Hi Karen,

I am happy for your recovery. I’m sure you worked very hard and doctors often do take away hope and present the worst case scenario. That approach isn’t helpful for anyone.

However, remarkable physical recoveries aren’t always possible. Injuries are all different. For some ,no amount of work, perseverance, determination, desire will allow them to type again, move their hands again, walk again. For some, their injuries make that impossible.

Christopher Reeve was the embodiment of determination and hard work, but he did not recover functional use of his hands, arms, or legs.

I get incensed when people perpetuate the notion that you can recover from a SCI if you only work hard enough. That only serves to make the people that did not regain function, can’t use their hands, didn’t walk again feel like they didn’t work hard enough or like they weren’t determined. That idea just isn’t correct.

I think your message can be one of hope. Hope for a future no matter what type of physical recovery you are able to achieve. Hope that the mind and body are stronger and more resilient than any doctor can imagine or predict.

My hope is, that is the message you will deliver. Please don’t make those that made little or no physical recovery feel they just didn’t have what it takes. In fact those, the very ones that live with the most limitations, they have a tremendous amount of strength and are probably the ones that really have what it takes.

It was told by Christopher, in his last video, to use vibration to stimulate the nerves and IMMEDIATE THERAPY!!!!

Karen,

Therapy is one thing. A cure or a miracle for all is totally different and doesn’t exist. If it did, there wouldn’t be SCI folks still in chairs and so very many quadriplegics unable to use their arms and hands.

The message is that you don’t have to have a miracle cure to live a full life. I still haven’t quite figured out what it takes to live a full and joyful life, but I don’t think it involves some miracle or vibration therapy.

I’m curious why you think everyone hasn’t been healed. Do you think vibration therapy would work for everyone?

Hi Trish.....I so appreciate the message you are trying to convey. I've been a paraplegic for 29 years......able to walk very short distances with braces on both legs.....and two canes. I am mostly confined to a power chair when not using those aids to get around. I consider myself a strong, determined woman.......and have worked with these challenges for all of those years.........and learned , early on, that no amount of will power or strength of determination can get me out of that chair.......up and walking, as I would so love to do ! So......again.......thanks for the message. I hope the truth and strength of it gets through to all who read it. It sure has to me ! Warm regards......Norma

Thank you Norma, and I’m glad you understand my point. Yes I admit that the last 9 years have been incredibly; almost indiscernibly difficult watching my husband suffer and live with a C3-C4 SCI. And I can’t even begin to tell you what living in the midst of this injury has done to our children, our marriage and my life. But this isn’t because of lack of strength, will power, hard work or determination.

I think the people that tend to “heal” and recover physically were just lucky. Certainly hard work in rehab is required, but mostly it relates to the type and severity of injury.

I fought like a dog to get my husband the best rehab and care possible at the time of his injury. With little encouragement or help from the people that should have helped, I had him flown across the country to one of the country’s best SCI rehab hospitals.

But sometimes even the best rehab money or insurance can buy makes no difference at all when it comes to actual physical functional recovery. To think recovery is only about hard work or a special favor from God serves only to cause pain.

I have heard all sorts of rationalization why my husband is paralyzed from the neck down: it’s God’s will, he didn’t want to walk hard enough, if I had only taken him ”fill in the blank”, if we had only tried “fill in the blank.”.

But if I am to believe all of that then that means I must believe that my best wasn’t good enough. That somehow we are ultimately at fault for his lack of physical recovery or even worse perhaps God despises us so much that he feels my husband, our children and I deserved this.

I do not accept those beliefs. I accept the fact that some people are luckier than others.

In the beginning, I hated hearing recovery stories. But now I am happy for those that recovered or made remarkable functional gains. But my mind always says…wow they were lucky. It never says wow they must have wanted it more than we did.

Occasionally someone wins the lottery. Not because they played it better. Because they were lucky.

So since this is Dan’s column I’ll ask the question:

Dan, how do we find peace in our minds when we didn’t win the SCI lottery and someone else did?

My warmest regards back to you Norma. You are indeed a strong woman.

I have a story (but what's new?):

Last summer I was in the park with my three year old best friend Jacob and his mother. I was kind of setting off by myself watching all of the children and their mothers have so much fun together. I really felt such great joy and peace watching all of the love and delight taking place in front of me when a man came up to me and put his hand on my shoulder and said: "I'll pray for you."
Now here I was having a good time and I needed to be prayed for? So I got a little pissed and said: "no, I'll pray for you." I fully expected a fight to break out over who would pray for who.

So why do we tell this story? I telling to answer Trish's question. I have found great joy and gratitude living the life I have. I am a C5/6 quadriplegic who is aging and bald and neurotic and well loved. When you think about it, walking is just a detail in life.

The answer about how one finds peace is always the same and it's pretty simple. It's about letting go and letting go and letting go. Simple but almost impossible. But the more we let go, the more we find ourselves. The more we find with the heart wants and that is usually about love and well-being. And all of those things live inside. We can know that in our heads, but the only way to really know is by letting go and letting go again.

but I also wanted to make a point about what Karen Lynn said. There is more reason to have hope for people who are newly injured than ever before. Especially in the first hours and days after the injury, nobody knows, nor should they predict.
Trish is right, restoring much of what we get restored is often about luck. But hard work and determination can get us back to our potential-whatever that may be.
And goodwill, devotion and faith in our own resilience can help us live the lives we have with grace and gratitude

it wasn't just that it was CONSTANT intense therapy non stop day in and out and forcing myself to do things even if I really couldn't they think that my brain somehow retrained itself because the spinal cord injury is still there???

This is a very profound exchange.  

What is hope, what is luck?  Why do ... .well we all know all the questions.

None of us really knows what is right for anyone else; we can only move forward in our own way as best we can.  

My husband would tell you his soul needed to plant itself in a chair for however long it will take him to learn about not-doing, not being able to do do do every minute of every day and thereby never evolve and develop as a deeply feeling man.  Did his soul call for this paralyzation so he could grow?  What profound lesson did he need to learn?  Will the results actually make him an extremely lucky man?  

And there is my learning too.  How do I care for him without sacrificing who I am and who I need to be?

The potential for the newly injured is so much greater even today than it was 4 1/2 years ago when my husband had his accident.  We are not even talking the same game for those with long term SCI.  

Here is my little story:

Many years ago I became pregnant with our second child.  I "knew" I was carrying a boy, but was going to have a girl.  I also knew something was going to happen to this baby I was carrying.  After his birth, I told my husband how puzzled I was.  Here was this healthy baby boy, and all my premonitions came to nothing.  But in the following 17 days, I became more and more agitated about driving.  I made no connection, but my husband wrote it off to post-partum blues.  I just thought I was going nuts.  

On day 17 we were driving in winter conditions and as we rounded a corner the oncoming vehicle lost control and hit us head on.  To make a long story short, our new son was killed.

My point is, is this bad luck?  I believe the whole thing was completely orchestrated by all of our souls so that we could develop and evolve in the ways we needed to.  If it was luck, how did I know something was going to happen?  And yes, 11 months later I gave birth to a girl - something that would never have happened because we were going to stop at  2 boys.  Yep, that's how much control we thought we had over our destinies.  

People surely look at us and at all our "bad luck" and think something like, "I'm glad I have led a good life so that those bad things don' t happen to me!"  Who knows why some people recover and others don't?  Who knows why some people aren't even moved to recover?  Others would move heaven and earth but it is just not meant to be.  In our small sphere we have met every flavor and now I understand that what floats our boat doesn't necessarily float anyone else's.  

I DO think that there is a lot about the nervous system and the spinal cord that is just beginning to be understood, and that there is more and more potential for recovery from SCI.  In that framework I would want everyone, everyone, to have hope.  People like Karen Lynn will help us learn.  But in the meantime, like my husband, I would hope that we can maximize every minute of what we signed up for:  being in a chair.  And people like Dan and Trish model for us such elegance of that - such profound wisdom - it is truly humbling.

We just watched a Masterpiece Classic (Netflix) called Any Human Heart.  A great study of luck.

Good luck to all of us.

Hi Karen,
I had an idiot neurologist too and other idiot medical personel. So I stopped consulting because they were injuring me during the consultations and was getting worse and worse. My case has become mild after two years of spasms and extreme pain.
So what was your next step then.

`I am personally inclined to agree with you in your thoughtful and well crafted observations about life, luck and what it all means.

My seventh grade teacher taught me about psychology and put this dream in my head. Shortly thereafter he molested me. Shortly after I was married, my wife developed a malignant melanoma. Five years later I became a quadriplegic. Fear after that she was diagnosed with MS. A decade later my sister died.

So am I paying off some karmic sins from another life? Who knows? The only thing that counts is that today I am happy. There was profound learning with each of these losses. And there was profound and unremitting pain with each of these losses. My learning wasn't conscious and didn't take place in my head. My learning took place in my body/spirit.

a yoga once said: "to experience is to live. To explain is to lie."

I know that you felt that there had to be a disclaimer because not everyone will get completely recovered, but you took the wind out of my hopes for healing.  All of the work and fighting with insurance companies, hospitals, working with therapists and trying to keep myself encouraged and my hopes for a recovery have just about disappeared.. Anybody got a rope?