http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning
Just responded to a post from Wheelchair Mama in the "view from here" topic about mourning. She is two years post injury and with the anniversary coming up, she wanted to celebrate while her family wanted to do their best to ignore the day.

I thought the issue of mourning warranted a page of its own. I would love to hear from my fellow spinal cord people and friends, family and caretaker is about the mourning process. What is it like for you? And what is the process like?
The reason I included "Morning" was that there is a time when all of us see sunlight for the first time after the accident. It might only last a moment when we feel awake and alive again, but that is the beginning of Morning. It doesn't mean the grieving process is over and might continue in its own way for a lifetime.

So what has this process been like for you – so far?

Like most, after the shock wore off, all I wanted to do was die. That was my most fervent wish/prayer to close my eyes and never wake up. The first time I saw a glimmer of daylight was about two weeks after my accident. Still suicidal, I was in intensive care when a nurse asked me to help her with her emotional pain she was suffering. I describe this in more detail in "Letters to Sam" (Sterling), but the act of helping someone else took away my sense of uselessness for that brief moment and I saw possibilities in my life for the first time. I woke up. Then I went back to sleep a few days later-but everything was a bit different.

The next wakening was about two years later. I had learned to drive and was comfortable doing it alone. During one of my hospitalizations, I befriended a nurse and asked her out to lunch. I had never done anything like this before and I was flat out scared. My wife helped me figure out how to put a pipe cleaner in my wallet so that I could get it out of my side pouch. We put my adapted pen in there and decided I could get the credit card out with my teeth. And it all worked out!

I picked her up, we had a lovely lunch with good conversation, I paid the bill with my credit card and I drove her back to the hospital where she was working. And about 30 seconds after she got out of my van, I began to cry. And I sobbed. Not for grief or sadness, but because I never thought I would ever experience this level of joy or this level of independence again. Another awakening-but this time it lasted longer.

My grief process has lasted a lifetime. 95% of the time I am so grateful that I am alive. But sometimes I watch people walking on the beach holding hands or when I go to a wedding and see people dancing, the pain can be so bad that I have to leave the room.

So that's my process. Yours?]]> en-us Tue, 15 Nov 2011 20:15:53 GMT http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=170087#tr__170087 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=170087#tr__170087 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]]> Tue, 15 Nov 2011 20:15:53 GMT Dan Gottlieb http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=169711#tr__169711 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=169711#tr__169711 Any update on this discussion starting?  I'm another longtermer that would be interested.
Thanks!]]> Thu, 10 Nov 2011 23:04:35 GMT Mary http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=169555#tr__169555 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=169555#tr__169555
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]]> Tue, 08 Nov 2011 18:19:14 GMT Dan Gottlieb http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=169505#tr__169505 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=169505#tr__169505
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.]]> Tue, 08 Nov 2011 08:58:20 GMT zuzu http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=165869#tr__165869 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=165869#tr__165869
Good to hear that this will be happening. I look forward to seeing it up and running :)

Thanks for helping us with this,

Shannon]]> Tue, 27 Sep 2011 19:06:50 GMT Shannon http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=165861#tr__165861 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=165861#tr__165861 Tue, 27 Sep 2011 18:44:47 GMT Dan Gottlieb http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=165643#tr__165643 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=165643#tr__165643 Sat, 24 Sep 2011 03:46:40 GMT nanaboombala http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=165452#tr__165452 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=165452#tr__165452
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.]]> Wed, 21 Sep 2011 18:54:29 GMT Dan Gottlieb http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=165451#tr__165451 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=165451#tr__165451 Wed, 21 Sep 2011 18:46:44 GMT Dan Gottlieb http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=163970#tr__163970 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=163970#tr__163970
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]]> Wed, 14 Sep 2011 03:23:29 GMT Shannon http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=163888#tr__163888 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=163888#tr__163888 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.]]> Tue, 13 Sep 2011 20:37:13 GMT Dan Gottlieb http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=163536#tr__163536 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=163536#tr__163536 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.....
]]> Mon, 12 Sep 2011 17:30:32 GMT CHILL http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=162628#tr__162628 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=162628#tr__162628 Thu, 08 Sep 2011 00:50:29 GMT Wheelchair Mama http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=162390#tr__162390 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=162390#tr__162390
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]]> Tue, 06 Sep 2011 23:44:00 GMT Shannon http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=160763#tr__160763 http://www.spinalcordinjury-paralysis.org/discussions/healing-the-mind-and/2011/08/16/mourning-and-morning?tr=160763#tr__160763
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]]> Tue, 30 Aug 2011 19:28:03 GMT Dan Gottlieb