Trish-411,

One word: eloquent!

Dan- thanks for the inspirational response. we all would love for him to be mobile again. not sure if that will be possible though but as long as he has the attitude to try anything is possible. it's approaching 3 months since the malfunctioned surgery and still hasn't been able to transfer to the rehabilitation center. we're waiting on Dr's approval via his body tolerance. (stable bp while sittin in the special chair, all his levels like suger, hemoglobin and all that- i'm sure u know what i'm talkin about) this is all really new to mom and me.
Since my hubby m i are tending to their business on a daily basis i haven't been able to to go the hospital much, therefore mom is there day n night and keeps me posted.
we understand this is going to be a looong road and alot of hard work and persistance, which he is real determined. we also realize he may not regain much mobility but the efforts are goin to be made. i try to keep posted on everyones posts and documentary, which has been very helpful.  much thanks to you and other for feedback.   jerri

Debra- I don't understand why you had to wait 2 yrs to become eligible for Medicare/Medicaid...I only had to wait 18 from date of injury. You can apply well before that tho, if I remember correctly. Might be worth rechecking into.

Jerri, you have a community of people who care. Please stay close to us through this process and we will do the same for you.

And Trish – because of your husband TBI, you are deprived of the compassion and gratitude you need and deserve. I wonder if it feels better or worse hearing how Jeff and Joe appreciate their wives?
You work hard, you sometimes become emotionally and spiritually malnourished, I hope that you are able to feel kindness and compassion for this good woman who works so hard to do the right thing.

annie, it is hard to accept.  Every day you wish you could walk again.

I don't think this is an issue of accepting SCI anymore than it is accepting a child who is not doing well in school or accepting the fact that we might not have the job skills to do the kind of work we want and so on.

I don't think it's about acceptance. I think it's about whether we can allow ourselves to feel we can make a contribution to the world and whether we can accept who we are as people and perhaps even feel kindness and compassion for the person we are.

So it's not about accepting any part of ourselves, it's about accepting ourselves and feeling kindness towards that person.

And to be honest, my priority in life is certainly not walking again. I would much rather have a bladder that functions better or spasms that don't interfere with my driving. But what do I want most of all? I want to continue this life for as long as I possibly can.

Please take care my friends and please keep posting as this is a very important topic

It appears I'm about a year too late on this one, but I wanted to offer a reply to an earlier post ...

Paolo,

Rather than challenge you on calling we who have, for whatever reason, accepted our SCI and the conditions they have caused, 'losers,' I'd like to simply offer my own opinion.

My injury -- L1 complete, ASIA-A -- was the result of a motorsports-related fall last summer in the Isle of Man.
I could easily fall into the trap of blaming my driver for a crash in which only I was injured, but that would mean I'd already lost the bigger race. For as long as I'd been roadracing others had told me that sooner or later I was going to get really hurt, or that motorcycles were dangerous or something to that effect and the short answer from just about any racer worth his salt will be, 'Yeah, but so is crossing the street or drinking too much diet pop.'
As a thinking, longtime racer I'd long ago considered and accepted the risks inherent in the sport, much the same as you do every time you put on that seat belt before leaving the driveway. I wore the best safety equipment I could buy, had the training & experience to race in the classes I'd chosen and was duly insured, at least well enough to feel confident I'd covered all the bases should things go really sideways. Did I ever consider that I could end up paraplegic, and not just dead?
No, but I believe it's this line of thinking that's allowed me to not only accept what happened and get on with my life, albeit from a different perspective, but to face the reality that while there is most certainly great progress being made in the SCI field, I could better spend my time productively instead of holding my breath waiting for a cure to come to me.

My second day at St Maarten's Revalidatiekliniek, as I was sitting for the first time in my wheelchair in the room I would share with two other patients, one of them asked if this was a new thing for me. I replied that yes, it was, but that it had been made clear I was going to have plenty of time to get used to it. His reply was, 'I've never walked,' and as we got to talking I found that Jeffrey was 27, had an apartment of his own, a girlfriend, job & car -- and had been born with spina biffida. It was that moment I decided to adjust to my new situation as quickly & best I could; there would be other things to cry about, but simply not walking or being able to pee standing up anymore wouldn't be some of them.

Does this make me a loser? I think not, unless I want to spend the rest of my definitely more challenging days wishing I'd never started that race, or comparing how much more difficult my days are now versus before the crash. It's only when you keep looking back that you see them catching up, so why worry about what's behind you when your race is all about what's going on ahead of you? Another truism I learned from racing is this: You Get What You Settle For -- read it, learn it, live it. If there are losers in this game, they're probably those who continue to miss what's gone away & can't be wished back, or refuse to adapt & get on with playing to the best of their new ability.
   
Is it not rational to accept the reality of one's new post-SCI life and be happy with what you've still got, or could have by adapting as best one can? Should my friend Jeffrey quit being happy with his life, or should I assume he hasn't the common sense to know any different? Personally, I'm pretty happy that it's even possible to make the adjustments necessary for nearly as normal an active, busy life as I had before and will continue to think of us all as 'winners,' thank you very much.

I have a really difficult time with the concept of acceptance. I'm 10 months out with Brown-Sequard syndrome, left sided paralysis after removal of a spinal cord tumor. I returned to work full time at month four, (I teach in a college nursing program- 23 years experience as an ER nurse) and at the start of this school year was informed the district would no longer accommodate my disability and I lost my job. I could take the spasms, chronic pain and celebrate the return of some function if I could find some place where I feel like I make a difference. I was born to teach and all my years as a bedside nurse prepared me to be a teacher....the quarter I returned to work I know my experience made me a better instructor but stellar evaluations from my students and peers meant nothing to my employer. My day to day is such a struggle to redefine myself. I feel like a shadow dancer, I am stuck somewhere between the darkness of feeling useless and the light of feeling useful not only in my life work but with family and friends ....this is the first time in my life I am afraid of the darkness. Acceptance for me then is indeed finding a place where I make a difference but I'm struggling to meet the challenge.....

I don't want to accept this life I want my old one back at least then I could have found a job I am a t-10 para been this way for going on three yrs this April 15th and all I want is to get the hell out of this chair and go for a walk or go find a job something I hate this new life of mine I don't want it

Charles,
Do you not have a power chair?  Is there no transit authority where you live?  Are there no organizations where you live?  All of these help to get get you out and about.  I do not know the extent of your paralysis but there's a lot out there to help you find a job.  Let us know the answer to my quesstions and perhaps I can help.  I am 2 1/2 years post incomplete and am frustrated daily as I cannot walk or use my hands very effectively but I keep trying.

Yes I have a power chair and a transit system but the last time I was on it I ended up with staff infection so I wont get on it again the town I live in is bakersfield caand I hate it here they offer nothing for people like us and this town is taxing me for things they dont tax anyone else so I cant afford to go and do anything fun

I live in the Las Vegas area.  I have had a few horrible experiences on the transportation buses for the disabled here.  Mostly the extremely long time I have had to either wait for the bus or the time having to spend on the bus to get to doctors appointments.  Fortunately, I have found another transport company that charges only $3.00 each way for a ride.  Also, I have just signed up for Senior Dimensions Medicare Advantage Plan which offers 24 free rides a year.  Are you on Medicare or an advantage plan?  Both have programs that can be found to help you.  I will look up Bakersfield and see what I can find for you if you like.

No this town offers nothing like that I am on mdicare but Debra thia town only cares about money and offers nothing for people like us my level of being paralyzed is t-10

Hi Charles,
you sound pretty angry. Angry at your community, angry at your body, angry at lots of things. It makes sense. The body's natural reaction to having something stolen is anger. And all of us experience our losses initially as a theft.
And how could we not? One day we are walking down the street (literally) and we believe we have some predictability in our lives and a roadmap for ourselves and all of a sudden there is no ground beneath us and we are in freefall.
Anger is a clenched fist, it encourages us to fight whatever injustice we've experienced. In the short run, anger is a good thing.

But when anger lasts, it feeds on itself and the anger gets bigger and more entrenched. And the resentment becomes like an infection that's out of control. Now all of that great insight doesn't really change anything because we cannot decide "that makes sense, I won't be angry anymore."

But allow that anger to be part of the process. At this moment in your life you do not want the life you have you wanted what you had yesterday. Everybody who has experienced any trauma feels exactly the same way. And then there comes a point where you say to yourself: "okay, I don't like this one little bit, but it is my life now so how do I plan on living it?"

All of my growth in life has begun with the words "holy ####, this is terrible and it's not going to change." And then it's followed by "how am I going to live with this?" Charles, that question itself opens the door to resources and answers and creativity. It doesn't get you into yesterday's life, but it is the start of getting you into tomorrow's life.

I'm so sorry you are going through this. Especially because I know that anger and I know that pain firsthand.

Please join us for the live Web chat next Wednesday as we will be talking about our identities before, now and in the future.

Anger is all I've known my whole life that's why I turned to this website early so that this would not have to deal with this anger issue that I have had in me my whole life whole life. PS sorry for any words that are doubled I am doing this from a phone my computer got stolen and I don't have the money to replace it