When does the pain subside?

[Wise Young]

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.

[KDK513]

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

[Wise Young]

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.

[KDK513]

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.]

[Sci Mom]

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! http://sci.rutgers.edu/forum/images/smilies/smile.gif ] 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.

[KDK513]

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.]

[KDK513]

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.

[Stick]

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.

[Scorpion]

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

[KDK513]

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.

[Scorpion]

My Dad & Mom would probably be willing to converse, via email, phone, or otherwise, about their experiences with me if any of you think it might help you. I was injured in October 1990, and I moved out on my own in May 1995, so I know they have a wealth of info and experience to draw from. I haven't told them about these Boards, because they rarely go into Message Boards, and frankly, I discuss aspects of my life here I'd rather my Mom not stumble upon (sexual stuff, etc). She's got enough to worry about without reading intimate details about my erection. http://sci.rutgers.edu/forum/images/smilies/smile.gif But if any of you want to contact them, I can give you email addresses or a phone number if they don't mind. KDK513, my folks live in Cincinnatti too.

~Rus

[Sci Mom]

Stick, your account was accurate, moving and incredibly eloquent. Thank you for putting all those thoughts and feelings into words for those of us who aren't quite so good at it http://sci.rutgers.edu/forum/images/smilies/smile.gif

You asked "where were you when you got the phone call?" I agree...that was bad. It was 8:30 in the morning and we were getting ready for work. My husband [also a step-dad] was panic-striken; I was calm, but scared to death, wanting more information. The hard part for us was that no one "official" contacted us; my daughter and her friend were in the car. We were told by the school superintendent who happened to drive by the scene that one girl was taken to the hospital 10 minutes away, one girl was airlifted to the hospital one hour away. That was bad...not knowing who was who. It took an hour to find that out.

We still turn to each other once in a while and say, just about at the same time, "I can't believe this has happened to her"....

[KDK513]

Scorpion: Are you also from Cincy or have your parents recently moved here? It is a very nice place to live contrary to what you may have been reading. I think my e-mail is in my profile, I can pass on my phone number if you'd like. I was given many contacts when this first happened. This is a popular way for people to help. I tried to call most everyone and some were very helpful, others not. I think your parents would like to respect your privacy, but it's funny how modesty and privacy have become less of an issue.

Dr. Young: it is a wonder we can allow our children out of our sight much less engage in high risk activities like driving across town everynight in the summer.(my house) Wrestling, yep, now there's one. I used to compete in springboard diving and my Dad would sit on the farthest end of the pool so he couldn't see how close I came to the board. Has your son ever considered golf, that's the popular sport in this house. Are you temporarily empty nesters now? Thanks for the Kegel info... I must get back into a workout program.(all kinds)

[This message was edited by KDK513 on September 02, 2001 at 11:17 PM.]

[martha]

First, Stick, whatever you do now, you should stop it and become a writer. You have a wonderful way with words and expression that most of us will never master.

INFORMATION is the thing I wanted. My husband was taken to the county hospital. When I arrived, there were probably 100 people in the waiting room, but they put me in a private room alone. That was an indication to me that we were in trouble. I was in there for 2 hours before they came to tell me anything. Every time I poked my head out to see if I could find someone to talk to, someone would come poke me back in. Your mind can conjure up a lot of images in 2 hours. I understand they were busy and I prefer they work on him rather than worry about me, but it would be nice if someone could be available for status reports or at least to tell the family that the patient isn't dead.

We're too new at this to know if the pain ever goes away, but somehow I seriously doubt it.

What has kept me going? This forum, a very dear "old" friend and a wonderful "new" friend, both of whom lend an ear or a shoulder as needed.

martha

[Sci Mom]

Your story made me think back to our reception at the hospital. We too were put into a "private" room...ALWAYS a bad sign! But thank goodness, at University of Michigan, they employ social workers who help out in these situations. Ours was Ellen; I never saw her again after that first day, but I continue to think of her as our angel. She greeted us upon our arrival, stayed with us to talk, went to see doctors and our daughter, and reported back to us, found out for our daughter how her friend was [who was taken to a different hospital], got us a room at the hospital's hotel, brought us coffee, and was just a blessing. Your hard experience made me think of this, and how lucky we are to have such a good facility nearby. Wherever Ellen is today..I'm sure she's making some poor family a little more comfortable.

[Scorpion]

KDK513: No, I'm not from Cincinnatti, though I was born in Columbus. Most of my family on both my Mom & Dad's sides live in Ohio or Florida while I live in New York, and my older brother in Colorado. My folks grew up in Fairborn (near Dayton), and they moved to Cincinnatti in 1997 because they wanted to get back to Ohio. I'm not crazy about Ohio, but I'm partial to the South having lived down there most of my life. I'll give my Mom your e-mail address. I know she's always willing to talk with others who have family members with SCI.

As for modesty and privacy, I think I'm a bit of an odd duck. In the hospital and rehab, you lose so much dignity from day one, I was constantly fighting for every little bit I could salvage. I drove nurses craxy by asking for simple things like pulling the curtain because I didn't care to be naked for everyone in the hall to see, or asking to close the door while I sit naked on a shower chair, visiting hours not over yet. And since I became independent with my care, I made every possible effort to make sure my Mom wouldn't have to see me naked anymore. http://sci.rutgers.edu/forum/images/smilies/smile.gif It's no big deal for her, as Moms can handle everything from pee to crap, even if it is their grown son. But every bit of privacy I can hold on to regarding my parents helps me feel just a little more 'normal.' Also, it's kind of like George on 'Seinfeld' said, there are two worlds of Rus--Family Rus and Friend Rus. I'm not phoney in either, but I'm a lot more foul-mouthed and 'worldly' around my friends, and even though my folks aren't really that conservative anymore, I still have a respect for them where I rarely use foul-language around them. But, I guess the bottom-line is, I sometimes discuss things on these boards like my fears, concerns, dealing with a lack of a love-life, etc, that my Mom doesn't need to be burdened with. My folks worry enough about my happiness without having to see my constant struggle with it. Does that make any sense?

~Rus

[KDK513]

Rus: your reply makes alot of sense. I do understand that stuborn need to be independent. It is a trait that has taken you very far (literally and figuratively) and most likely gives your parents a sense of security about your future without them, though I'm sure they miss you terribly. Participating in this forum is forcing me to think about my life a bit instead of keeping myself so busy I don't have time for reflection. I haven't done that in a long time.

Martha: you sound as if you waited at the hospital alone. How frightening for you. How is your husband today, his pressure sore? It's exhausting worrying every moment isn't it?

SCIMOM: Has your path crossed with Dr. Austin Nobunaga? Until his recent return to Cincy he was at the University Of Michigan. He is my husbands' new Physiatrist. One of my daughters closest friends will be attending Mich. as a freshman in their Nursing program. Have you given any consideration to your daughter rooming with a PT or OT major? I understand this is a difficult subject for you, but the thought just occurred to me and I thought I'd share. Have you been to the Les Cheneaux Islands? Our last family vacation was spent there. We enjoyed ot so much we had intended to return the following year. Oh well! Kathy

[Sci Mom]

Rus~I just have to say that I admire you, your attitude and your determination very much. You sound very "together" and I'm sure your parents feel some comfort in seeing you be so independent. After all, that's our job: to raise independent, decent people and turn them loose in the world! http://sci.rutgers.edu/forum/images/smilies/wink.gif
Kathy~Yes! Dr. Nobunaga was the doctor who admitted Bri to U of M's rehab floor. He saw her several times, but her care was passed on to a new doctor about two weeks or so after she was there. I liked him very much. Your daughter's friend is going to U of M or Michigan State for nursing? The idea about rooming with a PT or OT is interesting...but would they practice on her all the time? http://sci.rutgers.edu/forum/images/smilies/biggrin.gif

[KDK513]

We are approaching the 2 year mark... does it get easier or harder?[This message was edited by KDK513 on September 04, 2001 at 05:10 PM.]

[This message was edited by KDK513 on September 04, 2001 at 07:36 PM.]

[This message was edited by KDK513 on September 04, 2001 at 07:37 PM.]

[KDK513]

After 20 months my husband bathes and dresses in about the same amount of time as before SCI. He works, he drives, he can be left alone for extended periods, he sweats, he coughs - we do not take these things for granted - 12 months ago this was not the case.

Some of the accomplishments we were hoping for by now seem beyond our grasp. In some ways it gets harder, hopes dim, we've begun to settle. UTI's hinder recovery and therapy and cause setbacks that are tough to deal with. You hope to feel better with each new day, but you don't. Sometimes it is harder to motivate. Kathy

[This message was edited by KDK513 on September 04, 2001 at 05:43 PM.]

[KDK513]

I hope others will share their initial feelings and reactions upon learning of their loved ones injury. I think it helps us all. It seems we all felt fearful of the prognosis; moreover, many were wrongly told not to expect any return of function. Some anxiety could have been aleviated with periodic reports to those waiting and information was needed. What else? Was your experience the same or different? Kathy

[marmalady]

KDK,

I'm not by ANY means standing up for neuro/ER docs who don't give any hope of functional recovery; but - that's not their job, or their field of expertise. Their job is the immediate 'fixing' of the structural injury.

I think we all had the same experience in the ER and early hospital days with our family members; it really seemed that there WAS no hope. But I understand that the acute care docs really, really don't know how much, if any function is going to return.

We certainly saw enough 'miracles' when my son was in rehab, of his own recovery levels, and recovery levels of other people on the unit.

You're right, also, in that hopes do dim with the passage of time and setbacks - but, we try to remember where we were a year ago - two years ago - or when my son was in the ICU in critical condition, with a collapsed lung. So much is better now than then!

I find myself living a very ZEN existance - only living in the present, and not thinking about the future too much - or the past.

Jackie http://sci.rutgers.edu/forum/images/smilies/wink.gif

[kate]

I was lurking around the archived forums, trying to remember how they appeared when I first came here a couple of years ago, and found this one.

If you're new, here's wisdom. This was the set of posts that gave me a sense that I wasn't alone--that in fact I was in company with some astonishing folks.

k

[marmalady]

Thank you, Kate! I was thinking about this topic the other day. http://sci.rutgers.edu/forum/images/smilies/smile.gif

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

[KDK513]

Gosh Kate, that was painful to look back. I am so focused on getting through today that I seldom take time to reflect on all that has passed.

[LauraD]

WOW Kate, this is amazing. Thank you for bringing this up. I looked through a lot of old posts when I first started here but I missed this one. You are right, it makes a person know that they are not alone in this.

Thank you.

[Sci Mom]

Man....what a trip down memory lane. Stick's post still makes me cry.

Vicky

[SoulMate]

This thread is wonderful! I'm so glad Kate bumped it up. I agree, Stick made me cry also.
Speaking as a 'significant other' who is a little over a year post, It's good to know that things do change.
What seems to be the most painful for me is having to come up with a concept of 'romance' that doesn't make me feel so g.d. depressed! Here I am wanting to be supportive, helpful, kind, understanding.... and watching a process that makes me feel so much awe and respect. ( My bf truly is inspiring. He doesn't realise just how strong he is. ) And at the same time, I feel like a helpless,glorified madication aid.
Believe me, I do understand that affection is not a high priority. When I feel lousy, the last thing I am is affectionate! I honestly am impressed that my bf can even be CIVIL considering what he deals with DAILY. My problem, or my pain, is that I can't seem to see past the CURRENT situation.
I am filled with doubt about most of the relationship beyond the daily support and care involved with the SCI. It has engulfed and over shadowed everything else. This just breaks my heart completely. It's not FAIR and it's NOBODY's fault.
None of that matters much tho' when I feel like a worthless piece of crap for what I'm feeling. I'm just wallowing in the loss and the doubt that things will ever be different. Trying to let go of outcomes as far as his physical rehab AND as far as any semblance of a 'traditional' romance for us, is just draining. I feel like I'm standing alone with this emotional pool of love, desire, and dreams that has no outlet and nowhere to go.
I'm not accustomed to being almost invisible unless it's close to time for meds. (he is not able to take them responsibly. we decided to keep them locked up and I get to dole them out as scheduled) It's hard. I get pretty hurt and I don't even want to be around him because, he just doesn't seem to notice if I'm there. My ego gets bruised badly. Then I feel like a jerk. It's a rollercoaster and I want to get the f&*k off. I'm not very impressed by the negative aspects of my personality that this situation has brought to light. I'm disgusted. The man that I so love, and admire is struggling to get out of bed on his own every day, and I'm pissed because he's not giving me enough attention?!?! Aparently so.
He wants to go places but, his body just won't cooperate. We went out last weekend. I was thrilled to be out of the house. So was he. Unfortunately, he spent a large portion of the time in the bathroom. He made 4 different trips. I didn't mind that much. It was just great to be out. However, he was just crestfallen. All HE wanted was to take me somewhere special and have a nice dinner. Instead, he feels humiliated. This made my heart ache and I felt so bad for him. it's the helpless feeling that bothers me the most. Sometimes I think we are both left with nothing but apologies for each other over how this is such a bitch of a situation. God! I love this man! He is my hearts desire and I've never enjoyed anyone elses company the way I enjoy his. Now, this f*&king SCI is all we ever deal with.
I just know that someone will suggest this get moved over to relationships and sexuality forum. Well, whatever. This is pain, I'm a caregiver, and I want to know when it will stop. I'm trying to adjust, to understand, and there are days that I fail miserably. In my head, I can imagine that day when this will all be in the past but, In my heart there is a sorrow, and in my bones there is a weariness that makes it hard to keep pushing towards that day.
I don't have any intention of not making it past this stage without him. What scares me is thinking that no matter what I want, he'll leave. Somehow, I will lose him and it will be worse than the way I feel now. God I'm just so fricking sad, tired, and lonely. I'm out of ideas and today sucks.
Tomorrow only looks like more of the same old stuff ...and yesterday didn't live up to my expectations either! lol. When do I get past being a spoiled rotten selfish little baby?

We are all faced with a series of great opportunities... Brilliantly disguised as impossible situations.

[prttynpnk]

Every year my parents drag me to some historic spot as a buffer between them and my Grandmother.On the way home I was so excited about getting out of the car and seeing my boyfriend- I called him from every rest stop and couldn't find him. In the back of my mind I kept thinking he must be ok, my friends who work in the ER would have found me if not- don't be paranoid- he's just got the damn phone off the hook. When we pulled into the driveway, my friend who works on the ER trauma team was waiting in her car- she'd been there for 4 hours. I almost threw up right then and the feeling didn't go away for about 6 weeks.I got to the ICU about 4 hours before they intubated him and he started running horrible fevers. I can't help wondering what would have happened if I'd been home- would anything have gone differently?

[kate]

Hey, Soulmate--you're soulmate to lots of us here. Many of the feelings expressed in your post just below could have come right out of my journal a couple of years ago.

It's fresh in my head because of the book project, too. My worst "no fair" moment came during the final week Bruce spent as an inpatient at Harborview. He'd been on tube-feed for a couple of months, and he was dangerously thin. He was scheduled to have a "practice" night at home on the 19th of May, and a huge crowd of friends and relatives were in my house to widen doors and all that other shit on the 12th of May.

Our phone rang, and it was my sister telling me that our dad had just had a stomach aneurism--basically, that he was dying. So, right in the middle of that week, I had to go by myself to my dad's funeral, all the way in upper Michigan, and make it back in time to be there for the home visit.

And here's the bad moment: Three days later, my dad was dead, and I was about to leave for Michigan. I was desperate for just a word of comfort from Bruce. Anything. A kind look would have been sufficient, his hand on my hair, one touch.

We were in the rehab gym, and he'd just done a session on the Monark machine. He was preoccupied because he was going to be doing another swallow eval the next day--a huge deal for him. I said goodbye, thinking this would be the moment when he would find some words for me, and he said, "I hope I pass that goddamn test tomorrow."

I don't think it makes you a baby to want someone to take care of you sometimes. I also don't think that our significant others (sci'd or not) always get it that the tiniest gesture would suffice. I can live for days on a single glance, as long as it communicates what I need to hear.

[NANDA]

Hello everybody
I am new yet into SCI as a caregiver but I will try to describe my experience.... what do you feel???....Pain, sharp, awful, pain, anger, fear, loss, guilt, Why I did not tell him to be careful in the pool?, ( who would have thought that he was going to be in a pool when there was such a beach??? He was in an Island near to the cost of my country!!!) the feeling of complete unability to do something else, why he went to that stupid trip?, why he had to jump like that in a pool?, so much pain, that it is really better not to remember that moment, the words Stick wrote pretty much described the time in the clinic, the nurses, the doctors, the infections...everything, Is he really in good hands?? too hard to explain in words, too big to describe.
The pain is there, there always be, but hope is there also for us, that is what keep us going, I am a doctor, my colleagues gave me or my family NO hope at all, " of course there is faith" one of them said...Imagine the rest... http://sci.rutgers.edu/forum/images/smilies/confused.gif
His diagnosis at that time was ASIA A "complete".
OF course there is faith ( lots), and of course there is hope(lots), at that time my brother was just going through his awful pneumonia among other things.
Now the situation is somehow "taken care of" if you could say that... we are tired sometimes( most of it), but we love each other deeply and as Stick said we just do what we are have to, and because we want to, we are a family and we are together in this, that is for me what it means to care and love a person, being there. I now my brother will never be alone. I now I am not and never will be.
When I first found this forum I read a phrase of Dr Wise that really made such a diference for me....I wanted to believe it then with all my heart and I do believe it now and will hang on always on it... "Recovery is the rule not the exception in SCI".
Now, my brother is a 17 y.o. ASIA C C5 3 months post SCI.
I am sure also there will be a cure, dont know when, but it seems to be very close.
Forgive my english... http://sci.rutgers.edu/forum/images/smilies/wink.gif
Best wishes to all,

NANDA

[marmalady]

soulmate, there's no way your post is getting moved; you're a caregiver, and the issues you brought up are so appropriate here; we all want to be nurtured and taken care of, and have our hurts healed, too.

So, know you have a home here, that's what we're for ((((((((((HUGS))))))) - Jackie

PNP - quote "I can't help wondering what would have happened if I'd been home- would anything have gone differently?" Don't go there, sweetie, it doesn't do any good, and just ties your stomach up in knots. We can, all of us, 'what if' ourselves to death; I made that road a closed road a while ago, and moved on. Our favorite expression around the house right now is, 'It is what it is'. Period. We live it, deal with whatever pitch is thrown to us, and try to move on with smiles on our faces.

Nanda - What can i say other than you're one of the most compassionate doctors I've ever met. I would feel so comfortable and cared for being your patient - even tho I don't speak Spanish!

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

[KDK513]

Funny thing, Marmalady, we use the exact same expression here, usually followed with a shrug of the shoulders. I find that smiling actually makes me feel better. Our daughter did a reearch paper which she titled the "Healing Power of Humor", powerful and amazing stuff.

[cheesecake]

Wow, what memories. Boy have many here grown over the last 2 years. Lives have changed even more, many for the positive.

To all who posted, thank you for the gift of insight. I will put it in my pocket and take it to work with me tomorrow. It is a gift I can share with others.

And Stick, how powerful, true and sad. It brought tears streaming to my eyes. Your wife is one lucky lady http://sci.rutgers.edu/forum/images/smilies/wink.gif

"A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles"....C. Reeve 1998

[SoulMate]

Thank you for sharing Kate!
Those moments when I realize that my life partner has been hijacked by SCI are still a shock and I hope I get better at dealing with them. I'm also hoping/praying that those hijack moments begin to get further and further apart!
It's a 'slap in the face', for sure, and your illustration sums it up eloquently. I'm so sorry about your Dad! My mom died unexpected due to a bowel rupture two weeks after my bf broke his neck! He barely remembers....but loved her so much! I don't really understand why catastrophe like these happen sometimes in tangent. I can tell you that I found out that I am a whole lot stronger than I thought I was!
Jackie- Thanks for the hugs and understanding that I need some encouragement to keep going! You consistently pipe up and let me know that I belong here! ((((((HUGS)))))) right back at ya! http://sci.rutgers.edu/forum/images/smilies/smile.gif
I really felt better after posting this yesterday, and I was able to talk to the bf about my feelings..... and he heard me.... and all that........ http://sci.rutgers.edu/forum/images/smilies/smile.gif So I guess, like everything else, pain ebbs and flows and that's the best we can expect. I just need to take advantage of the good and let go of the bad. Easier said, than done!
Soulmate

We are all faced with a series of great opportunities... Brilliantly disguised as impossible situations.

[NANDA]

Marmalady:
Thanks, I would be happy to be your Doctor!!! http://sci.rutgers.edu/forum/images/smilies/biggrin.gif, I just hope to be able to make a difference from now on, i have always consider that we Doctors should have limits and we Do not know everything as much as we may want to.
I will work on it.. there is much to do for patients and caregivers with this type of pathology.
I could teach you some spanish either!!!
Take care...

NANDA

[Butterfly]

Being new to SCI (my younger sister is 7 months post) I can only say that I hope it gets easier. People always think that the younger siblings look up to the older ones. That is just how it is...that is just how it works. Or does it???

She is 4 years younger than me, but I have learned so much from her. She has taught me what strength is, she has taught me what patience is, she has taught me what loyalty is...and now I am teaching her these same lessons. STRENGTH - She feels weak, helpless, inferior...but she gets up everday and goes on, a lot of the time with a smile on her face. PATIENCE - She used to teach preschool...now I am teaching her that it is okay to take 20 minutes to put her shoes on. LOYALTY - She was always someone that I could count on...now I am the one that is always at her side.

I hope it gets easier. But as I have told her over and over again and as I tell myself over and over again when I start feeling like it is too much...This has happened for a reason. Our goal is to figure out what that reason is. We can beat ourselves up over how life sucks so bad, how this isn't fair, how we don't deserve this, OR we can learn from it. We can celebrate the fact that my 3 year old little girl doesn't and WILL NEVER look at anyone in a wheelchair any differently, because her favorite aunt NeNe is in one. We can be thankful that this has educated our family and made us more aware of what others living with SCI or in wheelchairs go through. And we can cherish the fact that this has brought our family together, like nothing else probably ever would of.

There are lots of things to cry about. And I think that it is good to shed those tears. But there are also lots of things to be thankful for. My sister could of died, instead I still have my best friend to talk to.

I just try to stay positive and take one day at a time. I try and think about all of the things that she can do instead of the things that she can no longer do. And I try and do it with a smile, because life does go on, tomorrow is another day, and someday we will learn why this has happened. On second thought...maybe we already have!?

[parapal]

Butterfly,

What a beautiful note. I am 8 months post and a t-12 para. You put in words what my b/f has been going through these last several months when at times I was a major bitch and other times when we cried together for hours. While it is extremely difficult for us who have experienced SCI sometimes we don't realize that in many ways it is as difficult or more so for our loved ones. Your note brought tears to my eyes and I felt compelled to respond even though I am not in your situation, God bless you and everyone else that goes through these tough times with us. You are all very special people and please realize that even when we don't treat you right we still love you and appreciate everything you are doing more than you can ever imagine.

Love,

Cathy

parapal

[Stacey]

MY husband was injured 13 months ago. I still come to tears easily. There are hard days and harder days. We seem to have gotten into a routine, which helps a lot. The pain is still there for the both of us. I talk more about it then he does. I think, for the most part, it's grieving for the future that we had planned but will now never be. I hope to be able to get to a point someday, when it doesn't hurt so much, when I don't feel this tremendous knot in my gut.

On the good side, though, our relationship is stronger and deeper than we could ever have imagined it could be. We appreciate our life together more, and are very thankful for our children and their good health.

Stacey

[mjhopper]

It's been over 5 years since my accident. I cried alot at first, my husband with his sense of humor would always try to cheer me up. My husband does all of my personal care and he is great at it. I think that before my accident we were too caught up with life, he had his own business as well as myself. We didn't seem to have time to sit down and talk with each other. He told me while I was in rehab that things happen for a reason and sometimes it takes a tragic event to make you stop and re-evaluate your life. My husband and I now spend alot of quality time together and are constantly going places in our van and the most important things is we appreciate each other more.

MJ