I got the strength that allowed me to persevere. Seeing these men with families and lives and jobs etc was more impressionable than the worst dysfunctional family. I had some good roomates in the rehab hospital as well who provided encouragement. They were more instrumental than they will ever know.

  6. #26
    Lynnifer, I feel so badly for you with the lack of support you had from your family. I cannot imagine the emotional pain and sorrow you had, with no outlet. Spinal cord injury is hard enough, even with support.

    You should feel very proud of yourself, for being so determined to do well. You have a good job, and sound completely independant. You have done very well.

    I am glad that you finally got to see a therapist. I think they can be of great help. What part of Ontario do you live in? My daughter, Karen, lives in London, Ontario.

    Good Luck, Lynnifer. I am proud of you.

    Darlene

  7. #27
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    lynnifer, wow, what an incredibly strong woman you are! your account will bring hope, peace and courage to many.

  8. #28
    I would like to ask Jesse's Mom if the responses she got has helped in anyway, and if so, what did she hear that has helped. It's nice to hold a little passage in your head at times of need. It can help you get past the hard times. It's must also help just to see that people tried to help and you were heard.
    bob

  9. #29
    HI, Bob,

    I'm not Jesse's mom, but I can share with you that just knowing there were other folks out there who were going through or had gone through what we had was a solace. It's been said before, and is so true, that your friends and family don't/can't understand truly what it is like for you as a parent. Just as we can't truly understand what it's like to sit in that chair day in and day out.

    But hearing others' stories, sharing the same feelings with them that I had had, gave me a sense of 'commonality' that was missing before I joined these forums. I was never able, while Matt was in rehab, to join in on the family groups; I couldn't bear to hear of another's pain, I had enough of my own.

    I think (hope!) that when new family members come on board saying 'this is it', that they'll be at least a little reassured that things do get better - maybe adjustment?; maybe the pain just becomes chronic and is not acute anymore?; maybe we learn to deal with it a little more.

    I'm not sure that there was ever a defining moment for me that turned my grief around a little; a combination of Matt getting stronger physically, our ability to find competent help, and the support of the community here, as well as knowing we have people like Wise fighting to give our loved ones a chance, probably all contributed to one day waking up and seeing just a little sunshine, just a little glimmer of daybreak.

    _____________
    Tough times don't last - tough people do.

  10. #30
    Senior Member Jesse's Mom's Avatar
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    It has helped in a sense that I was heard and people did try to help. I knew there had to be many out there reading my questions that were going through or went through what I am . But right now I think that the only thing that is going to help me not feel this desperation I feel each morning when I wake up and each day that goes by is Jesse's voice with a little more laughter behind it, a little more enthusiasm for life. Even sometimes I feel selfish because he does have alot going for him, but right now it is something that has got its hands around my throat, sometimes squeezing the life out of me. I am very, very thankful for this site. I absolute love it and read and re read everything. It does help to know there are other people going through this, not just me. And people taking the time to offer their support...yes, that is great. I watched a church program on TV this morning because we are having this snowstorm in MN today and I cant get out. His sermon was all about being grateful so that was a little bit of an eye opener for me.It is what it is and this ratting around the house doesnt help. Be thankful he has what he has. That helped. I will order the video and send it to Jess although he goes to church regularly and I think he has had that sermon preached before. I think the one thing that marmalady said rings true. No one but people going through this can really know what it is like. I had one couple, one week after Jesse's accident, call and want us to go antique shopping just to get away from the hospital and another friend tell me to get out of the hospital for a while and tour Houston while I was there. RIGHT!! They just dont have a clue. And I have good days and I have bad days as I suppose everyone here does. The day I posted that was probably a bad day. Today I feel good. Thanks for all the words of advice. I appreciate it so much. What a good place this is to come to.

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