I'm afraid people will think my comments on mourning won't be welcome because it's my Mom who is the quad and not I, but I see her loss and how it's affected her as my mom, as the woman she was, as the person she was, and I think she mourns that loss.  Or maybe I just mourn for her.  She was the kind of person who loved to travel, try new things, eat strange foods, sip wine, meet interesting people, experience unknown adventures, listen with compassion, offer great wisdom and encourgement, a fun sense of humor.  She was generous, kept the place running, organized, together.  She was 71 and fell off a bed while trying to turn on a ceiling fan (all those years of "Don't jump on the bed, you'll fall and hurt yourself" has come back to haunt her.)  "After the fall" she wasn't Mom anymore, Gwen was gone and someone else was there, and I haven't gotten to know her as well because she lives so far away.  She doesn't like to talk on the speaker phone very long and besides it's not very private; she doesn't like to use headsets; will NOT use any type of voice activated device; nix on any computer sitck or aid, NO DRAGON program!; no IPad; NO trips out, unless it's to a doctor and is absolutely required, I'm talking no further than the driveway; no calls before 11am, between noon and 1pm, between 2pm and 3:30pm, between 5pm and 6pm, between 7pm and 8pm, after 9pm - and that has to be translated from their Pacific time to my East Coast time.  When asked "Where does this kitchen towel go?", she replies, "I don't know, I haven't been in my kitchen for 9 years."  "How does this part attach to the wheelchair foot rest?", she replies, "I don't know, I can't see down there."  "What would you like us to make for dinner?", "I don't know what we have in the pantry, it's not my kitchen anymore."  My Dad's not handling the money/budget well because Mom was the one who did all that.  She paid the bills, moved the money, figured the budget.  She did the schedule, knew when to do and what to do, she was Dad's secretary to keep him going straight and he needed her to keep him focused so he didn't spin his wheels.  Mom quit her job the day she fell or shortly after when she realized what she'd lost.  She and I have only talked about this a couple of times, she doesn't like to have that talk.  She said that if she had known laying there that night what the outcome would have been, she wouldn't have called for help.  I told her I understood and that would have been all right.  Last December we had a few evenings alone, and when I told her I was concerned for her mental being, she said "..the last year had been really, really hard and I just didn't like being stuck in this f..ing body.  I wish I could..."  I told her I understood but I couldn't do anything to help her end it.  I could only promise when the natural time came I wouldn't allow anyone to prolong her passing.  She said she understood.  I mourn the loss of our closeness.  It wasn't just her accident that caused that, it was an arguement with my dad a couple months before when they were visiting me in NC, and my dad asked her who was right and even though I told him not to put her in that position, when they left early to continue their trip, things were not the same between us.  Her accident was two months later, and my dad and another sister took over Mom's care, and monitered communication with her, something she didn't know at the time, doesn't know the did now, and that I still wonder if he still does.  I mourn the loss of communicating freely with her, because we had meaningful, deep, honest talks, and so much of the independent me was because of those talks.  And because I've tried so many things to give her back a way to talk privately with her friends, my sisters and me, but she balks at every opportunity, I've come to accept that the first thoughts were true.  On August 24, 2002 I lost my mom.  And I miss her so much.

dear zuzu,

Your e-mail is eye-opening. And heartbreaking. It is important that everyone's story get told and yours is a voice that doesn't get heard from very often. That makes it eye-opening. And a very important story then must be told-and heard.
And it's heartbreaking because you so passionately described what you've lost and your longing for what sounds like was a beautiful relationship with your mom.
I must say that as I read it, at first I felt such deep sadness and helplessness for you. And then I felt angry that your mother for not loving her daughter fully, for being angry and self-absorbed. And then I thought about what it was like for me and what it could have been like if I didn't have a career to return to and a robust support system and, maybe just as important as everything else, a terrific insurance coverage that paid for nursing, power wheelchairs, van modifications etc.

And I have my youth (I was 33 years old). But despite all of those resources, I was filled with fear and self pity. I became severely depressed around year five or six. I don't know how I would have handled it if I was 71. My guess is that your mother may have had a history of depression-either personalized rate or family history. And as people get older, their risk increases because the BECOM more tired, and therefore more isolated. And when we isolate, we become self absorbed.

I really don't know what to tell you other than this: if you were in therapy with me, I would have you send this letter to your mother and then send my response. Better yet, hand deliver it if possible!

I am so so sorry for your loss-your anguish

Please take care and please stay connected with us

Hi, I've been paralyzed (t6-7) for 30 years now. When I was injured a little before 16, I had my life ahead of me and when they said I'd never walk again, a few images passed through my mind of things I would never do again, and that was sad. But my whole life was ahead of me. I was college bound and my life would be based on me, my brain and not my body, so I actually made the rehab folks mad because I didn't get depressed. Even had to do an MMPI to prove it. 

I was young, naive and had no inkling of how a chair would change my life. And it effected me more in my social life than with physical barriers. It was way before the ADA in rural W. Montana and not much was accessible, but if I had to get in to someplace, usually folks (strangers) helped. Friends just closed me out of their lives. "it is too hard for her..."

During college I went to Australia for a year abroad and was successful with that. Started two Masters programs and were it not for lupus, I'd probalby be successful in my carreer and have some friends.

I was always independent, not a follower, so being alone didn't bother me when able bodied people looked or turned away. Now, 30 years later, all my realatives are dead, and friends that were so-so are no longer in the picture. I'm alone. It sucks.

When I was newly injured there were a couple of Vietnam vets at the hospital for pressure sores, and they were really cranky. I didn't understand why anyone could be so angry (naive teenager). Now I do. Like your email, seeing people do things, walking on the beach, playing sports, going to friends homes or being spontaneous, those things just aren't in my realm of possibility. If I had the right kind of friends, maybe some of it could happen, but at my stage, especially with the lupus, maintaining my health is my fulltime job. And that is really hard for people to deal with, they'd rather not. I am able to volunteer at 2 things, but they are super tiny time wise. The inability to donate huge amounts of my time and get out there to meet people is a big problem. Very isolating.

I sent an email to the Reeve "ask an expert" folks today, before I found this post, asking if there were online mentoring for folks this far into their injury. Is this a normal part of the SCI life cycle? I've only met one person who has been injured longer than myself, and he's a quad and has a built in support network and really gets out in the community. Where do all the old paras and quads go? According to the stats from UAB, I have 20 more years, egads! If I've crested the peak, and now my body is doing what is natural (falling apart : osteoporosis, broken leg that won't heal, just skin and bones on my boney ischium) I don't want a nursing home in my future. I'm 46 but with an 80 year old body. 

So now I mourn what could have been 30 years post injury. Have no idea how to brace for what is to come.  And what is so hard is that up until the last few years I was still chugging along, being positive, if there's a will there's a way. I think the economy is making things darker too. Programs are being cut. Folks "like me" are part of the economy's burden. 

This is definately rambling. 

I wish there were resources that addressed these bumps in the road. It is my perception that all the resources are put on the newbies, rightly so, but the older folks kind of get left at the wayside (in my opinion). I was reading something on depression the other day, and it was saying folks who are 5+ years into it, that if they get depressed or suicidal, the genral reaction, is "of course". And in the last 3 years my reality is matching that. I have on average 3-4 strangers a year ask me just that: why haven't I killed my self, or "why are you still here". 

Maybe how or what your mourn is patially how you are wired, and part of what resources you have to keep your cup full. 

For the people around me, for family, I died 30 years ago. No achievements/accomplishments made up for being paralyzed. Friends made post injury report even having dreams about doing things with me not in a wheelchair and it tore them up. Others vocalize they want so much more in the friendship, but in their opinion, there's no way around the chair. It paralyzes them too. I can do my best pep talk and counter their misconceptions with logic, but they won't allow me to be a whole person. "You can't do...", is a frequent phrase, without even consulting me. Ultimately it says a lot about them, but where are those open minded people who don't put limits on paralysis?

For me, being injured so young, it is hard to know anymore, "what is normal". I don't know enough sci injured folks who have been paralyzed this long. Again, where are those old paras and quads to help flesh this out? 

Thanks for introducing this topic,

Shannon

Mourning the death of your life while still living feels to me so unnatural. It has been the biggest fight of my life. When I wrote to you about my anniversary celebration it was with a heavy heart. For me, I have to celebrate my anniversary because it allows me to reflect on the night of my accident and to see how far I have come. It is also a way for me to selfishly remind those in my life that I am still here, surviving, living in a broken body. It is the one day a year they all think of me and my family and what we have been through. As the years go by I am sure that will change. As far as the mourning process goes, I too was suicidal at first. When I first woke up in neuro icu I begged to be let go. I was on a vent and couldn't talk so my husband brought in a white board. My hands were very week but I kept writing that I had a rights, I had a living will and that I wanted to die. It wasn't until my husband brought in a picture of my two very young children that I wrote Fighter. I have never looked back. I had no idea what the future looked like but what I did know was that they still had a mother. They needed me and I needed them! As rosie as that all sounds it has been anything but a bed of roses. The way I look at it is if I am not going to try and live a life in this broken body then I should have died that night. I have bad days, horrible days, good days and great days. I take it one day at a time. I desperately miss my old life, the independence, the humanity but I cannot dwell on that or the life I have left will be unbearable. I admire you and other "long timers" for keeping positive and for being there for us "newbies". Thank you for your courage.

sushi bar....
but for real,
The day my accident happen is a new day in my life called " Life after spinal cord injury" began.  You choose to live in Heaven or hell.....after that it gets easy.....

Hi Shannon,
thanks so much for joining this discussion, I appreciate your raw honesty and openness. You bring up several issues and one of them is guidance and support for people who have been paralyzed for many years. Like you, I've been paralyzed for 30 years and I've had some symptoms that were troubling and I looked all around for someone who could tell me whether this was typical "old quad" stuff or completely different symptom. Those who have an interest in people who have lived a long time with spinal cord injury don't have answers. There are just not enough of us.
But we could start another discussion just for people who have been injured for over 20 years. I will contact the administrator and we will try to set it up.

Ultimately, what you might be looking for is human connection. And specifically, humans who feel compassion for you. Not pity, but compassion. Of course, you are no different than other humans in that we all need human connection. If we don't have that, not only are we at risk for depression, it affects our bodies.

Sounds like you had a good deal of fight in you when you were young. You describe it as naïveté, but you couldn't have gotten anywhere without tenacity.

I wonder if you have access to kindred spirits in your community? Whether or not you find it in your community, stick with us as there are lots of people who get it and who care.

Hi Dan,

Thanks for your positive response. I’d be really interested in having a discussion group for folks over 20 years injured. I browsed the different topics on this site, and found others who were at the 30ish mark and also expressing similar difficulties at this point, different issues and feelings than those when they were first injured. Typically, they didn’t receive empathetic responses and that bothered me. Do you really believe there are not that many who have made it this long? Looking at the UAB stats for longevity based on level of injury and age at injury it seems like there should be. I don’t know if folks just hole up in isolation, if they are in nursing homes, or happily living their lives.

I live in a metro area of about 1 million and there hasn’t been a strong NSCIA presence. There may be a group one year, and then the group fades, and comes back for a few months, and so on. At these meetings, the folks are usually under 5 years of injury. I only know one quad here who is injured longer than myself, but we’re acquaintance not really friends. I also find that talking about these later in life issues seems a bit taboo, whether you speak to a younger SCI, an able bodied person, or professional. They just don’t have the perspective, and a dialog isn’t formed. Professionals are usually supportive, and complement me for being in as good of health as I am, but they can’t give the “peer support”.

Ironically I’ve done peer support training through NSCIA but because of my age, I’m not called upon to help the newly injured. One person said it was because I was “dinged”, I’ve had one pressure sore and a bad bone infection. It didn’t matter that I came through that positively, the implication is that a newer injured person would be a better mentor than an aged one. I guess why I find it ironic, is that my doctors are so positive about my health, emotionally and physically, but to a SCI it is a different story.

I agree about your suggestion of needing a human connection. Over the years, folks slip away and I wonder how much the disability affects the ability to keep connections alive. One choice I’ve made consistently with friends is not to make my disability an issue. Unless there is an access issue, or I’m asked a direct question about it, I don’t want it to be an issue for them. I wonder if that is a mistake. If they knew more about it, would it help? Pro/Con: if they don’t know much about it, they make assumptions, if they do know details, it scares some straight out, and others, they not only make the assumptions, but then act on them.

Thanks again for your support. And I would really love to see a forum for this niche group.

Shannon

Gethro and I will be meeting this week to discuss this. Just keep checking back as I have a feeling we will be starting a new discussion group for people who have been living with spinal cord injury for 20 years or more

I am currently working with a young lady who has had a spinal cord injury for the last five years. Her recovery is remarkable as she is functioning at a very high level profession and able to enjoy the company of friends and colleagues. All of this despite chronic pain, the shame of bladder accidents and the inevitability of a colostomy. She has discovered happy just she never thought she would realize. Morning.

And during our last visit she was railing against the gods saying "why me". This attractive young woman is surrounded with people who worry about paying off their college loans or being able to afford an apartment or there next boyfriend or girlfriend. Meanwhile, she worries about unbearable pain, bowel and bladder accidents or whether anyone will want to go out with her. She was crying inconsolably and was furious at the injustice that had befallen her. Mourning.

You see, they don't come in logical order. Nor do we finally wake up from the darkness of grief never to revisit the darkness again. If we are lucky, over time, we are awake more than we are asleep. If we are lucky, the darkness doesn't last as long and isn't as painful as it once was. Morning and mourning are not separate things but are part of the same thing.

Hi Dr. Dan......it's been quite a while since I've posted........but I've read with great interest the posts in this thread.....and for what it's worth........want you to know I'd be very interested in your starting a thread for people who have lived with SCI for over twenty years. I think we may share some similar challenges .........after we've had that many years to live, digest,and adjust to our lives. I've continued to listen to your sage advice, and would look forward to continuing conversations in dealing with the longevity as it relates to SCI and all that that implies ! So.......I'll be checking back........I hope we can do it !My very best to you...................Most Sincerely......Norma

not to worry Norma, I spoke with the powers that be last week and he was very open to it. We discussed who should be hosting that discussion and how to involve medical expertise. I am having another discussion with him later this afternoon. It will happen we just don't know when it will happen or what it will look like. But it will happen soon

Hi Dan,

Good to hear that this will be happening. I look forward to seeing it up and running :)

Thanks for helping us with this,

Shannon

They ruled his death a suicide this weekend, but I'm not sure anyone will ever really know.  If I'd been the official decider I think I'd have ruled it an accident.  Danny Cox, 19, lived in Petaluma CA, the same town as my Mom does, and he died August 7th in a single car accident on Hwy. 101 near Novato when his car, that was going around 65-70 mph, hit a large tree on the side of the road.  He was a quad, having been injured in a shallow dive accident in August of 2010, just a week short of a year when he was killed.  He'd only officially been driving a couple of weeks in his specially adapted hand controlled car, and he'd only been out a handful of times on his own.  He had a family that had given him enormous support, encouragement and help after his accident.  His sister had dedicated herself to him and his recovery and rehab; his family had designed an accessible apartment for him at their family home; and with the help of community fund raising events he'd been taken to Panama several times for stem cell treatments that weren't even available in this country.  He was loved by many people, most of all by his family, and he loved them.  Danny was strong, young, daring, motivated, focused and he had worked hard to build his strength, muscles, coordination, balance to regain as much function as he could after his accident left him with little movement below the chest level.

Most people drive on 101 at speeds above 65 mph.  Having just begun driving with hand controls and having driven over two years in a regular car, it's very possible that his car suddenly swerved or he had to make an evasive move or he realized he needed to reduce his speed, any number of things that caused him to react in the reflexive way he would have before his accident.  When he did, the car didn't respond the way he expected because his body didn't act the way it used to, and the car didn't function the way it had before either.  In a split second, before he could react to the error and change his actions to work the hand controls, the car was into the tree with Danny's body inside, his soul free from its entrapment in a body that so restricted its movement.  

I was stunned by the news of his death this summer, hurting horribly for his dedicated family and friends.  It wasn't how the story was supposed to play out.  It leaves questions, doubts, worries, concerns.  And now the official ruling - suicide.  I wonder.  Mourning early this morning again.

So much for sharing this heartbreaking story. How many of us have thought while driving adapted vehicles that it would take so little adversity on the road to create a harmful accident? And how many have driven while severely depressed and have had thoughts like that? It doesn't have to be either suicide or accident, it can be both.

For those of us who drive and for those of us who have driven while depressed, this is a heartbreaking story. And my heart goes out to everyone involved – including you

Hi Dr. Dan,
Any update on this discussion starting?  I'm another longtermer that would be interested.
Thanks!

hi Mary
thanks so much for the reminder. I just sent an e-mail to the powers that be up in North Jersey and I will post the results. Alternatively, you could send me an e-mail either through these pages or at my e-mail address:DrDanGottlieb@aol.com