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“From There To Here”
Written by Chloe on Monday, November 10, 2008
It is important to me to try to prepare myself emotionally for becoming paraplegic. I don’t take this lightly. I am not so naive as to imagine that BIID will protect me from grief and depression. Paraplegia is not just sunshine and rainbows. The adjustment will be tough, physically and emotionally. Recently I read a book that helped me work through some of these issues.
The book is called "From There To Here; Stories of Adjustment To Spinal Cord Injury". It is edited by Gary Karp and Stanley Klein, and it is available from newmobility.com. This is a collection of forty five autobiographical essays from SCI survivors. I should give a warning that anyone with an ounce of empathy and compassion is likely to find this book an emotionally intense read. There were very few chapters that did not make me cry. I could only take one chapter at a time.
This actually brings up an interesting point. How do people with BIID view people with disabilities? After all, they have something we need. Where does the compassion come from? I have noticed something interesting when I have brought up my BIID with friends. A pretty common reaction is to express that being paralysed is their worst nightmare; that they would rather die than live in a wheelchair. I don’t feel this way of course. It would be disingenuous of me to say that I am not scared of becoming paraplegic. However, I am definitely not terrified. I can see a wall go up in people’s minds that protects them from considering the prospect too closely. That same wall can also cut people off from feeling a deep empathy with PWD. I do not have this wall. I have been considering the prospect since I was a little girl, trying to imagine what it is like; feeling the emotional pain too.
I have no illusions that I can truly prepare myself for the emotional shock of becoming paraplegic. No amount of wheelchair use, no amount of reading, no amount of talking, no amount of imagining will do it. I expect to go through a lot of what the authors of these essays have gone through. At least I can learn what to expect. And I can only hope that BIID will make things a little easier on me.
This is not a book review. Every chapter moved me in some way. Every chapter is inspirational. That is the purpose of the book. I am just going to pick out a few chapters that seemed to stimulate particular thoughts, which I will share. The chapters are not numbered, but I will take them in order, giving the title of the essay. At the risk of dehumanising things I will omit the authors’ names, but give the level of injury, gender, and age at SCI in order for there to be a little context. I found myself able to identify with every author, regardless of age or gender. However, the girls’ stories were particularly intense for me since I was a girl when I figured out what I needed.
"I Wasn’t Born a Mermaid"
T12, Female, 20 years old at SCI
The author says "I’m not saying I would have chosen spinal cord injury as a path to personal growth, but the depth it has brought to my life is undeniable." This is a common theme in many of the essays. I understand this. It does not surprise me.
"August"
C5-6, Female, 17 years old at SCI
This was one of the toughest chapters to get through. The author has a knack of conveying deep raw emotional pain. I let it all in. What hit me hardest was her recurring nightmare. It is possibly the worst nightmare I have ever heard of. She dreams that she is quadriplegic. In her initial waking moments she feels the relief of it being just a dream. But then…
I ski in such a manner that not only puts me at risk for paraplegia, but also at risk for quadriplegia. I am well aware of this. I knowingly take the risk. For many months I have only dreamt of myself as being paraplegic. I wonder if someday I will dream that I am quadriplegic. I will wake up feeling relieved that I am in fact paraplegic. But then… I will find that I am completely unable to move my arms.
"When You Come to a Fork In the Road, Take It"
T12-L1, Female, 42 years old at SCI
This author gets around with braces and crutches. Sometimes people ask her about it. Sometimes people ask me about it. Her answer is "A girl can never have too many accessories…" I very much appreciate such an attitude. Regardless of whether one actually answers in this manner, I think it is a healthy way to view one’s hardware.
Sometimes I get so caught up in the seriousness of BIID and the prospect of SCI, that I forget that a sense of humor is a wonderful way of dealing with things.
"My Body Is Only One Part of Me"
C6-7, Female, 44 years old at SCI
She missed a turn and hit a tree while skiing. I ski very fast. I don’t slow down for turns. If I screw up I could hit a tree very fast. This could be me. I could be quadriplegic. I don’t want to be quadriplegic. But this could be me…
"Mourning and Healing"
C5-6, Male, 33 years old at SCI
The author is a psychotherapist. Part of his emotional healing took place as he was dealing with the healing of a pressure sore. He perceived an analogy with the healing of a wound of the mind. SCIs create such a wound. BIID can also create a wound to the mind. He says "Things like judgment harm the wound. When we judge ourselves – I’m this or I’m that – it does not keep the wound clean. Lots of things keep the wound clean and help healing – being surrounded with love, not judging others, not being with people who judge you, being in a context when you can help others. Given an environment of support, respect, and safety, more often than not, the human spirit will heal itself."
This sounds just like what happens at transabled.org.
"Transitions from the Abyss"
T11, Male, 37 years old at SCI
The author bought a house in the forest close to hiking trails. It’s the kind of thing I might have done. He slipped, and fell off an eighty foot cliff while hiking close to his house. I have stood at the top of many such cliffs. I have slipped too, but not very far; just cuts and bruises for the most part. The probability of getting what I need by falling off a cliff is pretty low; but I think about it every day, and I have plenty of opportunity.
"Teenager Interrupted"
T11-12, Female, 13 years old at SCI
This essay was more intensely emotional for me than any of the others, for several reasons. The complete injury at T11-12 is exactly what I need, and it is where my "starter kit" happens to be. As a thirteen year old girl I already knew that I needed paraplegia, as opposed to polio or other such early considerations.
The author is very eloquent, and direct; and positive. But there are emotional times of course. There is one little sentence that got to me more than anything else in the entire book. Her mother was helping her into the shower at the start of rehab. The author started crying during this and said "I don’t want to be paralyzed!"… That simple statement says everything. Oh how I wish I could take this from her, so that she would never have had to feel that. I think we all wish this; but that’s not reality.
At the time of writing, the author is a Junior in high school. She is happy and extremely optimistic. She ends "Wish me luck on my journey!"… I do, my dear. I do with all my heart. And thank you so much for being my teacher.
Tags: BIID, Braces, Crutches, Depression, Grief, Paralysed, Paraplegia, Pressure Sore, Quadriplegia, SCI, Spinal Cord Injury, Wheelchair
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1 On 10 November, 2008, Ada said:
I read that book several years ago. Of course at the time I read it, I didn’t know *why* I was reading it:)
Each person’s story is interesting and because they are all different individuals, they pose different perspectives.
My shrink and I had the “worst nightmare” discourse the other night :)