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Thread: How do you cope with Sci?

  1. #21
    Quote Originally Posted by Mize View Post
    SCI ends the life before in a very real sense and as long as you're still looking backwards at that old life, you will suffer.
    So put it in your back pocket, get a job or volunteer but get plugged into places with other people and move forward.
    I feel like this is part of the reason why I have dealt (relatively) well with SCI. I had decided to change my whole life very shortly before I was injured. I was in my mid 20s and decided I wanted to go on a little motorcycle trip for the next year or two, so I sold all of my belongings that wouldn't fit into a couple of boxes of nostalgic items I stashed at my parents house, closed down the business I had been running for the past 4 years or so, strapped a couple bags to my motorcycle and headed out. It had always been something of a plan for me to go on a trip like that so it was in the back of my mind, and kind of the last straw was a relationship not working out with a chick I went on a few dates with. It wasn't anything serious or devestating, but I probably would have hung around and postponed plans for a few months if it seemed like it was going somewhere interesting. I crashed 8 weeks or so into my trip.

    So at the time of my injury I had:
    1. Shut down my business with no specific plan for what to do in the future when my money ran out
    2. Quit school (was several semesters on and off into a half assed college career)
    3. Moved out of my studio apartment on the second floor with no plans for where I would live whenever I returned
    4. Become/remained single (we were never really "together")
    5. Got rid of all of my stuff with the exception of some clothes, tools and a motorcycle.

    I was in such a transitional situation, and had intentionally put myself in that situation at the time of my injury that I think it allowed me to adapt to the injury rather well. There was no job that I suddenly couldn't do. I didn't have to take time off of school to deal with hospitalization and learning the SCI ropes because I wasn't currently in school. I didn't have to move out of an inaccessible apartment because I already left and had no place to go. I had no significant other to see how that affected the relationship. I didn't have a bunch of skis/skateboards/bicycles/etc other toys that I could suddenly no longer use. I wasn't in any daily routine of jogging or hiking or anything because life on the road was unpredictable and I just took it a day at a time and it was different everywhere I went.

    This and the expectation I already had before the injury that my life was about to inevitably change allowed me to roll with the punches as the forced change of life with SCI punched me in the gut. I already had the whimsical immature notion that this road trip would make me a different person somehow, and as that was what I was expecting I had a relatively vague sense of what made me "me", and realistically no long term plans for the future that were disrupted by SCI.

    Then I quickly threw myself headlong into a relatively challenging career that comes with a bit more prestige than the average (my ego probably needed that post injury) and required so much work that I wouldn't have time to get bogged down in thinking about what I'd lost and what I couldn't do. In retrospect I shouldn't have been successful (hell maybe I'm still not, but I feel like I'm on the cusp since I completely finish my training in 15 months), but it seems to have turned out pretty well so far. If I went back in time and put 10 me's in the place that I was at 11 years ago when I was injured I wouldn't expect more than one of them to make it (career wise), and I do sometimes wonder what would have happened to the other 9 after they lost that career dream on top of all the other SCI nastiness. About four years ago there was a period of time where I was almost certain my career was over before it started and that was a very, very dark time.

    Idk why I'm still typing, I'm gonna stfu.

  2. #22

    Stain glass window.

    Quote Originally Posted by Mize View Post
    I have a number of younger SCI friends and it breaks my heart all the things they didn't get a chance to do as an AB.
    BUT, one of them pursues all those things in spite of SCI. Surfing, skiing, travel and so on.

    So I think the big thing about coping with SCI is to move on. Carry the horror of what you lost in your back pocket, but don't spend time daily, weekly or even monthly looking at that loss. Put it away. It won't make things easier or better.

    I told a friend who was having trouble coping that, prior to SCI his life was like a beautiful home that he had built from the ground up, furnish and, over many years, made it perfect for him.

    SCI is when that house burns to the ground and now, with SCI, you are starting with a studio apartment and have to essentially start over and build a new home, a new life.

    SCI ends the life before in a very real sense and as long as you're still looking backwards at that old life, you will suffer.
    So put it in your back pocket, get a job or volunteer but get plugged into places with other people and move forward.

    That's what works for me.
    Good analogy and out look on life.

    I have somewhat similar one. The window that the sunshine shone in life shattered when I sustained my spinal cord injury.

    So what I did was I picked up the pieces of shattered glass, with the new life experiences and events post SCI like:

    Buying a new van to drive.
    Going back to college.
    Graduating from college.
    Doing television commercials.
    Magazine editorials.
    Featured on cover of magazine.
    Featured in magazines.
    In employment brochures promoting PWD returning back to work.
    Finding employment then job hopping to NASA.
    Being assigned to jobs on the Space Shuttle Fuel Cell Upgrade Program, International Space Station, Russian Space station, Fuel Cell projects, Glenn's Extreme Environment Rig, GEER, classified projects, Great Lakes Environmental Aerial Monitoring project, GLEAM, ARIES I shuttle replacement, Zero gravity experiments ...

    GEER



    Going back to college again and graduating.
    Employee of the year award twice.
    Death of mom.
    Returning back to college for bachelor's degree and graduating.
    Five grade promotions.
    Increases in pay.
    Better quality of life.
    Building an accessible house.
    Serving on the Lorain Advocacy Board for three 5-year terms appointed by three different mayors.
    Serving 9 years on the Disability Awareness Advisory Group.
    Serving 2 years as board member to Linking Employment, Abilities and Potential, LEAP.
    Receiving group awards at NASA.
    Note from NASA Administrator Daniel Golden.
    Getting married.
    Death of dad.
    Traveling domestically and internationally.
    Being in local newspapers.
    Awarded 25 year service pin at NASA.
    Topped out a maximum grade.
    Earning a nice income.
    (There's more exciting new events coming!)

    Each one of these new life events is a one piece of shatter glass. Now I then soldering these broken pieces together again making a new beautiful stain glass window which life's light shines through.

    I let go my old life and live in this broken body but I re-invented myself. I am pleased with what I have done.

    I am no one special. I am not gifted. I am not privileged. I am just an ordinary person who just didn't want to give up! I was just a 25 year old young man who bumped his head on the roof of his automobile in a motor vehicle accident and shattered C6 twelve days before I was to be married.

    I woke up one morning and made the decision that living on SSDI at $625 a month, I was poor. One lady said to me one day, "You look poor! You dress poor!" I didn't want to live this way anymore. I was on welfare, food stamps, free government food and Thanksgiving dinners at Salvation Army. So, I made a change and change my life and lifestyle with no looking back.

    I will say life is hard everyday post injury. I use my compensatory skills to move forward. Going to college or university is not easy but I did not give up. I faced the challenge and made a success of it. I just did it over and over and over. I only have this one life to live so make the best of it.

    Life is good! Life is beautiful!

    Ti
    Last edited by titanium4motion; 04-03-2019 at 11:53 PM.
    "We must overcome difficulties rather than being overcome by difficulties."

  3. #23
    Senior Member Tim C.'s Avatar
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    Funklab;
    Type away: Believe it or not we do read with interest!
    Actually there's a lot we can relate to, and appreciate those like you willing to share. Remarkable history you have.

  4. #24
    Senior Member Tim C.'s Avatar
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    Titanium man!
    Ok what do you take ? How do you stay so happy?
    Did you discover a dopamine drink?
    Did you recover sensation in a certain organ at your S2 level?

  5. #25
    Quote Originally Posted by Tim C. View Post
    Funklab;
    Type away: Believe it or not we do read with interest!
    Actually there's a lot we can relate to, and appreciate those like you willing to share. Remarkable history you have.
    Agree

  6. #26
    Having a purpose or goal in the new world that an SCI puts you in makes life more meaningful. Without a clear destination we wander about aimlessly. It is very easy to fall into a hole and get covered by depression. I was in deep enough to be suicidal for the first 7 or 8 years following my injury. Then some good things started happening. They resulted in a college education, a wife, and a 35 year long rewarding career path. What my life demonstrates is that if you hang in there, good things can happen just as unexpectedly as the SCI. There is no guarantee that they will happen, but my message does provide a basis for being hopeful.

  7. #27

    Work gives you meaning.

    Doctors told Stephen Hawking he had 2 years to live. Stephen Hawking who out lived his disability by 50 years.

    Words to live by.

    Ti
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    Last edited by titanium4motion; 04-03-2019 at 02:09 PM.
    "We must overcome difficulties rather than being overcome by difficulties."

  8. #28
    Senior Member Tim C.'s Avatar
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    titanium4motion
    You have my respect, if not envy as well.
    Grrr, I want happy too.

  9. #29

    You only have one life to live. Live it!

    Quote Originally Posted by Tim C. View Post
    Titanium man!
    Ok what do you take ? How do you stay so happy?
    Did you discover a dopamine drink?
    Did you recover sensation in a certain organ at your S2 level?
    Quote Originally Posted by Tim C. View Post
    titanium4motion
    You have my respect, if not envy as well.
    Grrr, I want happy too.
    My level of injury is burst C6/C7 incomplete respiratory not S2.

    Do not be envy. I am in the same boat with the rest of the people living with a spinal cord injury. I am no different. I am no one special. I am not privileged. My father did not donated $250,000.00 dollars to Lorain County Community College for me to get in. I just applied. The same with The University of Akron.

    What helped me the most in hospital and back home was a strong support system, my family, friends, neighbors, my community and God. I call it my infrastructure. I am not here to prophesize to anyone. Religion is personal to each person so I don't go there. I found this video several years ago and I have to say it is the most powerful words ever spoken. Spoken by Nick Vujivic from Australia who has no limbs. He has a non-profit organization called Life Without Limbs.

    The intro to the video Nick says, "My name is Nick Vujicic and I'm from Australia. And this morning I want to share with you my testimony as to how God has given me grace, strength and comfort through my disability and how you can have victory, peace and joy in your life, even if circumstances are still present in your life that don't make sense or cause your world to turn upside down."

    Then there is about 90 seconds of video of him and it into Robert Schuller's Hour of Power.

    Nick Vujivic says another powerful message, "You see we can't and we should not compare sufferings but this is what we do as a family of God. Come together.."

    That message has always stuck in my mind.

    Here's the video. It is for a Chinese audience but the words are in English.



    With God by my side, we together can move mountains with my disability and He has been my internal strength to take though my incredible life's journey.

    There were days several years ago when I injured my shoulder and in intense pain level 9 or 10 made life very miserable. Pain management doctors would only give me NSAIDs and nothing narcotic like morphine sulfate. There were many nights I prayed to God to take me during the night. I even told the doctors that. They refused to give me morphine sulfate because of the opium epidemic. I got through it by rest, TENS units, ice and icy hot cream 16% menthol. Today I am fine.

    When I got injured in 1987 and home from hospital I was given a second chance at living life again, differently. My physical therapist aid Ellen beat into me to be as independent as much as possible as you can. My injury goes right through both hands. I have no web action, weak grip and my fingers just go out and in with no anhidrosis. When I got home I tried to strengthen my right hand pinch. I went back to building auto models but that didn't work then I stumbled over cross-stitch sewing. Sounds unmanly thing to do but what two finger do you use to sew? I sewed for 4-6 hours everyday for 18 months. You know what? I can hold a pen with a cone for a long time long enough time to take my own notes when I was back in college.

    Happiness, sadness, depression and hopefulness come from between your two ears. I am not being a smart ass about that answer. The same goes for being fat or lean comes from between your two ears. I know this one from personal experience. I grew up starting as fat boy in 4th grade to an obese 300 pounder at the end of 10th grade. During the summer break of 112 days I lost 94 pound and came back to high school a different person. My classmate were very cruel towards me and from that peer pressure forced me to loose weight and I've kept if off for 42 years. My weight floats around 150 pounds.

    I'll answer the other questions on another evening.

    Ti
    Last edited by titanium4motion; 04-07-2019 at 01:21 AM.
    "We must overcome difficulties rather than being overcome by difficulties."

  10. #30
    Quote Originally Posted by titanium4motion View Post
    My level of injury is burst C6/C7 incomplete respiratory not S2.
    Please note S2 sensory level, Ti...



    I believe our friend Tim was making a lighthearted (though not without a bit of brutal truth, which I can appreciate) jest.

    I'm glad you found your way, and probably for many of us god/religion/spirituality is a part of that way.

    Though for me it was not.

    Interestingly I spent a few years exploring religion in my early 20s, and the Bible and Koran still sit on my bookshelf along side the Kebra Nagast and a book by Mao about guerilla warfare, Adam Smith's Wealth of Nations and Marx Das Kapital. I attribute the same significance to all of them. They all had a bit to do with mysticism and they all preyed on that element of our nature that requires explanation of the unknown. I'm sure your perspective as a scientist will help you appreciate in part where I am coming from, though obviously your supernatural experiences ground you in a different way than I am grounded.

    I grew up in a Lutheran church in the south. It was not your typcial Lutheran church, there were routine "revivals" and it was not an uncommon experience to have dozens or hundreds of people laid out on the floor having been "slain by the spirit". Numerous people speaking in tongues (including my parents) was an every-Sunday experience from as early as I can remember. I have only one sibling, but of the four members of my "family of origin" as we say in the parlance of my profession, I am the only areligious one.

    Here I will digress slightly to give some perspective. As I understand it atheists believe there is no god, and that's not me... exactly. I hope that I would believe anything if enough proof were provided for me. Yet agnosticism is a bit of bullshittery, at least as I understand it... you don't believe in god, but you don't disbelieve in god? Okay... I don't believe in the tooth fairy or Saint Nick, but I definitely DO disbelieve in them until such time as evidence is presented to me that they do exist. Just as I disbelieve in spontaneous combustion and vaccines causing autism and everything else that has no evidence or that cannot reasonably be inferred from evidence at hand.

    And that's not to say that I "believe in science"... I mean I certainly do, what fool wouldn't? I just mean that there is no religious connotation to science as some academicians seem to ascribe it. I find it quite amusing when people go out of there way to profess their lack of religion with such religious fervor and absolute conviction, professing that the believe in nothing that has not been proved with double blinded controlled trials.

    Yet somehow I seem to have been able to find a purpose for my life without (at least from my own admittedly limited insight into myself) that purpose being something prescribed by an outside individual, group or tradition. Perhaps I am a humanist... I don't know much about that philosophy to be sure... in fact it seems a philosophy that wouldn't really attract many messianic proselytizers.

    Doing good for goodness sake seems to be a fundamental human characteristic. At least so long as the human in question is well fed and unfamiliar with regular want or danger... which admittedly is a state humans have rarely existed in until the last 100 years or so, and even now those of us with such a reliably stable existence are probably outnumbered by the desperate and the needy.

    I feel for anyone who isn't able to reach a stage in their life when they feel that they have done some "good for goodness sake". Those who are of the Abrahamic tradition might attribute it to divine inspiration. Hindus or Buddhists might view it as building karma, but I would argue that anyone who is human (and not sociopathic) can find some gratification in the improvement (however slight) of the lives of others by their own hand. Google tells me it was some anonymous Greek gentleman who said "Society grows great when old men plant trees whose shade they will never sit in", and I've always empathized with that statement.

    So basically my point is that whatever the reasoning underlying your motivation, so long as you can do something that makes you feel that you contributed in some way to the improvement of the lives of others, you've found a purpose in life. I guess I'm fundamentally opposed to the idea of "the" purpose of life because that seems too exclusive and narrow minded. Clearly you've found several significant purposes to your life... I hope that I have found one or two. I certainly don't think any purpose in life requires some great feat or even gainful employment. I meet plenty of people on a day to day basis who have never really held down a job in their lives, yet they supply so much fulfillment/help/joy/benefit/gratification/meaning to others, that I hope they are as convinced as I am that their purpose in life has been well fulfilled.

    So in closing god or spirituality (whatever that means) might well be integral to one persons experience of "coping" with SCI, while it is entirely possible to cope quite adequately with SCI without even entertaining the thought that a god might exist.

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