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Thread: When does the pain subside?

  1. #1

    When does the pain subside?

    Over the last 20 years, I have met thousands of parents who are coping with the fact that their offspring has spinal cord or head injury. Several months ago, I was giving a talk at the NJ Brain Injury Association and sat next to a retired couple whose 35-year old son was involved in a car accident and could not remember them, his fiance, or more than 5 minutes of his life. Their pain was manifest.

    Many parents have sat in my office, years after their sons or daughters have adjusted to the injury, and they have tears when they described how they feel. The pain of loss does not seem subside over the years for parents as it does for the individual. Is this true for brothers and sisters? Spouses? Fiances? When and how does it get better?

    Wise.

  2. #2
    Senior Member KDK513's Avatar
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    Heartache

    I am going to take a stab at this question and hope I don't botch it too much. It's 2:00 am and I am still awake...hmmm. This is usual for a weekend as I have teenagers and a husband with SCI. Our 18 year old daughter has returned home for the holiday weekend after 9 days away as a college freshman. She arrived at 10:00 pm, dirty laundry in tow (I am on the third and final load)and wanted to leave immediately for a party at another college 50 minutes away. I, of course, said "no way; after all, I just worried you safely home for 2 and 1/2 hours." Being the perfect child, or, at least wise to my ways, she dropped it and settled for a video and homecooked meal. I just happened to have her favorite broiled fish and brown rice... amazing, huh? She rented a movie she had already seen that she was certain would make me laugh. (ladies you have got to see Mel Gibson wax his legs...my stomach muscles got the best workout in over a year and I now know I must start doing Kiegles <sp?> again.)

    I guess I'd better get to the point. So often as parents I know we would prefer to assume our childrens' pain and heartache and make it our own. How often have you heard the parent of an injured child say "Please spare my child, God take me instead." I often look at our children, especially in their sleep and thank God they are safe and whole and not suffering as their father does. Perhaps our prayer was answered before it was even uttered, could we have been so fortunate?Kathy

  3. #3
    KDK, I had to look it up because I have never seen the word written, but I think that you are referring to Kegel exercises http://www.childbirth.org/articles/kegel.html

    I empathize with what you say about your 18 year old daughter. I have a 22-year old daughter and an 18-year old son. My wife and I just delivered our son to college. Our daughter just graduated.

    Given all my contact with people with spinal cord injury, I am well-aware of the fact that the most common age of spinal cord injury in the United States is 19 and 80% male, my son is in the highest risk group. He is also a wrestler. I don't know what I would do or feel if either of them were injured.

    Yesterday, we had one of the largest "Open Houses" ever in our Center at Rutgers. Of about 60 people who came, a majority were parents, wives, or family members. One was the wife of a retired college professor who is on a vent with a C3 injury from just a few weeks ago.

    Caregivers are thrust in a world not of their choosing, anxious, trying hard to remain calm, and confused by the conflicting messages that they are getting. What is the message that we should be giving? What went through your mind when you first learned of your husband's injury. What did you want to know? What were you most frightened by? What would have helped you the most? What has kept you going?

    I am sorry for all these questions. I don't really get much of an opportunity to ask these questions because I did not feel it appropriate to ask these types of questions when people are in pain and still reeling from the shock.

    Wise.

  4. #4
    Senior Member KDK513's Avatar
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    What keeps us going

    It might help me get started if I attempt your last question first. What keeps me going is the belief that though we cannot control all the events in our lives, we do have the ability to determine how our lives will be affected by the choices and decisions we make. I asked "why me" 8 years ago when my husband, myself and our children were in a head on car crash with a drunk driver. This happened several weeks after our home was damaged by lightening. It was an overwelming experience yet so much of what we learned continues to impact our lives daily. I read a beautiful and inspirational book after these events,"When Bad Things Happen To Good People" and have never revisited the why me question again. I mention this because I believe this is a question most of us must ask ourselves when tragedy enters our lives. When SCI became a part of our lives I had already accepted that sometimes bad things just happen.

    The initial phone call came as I was busy with food preparations for our annual Christmas Open House. I had 'inspired' our children to help for a few hours, so the three of us were together. I was told he was having chest pains, the EMT's had just left to take him to the nearest hospital and my caller said he seemed fine. I was mildly annoyed because I was busy and assumed he must have gotten overexcited during the basketball game. (he was coaching a group of 7th grade boys)

    As time slowly passed in the ER waiting room, and requests to see my husband were repeatedly denied, and my questions about his condition remained unanswered, I finally sent our children and friends home. Then I demanded to be taken back to see him, about 90 minutes had passed. He was very agitated and was mumbling about how he couldn't feel his legs. It seemed an eternity passed before I could speak to someone about his condition. The ER was a frantic place of too few people trying to care for too many. I had to become the sqeaky wheel. Noone could figure out what was wrong as he had no sign of trauma. I asked if an MRI had been done, nope, no machine at the hospital. I could not get a sense of urgency and received the frightening impression that noone seemed to be making decisions about his care. I initiated a transfer to another hospital, so much precious time had been wasted.

    "What would have helped you the most? and What did I want to know?" Information, someone from the hospital to tell me my husbands symptoms, what the suspected causes were and what was being done. The only responses I could get were "they are working on him". Waiting family members must deal with escalating anxiety when their need to be kept informed is not met. Instead I felt like a nuisance to be dealt with accordingly.

    [This message was edited by KDK513 on September 01, 2001 at 07:04 PM.]

    [This message was edited by KDK513 on September 01, 2001 at 07:14 PM.]

  5. #5
    As I've mentioned before, my daughter was injured during her senior year of high school. She was 18, but in the "female minority" of SCI's. We had excellent care [U. of Michigan in Ann Arbor] and I cannot say enough wonderful things about the doctors, nurses and therapists there. But it was interesting because they were used to dealing with young men [who have much more upper body strength, and are easier to cath! ] The pain of watching my only child go through this experience is still very much there; it's just easier to push it into my subconscious during the busy days. The one incident that sticks in my mind: during Brianna's rehab, she worked with one very nice PT named Mike. Mike's daughter was in 10th grade and on the wrestling team. While Bri was there, Mike's daughter was in a car accident, and had what turned out to be a slight injury; she was in a TLSO, but had not lost function, mobility, sensation...she wouldn't be able to wrestle again [perhaps] but that was about it. Everytime Mike worked with Brianna, who is a T11/T12 complete...I could see it in his eyes...the relief, the absolute relief that Brianna wasn't his daughter. I was very happy for him, but I empathized with his feelings completely. I learned that you can live with a broken heart--I didn't know that was possible before.
    Kathy--reading your post about your daughter brought tears to my eyes. That is exactly what my daughter should be doing. But she's not there yet. I know she can go off to school, and achieve everything she wants, but deep down we all know that IT'S NOT THE SAME. It never will be. And at times, I very much resent people who try to "cheer" me by telling me how great Bri's life can be. Yeah...I know...but they don't have a clue how hard she works to have that great life.

  6. #6
    Senior Member KDK513's Avatar
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    What went through my mind

    My computer literacy still leaves a bit to be desired. I keep hitting the enter button and lose my post or I am timing out, too many interuptions in my day. It is probably just as well because I do tend to go on and on. I will try to finish this post and tie it all together.

    SCI Mom: I am so sorry references to my daughter made you sad. I interject stories about our children because at the end of the day, it is my relationship with them that makes my life feel normal. I did not intend to be insensitve about your dreams and losses. Please forgive me. I too know your daughter can go to college and accomplish most anything, but that the effort required is tremendous. She will, you know she will.

    Dr. Young, boy I thought I asked alot of questions... ha!

    "What was going through my mind? and what frightened me the most?" The thought of paralysis and what it meant in someones life terrified me. In an earlier post I described the Neurologists original diagnosis. He delivered this news 7 hours after I received the initial phone call. He spoke very plainly at my husbands side in the presence of my sister and brother, and my husbands twin brother. Neither my husband, nor his brother seemed to be taking it in. His brother said,"but he'll be OK, right?" My husbands response was "thank God, cause I thought I was having a heart attack." That is when I felt such a deep pain, as I looked across and saw the tears in my sister and brothers eyes. They knew, as did I what this could mean. Our next door neighbor had sustained a SCI at the age of 19, more than 20 years ago. We all three bore witness to his daily struggles, but also his fabulous achievements. I did not have the luxury of the release of tears. I had too many questions, concerns and issues to deal with. I felt numb, but knew I needed to reasure my husband that I would be with him and that we would be OK.

    Nothing prepares you for this.

    I felt real fear deep inside and an overwelming sense of responsibility to keep everything together, whatever that meant. What keeps me going is the sheer determination to hold onto some of our dreams and the desire to preserve my family and provide our children with a sense of security (even if I don't feel it). We have some new dreams now, but that's OK cause we are still evolving. We are blessed in our love for each other and sustained by the love and support of our family and friends.

    [This message was edited by KDK513 on September 01, 2001 at 09:33 PM.]

  7. #7
    Senior Member KDK513's Avatar
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    What Message?

    I am praying for the gift of brevity for every readers sake, but I do feel compelled to at least try to address your kind concerns. " the message that would have been welcomed is one of hope," certainly not false promises, simply leaving the door open for recovery would have been welcomed. We have in fact made it a point to seek out those who support our desire to remain positive.

    I gravitate toward the medical professionals that treat my questions and concerns with respect. I believe that we share the responsibility for our health and that good communication is of paramount importance. Doctor and patient must both be good listeners. Wouldn't it be so much easier to explain things if you had a simple diagram or fact sheet readily at hand? Would'nt the Dr. /Patient relationship be far more effective if the patient or family member had a better understanding of the diagnosis and treatment. Who can possibly 'get it' in one verbal explanation. Please put something written in my hand. Yes, I can search the Net, but not everyone can. Sorry, I'll get off my soapbox.

    Thank you again for your sincere desire to be a support for the SCI Community. Your care and concern gives me comfort and keeps the fear of being adrift at bay.

  8. #8
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    When Does the Pain Subside?

    My stepson is almost 25. In November of 1998, he was a sleeping passenger in a SUV that rolled twice in bad weather. He's a C5 quad now, and working hard with all of it, everything you who care for someone already know, or are learning.

    We received the phone call at 8:30 AM. The worst part for me will always be the look on my wife's face as she woke me and handed me the telephone. It's the one part, the only part, of the last three years that I still choose not to revisit. I can only crack that door and peer in for a few seconds at a time before I close the door again. There's no reason to go back to it for any longer time.

    Where were you when you got the phone call?

    Although it is my stepson that has been injured, I find myself now calling him "son." It's natural now, as natural as saying his name. But I know I don't have the blood bond my wife does. I didn't carry him and raise him from birth. I cannot imagine what it is she feels, though she has told me much of it, and much she has not said I can see and feel.

    A person said to me once, "It's wonderful that you're his stepfather and you care for him." As if because he wasn't mine by blood, I had no obligation. She was well-meaning. Don't give me a medal. Don't give any of us a medal. This is what it means to be a human being. You play the hand you're dealt.

    People say, "I couldn't do it. I couldn't handle it, what you do, what you're going through." I say, "Yes you could. You would. If it's someone you love. Because there is no other real choice. Not if you love them, and not if you want to be able to call yourself a human being." And if it was you who was injured, you'd want someome to stick their finger up your behind, too, so you could go to the bathroom. No matter what kind of life you've lived, you'd like to think you'd earned at least that. And someone who understood that it's only flesh, for those few seconds.

    No medals. Respect, room, no petty demands of our time. Be there when you say you'll be there. You don't have to make a grand gesture, or bring it up every time you see us. Just remember that it's there. If you want to help, we'd love to go out for dinner. We'll leave you all the numbers and brief you on dysreflexia.

    Treat us the same way you treat him, like you did before. Just remember that it's there.

    My wife and I do what we must do, because we love our son. We are not saints. We often dread the work that must be done, the chores that must be done to care for someone with SCI. That our son has a big heart and compassion helps, though neither is he a saint. We shout, we argue, we accuse, we apologize. We listen, the hardest thing to learn. We feel tiredness like we have never before been tired, deep in our bones. We despair -- it will never end, it will always be like this, our dreams are gone too. We grieve, still. So much has been lost, so much that could have been, for our son and for us. But we will never return to the way things were before. We don't live there anymore, none of us. Dreams are the easiest things to change, and there are plenty to go around.

    Before was life. Now it's life plus chair, and all that goes with it. You will work it out, but it will never be the way it was before. But so what? Your life changed when he was born, when she was born, when you met, when you married, when you first saw your parents as human beings, and it has changed again. It's not easy at all. But you can do it. You will, because you must.

    "It's amazing what you celebrate now," a friend of ours said, a friend who has a son who's a quad on a vent, who's much longer into this now than we are. They sewed his trach tube hole open, not expecting him to survive. Ha! "Welcome to the mother tiger's club," she told my wife when we first met. Grr. "You're a neuro doc? Tell me what a spinal fever is. Tell me what dysreflexia is. No? Then listen to me. Listen-to-me." You oughta see my wife back down those white coats. And others will forever be on our Christmas list.

    I said listening is the hardest thing to learn. For me, a man with a hammer and power tools, the hardest thing has been to learn that I cannot fix this. I can't force my son to get better. I can't force him to do the things that I think he should be doing. I have told him that don't know what he's going through, and that I would never say I do, and I don't and I haven't yet.

    Other people in chairs, they have told me that they feel it's harder on caregivers than it is on them. I don't know if that's true. But I understand where that feeling comes from, the well of experience from which it arises and the compassion that moves them to say it, and I understand that what they're living with and what my wife and I are living with are different. It's different in our hearts and intellect, it's different in our souls. It shapes us differently, it tests us differently, it measures us differently, against different scales. But my son and my wife and I share one scale against which we are measured, and that is the ability to accept and to keep compassion, and to love and respect one another, to rearrange our mental and emotional and spiritual furniture, to widen those doorways too, make them more accessible.

    There are changes that I feel happening to me still that I'm not comfortable with. I have said and done and felt things since my son's injury of which I'm ashamed. It's a truism, a cliche perhaps, but you must learn to forgive yourself, and accept that you're not a saint, you're doing the best you can, dammit. And it's easier now that it was a month ago or a year ago. Remember what it was like then? It's easier now.

    I can't fix this. That's hard, still hard. Men. Fathers, brothers, uncles, friends. You can't fix this. Home Depot doesn't have an SCI section. My son is injured. He's not sick, he doesn't have an illness. He broke his neck. Everything works, except there's this one little place where the electricity isn't getting through, not enough of it, anyway. It'll be fixed soon, I know enough now to know it'll happen, to some degree. But you can't wait for that. And what if it doesn't work for him? Don't wait for the fire department to show up. Grab a bucket. Get on with it.

    "TV remote? Get it yourself. What are you, paralyzed?" He tells me to go eff myself. We're both laughing. He gets the remote. It takes him almost a minute, and I resist the urge to get it for him. He changes the channel with his tongue. He dials the phone with it, manipulates his little digital recorder with it. He's become quite skilled with his tongue. I tell him some day, he's going to make some young woman very happy. We laugh again. "You will have a woman some day," I'm saying. How badly do you want it?

    I want the same things for my son now that I wanted before his accident. I want him to feel useful and do rewarding work, to find some happiness, to love someone. There are plenty of miserable people up and walking.

    He was in rehab, still in the halo, titanium screws in his skull. He's got a pressure sore in the back of his shoulder the size of a golf ball from the halo shoulder harness, he's got a blood infection, a UTI, he can't eat without throwing up. He's got a mild brain injury from the accident impact, he can't remember what happened an hour ago. He's weeping, I'm weeping, the curtains are drawn around his bed, the respirator is clicking and wheezing. I embrace him as well as I'm able with the halo and the trach tube in his throat. I tell him, "I would miss you if you were gone. I would miss you so much. I want to sit in your room back home and watch TV with you, laughing at something stupid we saw on TV. That's what I look forward to."

    We do that now. We fight over the remote. There's only so much "SportsCenter" one human being can take.

    Remember what it was like then? Nurses you know by name, the ones you don't trust and the ones you thank God for putting on this Earth. White walls and orderlies and bad food and visiting hours and going home, falling into bed, calling the nurse's desk in the middle of the night after waking from a horrible dream. Just tell me his chest is rising and falling. Just peek in on him. "Sorry. Just one of those things," I said, after she told me he was okay. "I understand," the nurse replied. I heard it in her voice, that she did.

    I told my wife he was okay. It was her dream. I prayed, "God, just give her a good night's sleep."

    Driving home from the airport, after flying to the hospital where my son was in ICU after the accident, I prayed, "Don't let them be scared. Don't let my wife and son be scared." I saw her holding his hand. He couldn't feel it then. I don't know if it was harder on him or on her, his not feeling it or her knowing he couldn't. I had to come home. I had to go to work, feed the dogs, pay the bills, manage the house. Hundreds of dollars in phone bills. She's eating take-out in the hotel again, twelve hours by his bedside. "How is he? How are you? I love you. Kiss him for me. Tell him the dogs can't want for him to come home." I go to work, the overnight shift, knowing that what I do doesn't matter, all that matters is my wife and son and what they're doing and feeling that very moment. I want to be there, not here. But my work does matter. Bills must be paid. There must be a home for him to return to. They can depend on me.

    When David Letterman interviewed Christopher Reeve, he asked him, "You know something now the rest of us don't, don't you?" I remember thinking, "Yeah, we do. Just don't ask us to explain it. I don't know if we could, and besides, we're too busy just now." My son and I have talked about what he knows now. There are intersections, and there are places where the roads will never cross. It's not as hard as you might imagine to learn to respect that. And you must. It is necessary.

    "This is an unacceptable situation," said another friend, a para since a 1976 motorcycle accident. "But I do, because I must. I don't like it, but I have accepted it, and I get on with it."

    I worry about my wife more than I do my son. I am proud of her, but what is that? We do what we must. I grieve for her, and there is a limit to the comfort I can provide. I can't fix her, either. Sometimes I try too hard, and it pisses her off. Sometimes she's not ready or able to accept what I have to give, what little it is sometimes, what little I have just then, and sometimes I'm just wrong. Sometimes she infuriates me, and sometimes she breaks my heart. I have to go somewhere, out into the yard, find some work, something I can put right, somewhere where I can let my pain of the moment go. Sawing wood, hammering nails, fixing something. Watching the clock for when my shift begins.

    It gets easier. The pain subsides. Like a familiar ache in your joints when a storm comes, it is always there, sometimes more sharply than others. And you rearrange things one more time.

    My wife and I, we are a planet. My son is another planet. He has his unique experiences, we have ours and like I said, sometimes the orbits intersect and there are places where they never will. But the family snapshot has all three of us in it, and he's in a chair, and we're all smiling.

  9. #9
    Senior Member Scorpion's Avatar
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    Stick, blood or not, you're a father to your son, I can see that in what you write. I can also see, just a glimpse, what my parents must have felt and still feel almost 11 years later. Of all my family, my Dad & Mom lost the most when I broke my neck. I know that either one would trade places with me in a second--they'd die if it meant I'd walk again. Yet, if that were an option, I'd never let them take it. I'd rather have their love, support and fellowship than the restoration of my body. Those of use with SCI know what few will ever--or should ever--know; yet, our loves ones, our parents in particular, have knowledge of a grief I hope to never experience. Who is to say one of us hurts more than the other?

    Stick, thank you for so eloquently and graciously conveying even a tiny inkling of what it's like to be a parent of someone with SCI.

    When does the pain subside? I don't think it ever does, not completely. But it does get better with time and love.

    ~Rus

  10. #10
    Senior Member KDK513's Avatar
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    Stick

    If it's not teenagers or a sick husband waking me then it is the dogs. They demanded to be let outside an hour earlier than usual... hope this doesn't become a regular thing. While waiting I thought to read over my post from yesterday to see if I was able to finally pull my thoughts together. Instead I read your eloquent and very moving story, what I wrote no longer matters. Your writing triggered so many memories. It felt very familiar even though your perspective is different than mine.

    The only differences in our stories are the who, what, when, where and anyone can fill in the blanks on those. Yet our caregiving roles and familial responsibilities are vastly different depending upon our relationship with the injured person. While you and your family struggled on in different cities, mine were all together in the same town. While you assumed many of the household responsibilities, at the end of the day these chores still wait for my attention. I delegate what I can, tend to most of it and ignore the rest.

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