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Started my senior year and wound up in hospice

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  • Started my senior year and wound up in hospice

    After work one August night in 1982 crashed at my dorm, woke up and registered for my senior year and drove home to my parents house. Got up Saturday morning, drove to the beach picking up three buddies on the way, they informed me there was a surfing contest at the inlet.

    Drove to Sebastian and three seconds life changed. Dove off the jetty, bounced off the bottom of the Atlantic then slowly floated up face down behind the break.

    Waited for my head to clear in order to roll over and swim for shore. Unfortunately, it didn't work. Realizing that I need to take a breath soon, raised my elbow (learning later about no triceps) as a swell went by, rolling me over on my back.

    Took a breath, relax, no problem stars had gone away, head was clearing, now will just roll over and swim for shore, still didn't work. Then someone started towing me (there were 10,000 people there) and, then put me on a long board, then some sort of stretcher at the beach, into a 4 x 4 vehicle at the water line, to a gurney in the parking lot and into an ambulance.

    Got discharged from rehab on Friday and on Saturday morning two of my nurses picked me up in a candy apple red T top Corvette and as we drove down A1A, the friend who bought my '71 Satellite pulled up to the stop sign right as we drove by. Another friend bought my bike, a ?76 750 Yamaha swing back with a driveshaft.

    For most of the 80s had to drive to Orlando to get any help with the SCI then they built Sea Pines and met Dr. Miller. He wore scrubs and flip-flops and had an Atari game in his office, my kind of guy. Remember him telling me to shut up and listen and would learn something, always did.

    Knew two things after breaking my neck 1) could not live with my parents and 2) could not count on Social Security. Didn't have a penny to my name, so after finishing my degree in Business and couldn't get a job, went back to school and getting a degree in computers.

    From working full-time, Scuba diving, waterskiing, chess tournaments, traveling the country and living in hotels for months from Burbank to Birmingham, Nashua to Key West, am now paying the price. One of my biggest problems is accepting help and yesterday was admitted to hospice, is there any interest in what happened in between? Does my story interest anyone, is it any different than anyone else's? My demise is not imminent, just takes a little bit to get your head around the label.

  • #2
    Seems like you got a story to tell, and you’re a good writer. Don’t wait for permission. Tell your story.

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    • #3
      Write it up and sell it. Hit the TV circuit. Be good to see something other than the: I was paralyzed and god made me walk or if you work reaaaaaal hard you can walk again, crap.

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      • #4
        I agree. Consider writing more; perhaps approach New Mobility to do an article for them about your life experiences after SCI/D. That would be a way to get started, while you also consider and work on expanding this into a autobiography book. I am sure you have a lot of life experience that would be helpful for anyone dealing with life set-backs, not just others with disabilities.

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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        • #5
          I like it. Good luck on your efforts.
          I refuse to tip toe through life, only to arrive safely at death.

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          • #6
            Throughout our lives we wonder if we are successful or if others think we are. It is as natural as "Keeping up with the Joneses". Competition or comparison amongst other individuals of our society from athletics to mating, it is inherent to ourselves as a species.

            In our lives, injured or not, we will seek a purpose, a reason or an answer to life's question, "Why was I born to suffer and die?"

            To determine if life was a success, what metrics does society, we ourselves, use to answer this question. Income, net worth, wife, kids or quality of life, how do we measure success, or even define it? Having firsthand knowledge of what we lost , do we not now have different criteria of what it is? Our values have changed as has our measurement of this criteria.

            Of course there are successes as well as failures trying to function in today's society with a significant disability and still having troubles accepting it.

            A litany of anecdotal adventurers stories may perhaps be entertaining, like a TV show, yet not reveal any purpose, insight, make no statement about the tragedies and triumphs of living, or what makes you continue living as a quadriplegic. to explain do you outweigh competent ADLs such as changing the sheets may be a pragmatic "How to Guide" that a combined effort of the community could produce a much better product than myself alone. It would take a lot of time and energy to relive and physically write and without any desire or purpose, no longer have the energy to expound on it now, perhaps another time.

            Why is my story any different than any of yours? Only the names have been changed to protect the guilty.

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            • #7
              You'll never know if your story is different unless you take the change. Such is life. Those that try and those that don't. Generally people look back and say "I wish I would have."

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              • #8
                Don?t know when this was written, but while looking at it a friend (Guilty of much) came over, started reading it at the same time and then saying he was glad that the ?stairs at the fire department? or ?bouncing off the steamboat? during a beach dive were not mentioned.

                Back to what I found:

                Have either painted myself into a corner, or am boxed in a paradox. Did not know how bad my injury was at the time, still learning its magnitude and ramifications, implications and connotations today, but the friends who saw me in the hospital did.

                From my perspective did not realize the visual impact of being in a rotating bed while my neck was healing. One told me his stomach dropped out when he walked into my hospital room and saw me in the bed with tongs screwed in the my head and weights hanging off the cable. Look one up on the Internet the other month and it looked pretty medieval.

                They gave me a beer every lunch and dinner in an attempt to get calories in me, didn?t drink any of them. Was also blessed by a doctor who sanctioned smoking marijuana to induce my appetite, this was in Florida ?82.

                Didn't realize it at the time, but even with my hospital room door open, we smoked a joint of skunk weed. A nurse came into the room one time, gave everyone a dirty look, and not saying a word, shutting the door as she left.

                After six weeks the fusion in my neck had healed and was ready to go to rehab and got my first UTI. Needless to say they won't transport you with a fever (mine was 106) and was having some serious hallucinations. Threatened to pack me in ice if I didn't start drinking more water, but aren't IV fluids the same?

                Got to Humana Lucerne in Orlando ~mid October and was introduced to my nurse named Steve, she was quite good-looking and my therapist named Kermit. However, this is only an extension of all the strange and horrible things that were waiting to be exposed to me.

                My roommate was a biker who got a pressure sore deliberately so he could collect $100 every day hospitalized. They put him on home healthcare and he was not happy. Next roommate became a lifelong friend, talk to him the other day.

                Had all the pokes, scrapes and brushes determining me a C6 complete, today they would call me a C6 Asia A. Do not have any grip or wrist extensors so have the classic quad club hand. Had a trace of triceps, which is a big blessing, perhaps from swimming in California and surfing in Florida. After discharge used Nautilus equipment to get my triceps back (stronger). Still have no grip or hand function.


                Had a really bad attitude and later found out that were going to throw me out of rehab because I wasn?t to do anything. Furry memories.

                However, after going home for a visit during Christmas, and friends came over, realized life goes on. Was discharged six weeks later and was back in the dorms in six months.

                Approaching discharge from rehab, you have a meeting with all the doctors, nurses, therapists, home modifications (with my parents never did, not even a ramp), etc. and they told us all their conclusions and asked if we had any questions.

                I asked if there was any reason why I could not live by myself and there was an awkward silence. Then one by one, each person said ?no? with a caveat and was back in the dorms six months after discharge living by myself ever since.

                Finished my degree in Business and could not find an entry-level position. Then with the help of Vocational Rehabilitation, got a degree in Computers and got in the door as a Systems Analyst and then transferred to Contract Administration.

                One day after work, was whining into my beer about taking my showers outside with a garden hose in January. Not even a ramp, had to pop of wheelie as a C6 quad wet to get off the porch.

                A stranger came up to me and told me he would build me a custom apartment. Listened politely not confidently, yet he built me a great little place. Later his wife made me get out of bed, go down the street and purchase a house with a guest house then went back to bed.

                She also helped me acquire two duplexes, on 15 year notes, and rented them out for me. Have been blessed with an incredible occupancy rate of over 95% and now they?re both paid for.

                Worked at the local Center for Independent Living for a year and then went to work for the DOD as a Systems Analyst and then as a Contract Administrator at Patrick Air Force Base, CCAFS, KSC, Northrop Grumman (when it was just Grumman), Harris and then retired, got bored and went to work for the local hospital conglomerate IT department.

                Then got a new wheelchair, broke my day legs four times in two years and things went downhill from then.

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                • #9
                  That is a pretty good life! Thanks for sharing. I have awful numbers for bone density and expect that may be my demise, but one carries on until it happens, no? My sympathies in these hard times.

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                  • #10
                    Originally posted by Cris View Post
                    It would take a lot of time and energy to relive and physically write and without any desire or purpose, no longer have the energy to expound on it now, perhaps another time.
                    Hello Cris. From what you have revealed in this thread, you have a story worth the telling.

                    Are you are too fatigued(?) to embark on such a task?
                    Maybe a ghost writer would be a solution?
                    I would think that the narrative of your life would be of interest to a lot of people regardless of their physical condition and an inspiration to many.

                    Some days are just too much..........We all need inspiration to function, even half well, in this life.
                    Well, I do.

                    I have enjoyed what you have revealed this far. You have improved my day.

                    Don't let Hollywood get hold of the story, there is every chance that they will just screw it up
                    Last edited by slow_runner; 12-25-2018, 07:24 PM. Reason: spelling. yeah, I know, its a bit anal. but it bugs me. (grin)

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                    • #11
                      Life's not fair for sure; you survived financially, helps not to have chronic pain beat your ass daily, that's a plus and I envy that.
                      We must be near in age, I grad in '82 .
                      How did you go airbourne off the jetty, if you don't mind?

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                      • #12
                        To answer your question there is an inlet from the ocean to the Banana River Lagoon with a jetty that created a good break, but it could also be tiring to paddle out at times. When you first arrived, often you would walk down the jetty, though your board off and dive in after it.

                        If you are already in the water and had to paddle through the break, you usually would go 50 or 70 yards north and then paddle back south to the swell. It is all depended on how brutal the break was, most times you could paddle out with no problem at all.

                        As for the chronic pain, believe that is one of the reasons they put me on palliative care and then hospice. With the opioid crisis and all the hoops you have to jump through to get narcotics, this was the simplest and easiest way to get me the drugs for the pain. Suggests it as a way for people having trouble getting appropriate medications for pain relief.

                        When the pain gets bad my mind won't work and cannot write coherently and it uses up a lot of energy. In order to justify using up this fuel for ancedotal stories would rather be pondering the meaning of life. This takes me back to, after breaking my neck and unable to get a job and then the subsequent destructive behavior, and finally asking the question "Why was I born to suffer and die?".

                        My demise is not imminent, not likely for many years, but the label changes your perspective on what is important and what your priorities are. Not scared of dying and am more interested in what happens next and what it means.
                        Perhaps when more stable, will post some silly tales and see if people like them, sometimes writing for me is therapeutic. Have written pages upon pages of issues and problems that needed to figure out or clarify and never shared, posted or done anything with them.

                        In the summer time it used to rain at 3 o'clock and we walk across the street to a friends house and watch General Hospital. Same thing happened that afternoon and my car (kids did not have AC back then), was parked on A1A, preheating.

                        At the age of 18, was offered a scholarship and a commission from the Army (already had two years of college and ROTC) but a six year commitment was kind of overwhelming at 18 and declined.

                        In my house you got your first glass of wine on your 13th birthday and then could drink any time such as dinner, holidays, etc. and as long as you're going to school, you can live at home. After turning down the commission, parent booted me and I went to Alaska.

                        Six months later enlisted in the Navy because the only job in for me in Alaska was at Point Barrow, inside the Arctic Circle. After seeing the snow getting lower in the mountainous every day, enlisted in the Navy and 37 days later took three stripes stripes, a honorable discharge and travel pay back to Alaska. Then went back to school in Florida.

                        Got a job at the local Jai Alai fronton which worked perfectly, while the game was going on was able to read my textbooks. Riding my bike to work on my first day on the job got hit by a thunder storm. Stopped at a laundry mat, borrowed a towel from a lady, tossed my clothes in the dryer and made it to work on time

                        The next summer went to Europe and studied at the University Konstance on the German, Austrian, Swiss border and it was a fantastic place. When going to University, may have gone out on the town too often and partied with the locals too late and then skipped too many lectures and tours that started in the early morning. That’s what my report card reflected :-)

                        One year laid my bike down going 75 mph and had a hemoratic contusion (TBI), took 7200 V in my shoulder and out my toes and hit an island waterskiing.

                        At 3 o'clock that afternoon, as the rain clouds moved in we decided to get get wet by diving off the jetty into the ocean before getting in the oven parked on A1A, three seconds later life changed.
                        Last edited by Cris; 01-03-2019, 01:18 PM.

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                        • #13
                          A waterskiing adventure

                          One week flew up to New Hampshire to visit a friend that had met in rehab. Met her when she first got there and was obviously depressed . So brought her a chocolate bar and we've been friends ever since.

                          On my way to New Hampshire for a week landed in Logan rather than Manchester and drove back to her house in the Hamptons. Had dinner, bottle wine and talked long into the night. The following weekend we went waterskiing in Vermont.

                          She drove from her wheelchair rather than transferring. So I got in first and transferred to the passenger seat and push my wheelchair out of the way knowing that someone would be there who could help me out. Then she got in and locked her wheelchair and off we went.

                          Since there was no way for me to do the transfer from the passenger seat back into my wheelchair, we pulled up to a crowd of people who look like they were there for the skiing and asked if if they would pick me up and put me in my wheelchair. They look surprised, but did it with no problem.

                          We parked, got out and started talking with all the different people. Besides the disabled disabilities there was a waterskiing coordinator, people in the boat, people to put you in the sit ski and volunteers who chased you on jet skis. It took a lot of people to volunteer support this can only give them my highest regards.

                          The waterski was about ~3 feet wide with box that you put your butt in, knees almost to your chest and in the front of the ski was a notch to put the rope which had a knot in it to lock it in the notch.

                          With the rope pulling the ski you could then pull the ski rope out of the notch on the ski. Unfortunately, with no grip, was unable to pull the rope out of the notch and had to use my balance alone, as a quad :-) had to do it by balance alone which led me to try and ride the wake of the boat, like surfing.

                          Afterwords when we were sitting around talking one, person commented that after all the years doing this, was the only one that dumped going headfirst.

                          As the afternoon got later, we started driving back to New Hampshire, and decided to stop and eat Chinese on the way home. When we exited the expressway, some of the curves and speed were a little bit too much for my light weight wheelchair. Needless to say (women driver) tipped me over and then freaked out. Told her don't worry, and press on to where the restaurant is.

                          We intercepted some young men walking in the parking lot who looked physically fit and asked them if they would put me in my wheelchair. They look confused but smiled, put me in the chair, continued on their way and we went in for Chinese food, and then drove home.

                          While visiting that week also went to Fenway Park for a Red Sox game, bowling (first time for me) and got lobster from the sandwich truck parked off the side of the road.

                          It was a nice vacation and actually pretty cool for two quads to do this by themselves.

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                          • #14
                            When the 4 x 4 got off the dunes into the parking lot was transferred into the ambulance and they started to cut off my favorite pair of baggies. Told them to stop, but they did it anyway.

                            When we left the beach noticed that we turned south on A1A and asked why. They told me that Indian River Memorial Hospital was the closest, thank goodness. In hindsight got one of the best surgeons in the United States who purchased a rotating bed with his own money for the hospital. After the hospital realize how well they were in reducing decubitus, they reimbursed the doctor and purchased three more.

                            However, this is where repression kicks in and is hard for me to write, don't want to go back to that day. Have not remembered a dream since breaking my neck, but get ?day mares? or flashbacks sometimes and can feel the defense mechanism kick in and do not want to relive the day.

                            A rotating bed goes 82 ?? (four minutes to each side) and once you get into the smooth movement it doesn't bother you. Unfortunately, to start the bed you moving need to engage the motor. This is done by turning the bed X amount of degrees until it finds the "locked in" position.

                            Well when they?re moving to the bed to engage the mechanism they?re moving in a freefall manner, very quickly and it scared the hell out of me because that?s how I thought it was going to be all the time. To compound it, the people were not familiar with the bed and had trouble engaging the "clutch" without having to swinging from side to side so severely.

                            After telling them to stop swaying the bed like that, they told me it would get better and would actually like it. Because they were unable to engage it correctly requiring more radical swings of the bed to engage it, told them stop. Told them to take me out to the parking lot, not going in that bed. Then some nurse told me, ?shut up, you?re never going to walk again.? still told them that I was ?not going in that bed.?

                            My parents are in Maine, my brother was in Alaska, I?m 21, just broke my neck and the only thing I know is something bad happened.

                            Was obviously sedated and awoke laying flat on my back, not moving. (In our injured lives, how much time have we spent staring at those white ceiling tiles (Don?t believe I ever got over 3000 when counting the dots on the ceiling tiles).

                            Next thing I remember is a nurse pulling up a chair sitting down and talking to me. Just talking to me, introducing herself and then explaining how the rotating bed works and why it was necessary and apologized for what happened last night.

                            My memory of the bed is swinging freefall, so we agreed that I would try it again, as long as they stopped it as soon as I said to. It clicked immediately into place and started rotating 82 1/2? every degrees every eight minutes for the next seven weeks, except for one incident.

                            Several days after the initial injury (swelling to go down) the doctor walked into my room and he had a plant mist bottle hanging on his pocket. He started this misting my face and asked him what was he doing and he told me bring you with cocaine.

                            The surgery to fuse the spinal column which took more than 14 hours. It took so long because of picking up all the shards from my shattered vertebrae. Then took the piece of bone out of my hip and laid it over C-5 to C8? Can still see a little piece of wire when getting an x-ray of my neck.

                            To stabilize my spinal column to heal after putting the bone for my hip had tongs screwed into my head. At the end of the tongs were some weights to keep it rigid.

                            Don?t know why, had to be human error, but the wire cable connecting the weights to the tongs screwed into my head, caught on something and when the bed rotated to the other direction, the weights free fell. The doctor did come in at 2 o'clock that morning and fortunately, no further damage.

                            One day later asked my doctor if I had severed my spinal cord and he told me to imagine a banana wrapped in cellophane lying in the palm of your hand. Then smashing it in half with your other hand. The cellophane did not break, but you never going to connect those pieces of the banana together again.

                            After asking the doctor when he was going to take the take off the tongs and he said, as most doctors "in a couple of weeks". Pondering that for a moment replied "a couple is a pair and a pair is two, therefore your going to take them off in two weeks, right?".

                            He did actually remove them two weeks later and was supposed to go to rehab the following week.
                            Last edited by Cris; 01-23-2019, 01:53 PM.

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                            • #15
                              getting anything from these sorely in need of editing postse?

                              They prescribed me a beer with lunch and dinner and never drank one (took over 50 home) presume they wanted to get calories in me. Broke my neck ~165 lbs. Weighed in at 121 lbs. when starting rehab. Always wanted to put an ad in the paper "Send me five dollars and I will tell you how I lost 40 lbs. in six weeks and kept it off." Never did.

                              The tongs were gone and it was time for the tilt table. It (the table) had a bad attitude and within seconds blood pressure crashes to 0/0, they slapped the table silly and was flat on my back in seconds. Never even had a chance to say hello, never mind goodbye, they just brought it down, fast.

                              Have had really low blood pressure ever since my injury, 42/36 sitting up in rehab, 40/28 lying down within a year ago. Getting weaker, it takes longer to recover, etc. etc. It can crash and crash hard quickly, always keep a jar of Proamatine in my van, both wheelchairs, next to my bed and at my desk.

                              The education to my injury began as they took out their assessment devices consisting of a small paintbrush, a tuning fork and a pin. While in the rotating bed they had my hands in splints to keep the fingers extended. Never saw myself, or the bed and had no concept of the visual impact of my friends walking into the hospital room.

                              There is no functional tendonisis in my left hand only the right quad club. Can pick up a 12 ounce can of soda pop though when it condensates, becomes very slippery.

                              The magnitude of my understanding of what happened rose by an order when they asked me to raise my hand over my head as they held my elbow. Once, twice, and then crashing down into my face. It was the beginning of learning what no longer could be done. Was designing how to modify my bike to shift gears and push in the clutch without ever realizing had no balance.

                              Recovering my triceps is an anomaly, a blessing, a lucky combination which took a lot of work. Could actually swim before being able to walk and growing up in California swam competitively for years. Then moved to Florida and practice paddling my board. Believe it helped my body we re- learn the triceps movement with the help of years of Nautilus equipment.

                              To get from the acute-care hospital in Vero Beach to the Rehab Center in Orlando they wouldn't transfer you If you had a temperature. A urinary tract infection, put it over 106 degrees and was in full-blown hallucinations. Don't need to hear the details but I was in the lobby of a McDonald's and had got there by grabbing onto bumpers of cars like Michael Fox in Back to the Future (years before the movie came out) on his skateboard.

                              They threatened to pack me in ice if I didn't start drinking more and still don't understand if I was getting the fluids IV is there a significant difference? However the fever broke and was transported by ambulance to Humana Lucerne in Orlando ~October 5, 1982.

                              Meeting my roommate, a biker who got a pressure sore deliberately for the insurance money they sent him home on home healthcare as a very unhappy camper. There was Stevie and Kermit and then met Tonya, Janet (the T top Corvette) and the rest of the animals at the zoo.

                              Now have a beautiful woman feeding me every morning and it became a game that I would attempt to undress her by taking the belt from her uniform and hang it on my bed is a trophy. Unfortunately, one night after going out to the van, the battery to the van, died and since nobody was driving it ever never got charged. It was nice while it lasted, and it lasted for many moons. The driving evaluation of whether to transfer or drive from the chair was an interesting experience, which took on a life of its own

                              Do not know if it was cyclical chronic depression or chronic cyclical depression, don't do it is often now but still "shut down". Turn off the phone, No lights, no sound, no light, lying on my back without eating for days at a time. Found out later, your not supposed to do that in rehab which lead to some other interesting tangents and really messes you up as you get older.

                              Couldn't be in denial because I skipped anger or do you have to do them in order?
                              Last edited by Cris; 02-01-2019, 09:17 AM.

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