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“A Complete Plain-English Guide to Living with a Spinal Cord Injury”
Written by Chloe on Wednesday, October 29, 2008
It is important to me to be informed about the medical aspects, as well as the practical and emotional consequences of living with a spinal cord injury. The book, titled above, provided me with quite a lot of useful information and stimulated many thoughts.
The author of the book is Carolyn Boyles, and it is available through iuniverse.com. The principal focus is on the medical aspects, targeted to the layperson such as myself. There are also chapters dealing with practical consequences, as well as a relatively small amount on emotional issues. It all seemed relevant to me. The book is long, over five hundred pages. However, the chapters are short and self contained, so it is an easy read if taken in small doses. I have no pretence at any competence as a book reviewer, so this is not a review. These are merely my thoughts as particular chapters resonated with something in me.
Chapter 3: "My Accident"
The author talks about the accident which led to her spinal cord injury. In relating her emergency room experience she says "He did not even order a simple x-ray. He wrote me out a couple of prescriptions for muscle relaxants and discharged me".
The author’s SCI turned out to be far more substantial than mine did. However, it is interesting that my experience was almost identical: no x-ray, discharged with pain killers and muscle relaxants. Later, other physicians I saw about my back were astonished that I had been discharged thusly. It happens. If you can walk around you must be fine. My heart goes out to those whose nerve damage could have been partially averted through prompt treatment. It must take a while to work through the frustrations so caused.
I have the exact opposite problem. I am hoping for an "accidental" SCI. If I am successful, and am taken to the emergency room, it is most likely that physicians will try to treat me so as to minimise nerve damage. This is a horrific scenario for me. I have yet to figure out how to avoid this. (After I wrote the first draft of this, I was discussing the issue with my partner. She was brought up as a Jehovah’s Witness, and used to carry a card on her saying that she would decline blood transfusions. We figured something similar might work for me, in case I was incoherent and she wasn’t there on my behalf).
Chapter 9: "Carolyn, What Syndrome and Symptoms Do You Have?"
Some incomplete SCIs have temporal variations in the symptoms experienced. As the author puts it "Sometimes signals get through. Sometimes they don’t." Since my bladder and bowel accidents have been so far and few between, I have wondered if they have anything at all to do with my minor SCI or if it is just coincidence. This chapter suggested that such a connection is in fact possible.
Chapter 12: "You Are Not Alone"
This chapter is primarily about support groups. The author relates a comment made by someone at a spinal cord injury support group she went to: "in here we are all normal". Although I have never been to a SCI support group, both the chapter title and this comment resonate with me very strongly. I am very much in favor of support groups. They are wonderful.
I have been attending an intersex support group for years. Although I don’t have many intersex issues, I truly enjoy the comfort of being reminded that I am not alone. I like feeling "normal" too. Maybe I shouldn’t be attached to the idea of being normal. I am well aware that being intersexed is not normal. But I feel normal when I am in that group.
Similarly, transabled.org fulfills a support group function for me with regard to BIID. It is wonderful to be reminded daily that I am not alone in dealing with this. We all know that we are not "normal". However, we can be ourselves here, and seem normal within the context.
Chapter 19: Family and Friends Adjustment to a Spinal Cord Injury
I just thought this was a particularly excellent chapter.
Chapter 49: Quality of Life After a Spinal Cord Injury
This chapter was very interesting. There has been some research on this. Apparently, on average, self reported quality of life is NOT less in SCI survivors than in the non-disabled population. The author says "Yet they (SCI survivors) seem to be happier than the general population."
Those of us needing to be paraplegic would indeed not be surprised if we were happier post injury. It would seem to be counter intuitive for that to be true for people without BIID. However, I can think of quite a few reasons why that might indeed be the case.
Chapter 56: Depression After a Spinal Cord Injury
"Depression is very normal in the situation after a spinal cord injury." This is not surprising. "As strange a concept as it may be, many spinal cord injured people find their lives after their injury are more emotionally rewarding than they were before the injury." Actually this does not surprise me either. No, that’s not just the BIID talking.
I am susceptible to depression. I am not naive enough to suppose that paraplegia will relieve me of that. In fact I would not be at all surprised if becoming paraplegic would trigger a depression in me. It is a normal reaction. I will get through it.
Chapter 60: Sports as a Cause of Spinal Cord Injury
The author makes a list of the eight highest risk athletic activites for causing SCIs. Among them is downhill skiing. This is how I got my very minor SCI. I’m on the right track.
Chapter 65: Skin Problems After a Spinal Cord Injury
This is mostly about pressure sores. As I was reading the description of how to take care of pressure sores, I thought "Wow! I’ve already done this." After I had genital surgery, there was a substantial labial area that wasn’t healing. My intructions to take care of this were almost identical to what is in this chapter. I put saline soaked gauze on the affected area, and held it in place with a large pad and stretchy underwear. I changed the dressing about three times daily. This went on for around eight months before it was completely healed. There is no scarring and I am ecstatic about the final results.
I guess I learnt that I’m not going to be freaked out by pressure sores. It can take a lot of persistence and patience, but they will heal eventually if the right steps are taken.
Chapter 68: Pain After a Spinal Cord Injury
Well, I do have continuous back pain after my spinal cord injury; but it’s not that bad most of the time. I was interested in some of the comments about dealing with pain. The author talks about TENS units as one method. A physician did suggest that I get a TENS unit for dealing with my fibromyalgia pain, but it seemed silly to me when painkillers work O.K.
Which brings me to the next issue. The author says "But women often have difficulty getting doctors to prescribe pain medication sufficiently strong to actually provide some relief." I’m not convinced that gender is an issue, but to be sure I have had great difficulty obtaining painkillers for the extreme pain of fibromyalgia.
Chapter 86: Sports After a Spinal Cord Injury
There are plenty of sports available to people with paraplegia. I will be a SitSki fanatic. The one that tickled me was "Wheelchair Jousting with Cattle Prods". No thanks!!!
Chapter 95: Spinal Cord Syndromes as an Invisible Disability
There are plenty of spinal cord injuries which do not necessitate the use of a wheelchair, or any other assistive devices, for mobility. This can create issues with regard to interactions with other people.
My SCI is not even remotely disabling, and it is partly "visible" on account of the back brace. However I am very familiar with the issue because of fibromyalgia. There are a lot of things I am unable to do: reaching for objects on high shelves; turning my head around to look at things; getting anything out of the back seat of the car; motions requiring either much strength or stretching with my arms. If I am having a major episode then I need assistance with eating , dressing, etc. Although I use a sling or a wrist brace quite a bit of the time, mostly there is nothing at all to see. People give me pretty funny looks when I tell them no I can’t perform some seemingly simple task. They don’t see anything "wrong" with me (well, before I started using assistive devices for BIID anyway).
Ironically, when I am in a wheelchair I get lots of offers of help with things that are perfectly easy to do in a wheelchair, but which are difficult for me because of fibromyalgia. I am grateful for the help. This was a completely unanticipated benefit of having BIID!
Chapter 100: Sex After a Spinal Cord Injury - Women
Sex is always a possibility; but it can be different. As the author says "The "Big O" may become simply a memory". It is a memory for me; a fading one indeed. After my back injury, there was too much pain for several months for me to have any sexual interest. Then I decided that I wasn’t going to have orgasms any more since I was supposed to be paraplegic. I have discussed this at length with my psychotherapist, who is also a clinical sexologist. He has SCI clients with no genital sensation, who are nevertheless orgasmic. I’m not going to contemplate this until after I am paraplegic.
I feel very insecure about admitting to not wanting orgasms. Society puts a premium on people being sexual beings. I feel that I must be committing an inexcusable blasphemy.
Chapter 106: "A Word of Warning"
The chapter starts "If you have an incomplete spinal cord injury and have a relative degree of independence, you may be tempted to resume some of your pre-injury activities." I was tempted. Three months after my back injury I was back on the ski slopes, albeit in a back brace and in pain.
The author continues "If you want to engage in any of the following activities, check with your physician first:" There are nine activities listed. First on the list is "Snow skiing". I did check with my physician. He said that I should never ski again because of the risk of reinjury resulting in paraplegia. I already have my season pass.
Tags: Back Brace, Back Injury, BIID, Depression, Nerve Damage, Orgasms, Pain, Paraplegia, Pressure Sores, SCI, SitSki, Spinal Cord Injury, Wheelchair
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3 Comments
Re: ch 95: Chloe, ten years ago I had major surgery (non-SCI). While I was recovering, walking at normal speed was nearly impossible. I borrowed a cane from a friend and for a month, brandished it about.
I was tired of people rushing me and muttering as they passed, I was tired of being passed by taxis (just to say - a crutch or cane will get almost instant attention from a NY cabbie). Using the cane as a visible symbol of my temporary slowdown worked for me.
After I wrote this, my partner and I took a look at chapter 19 (Family and Friends Adjustment to a Spinal Cord Injury). We both realised that it is applicable to our situation right now, not just potentially for the future.
Partners have to deal with two things. Firstly there’s the BIID itself, so one’s partner has to accept that they are living with a nutcase. Then they have to deal with the treatment for the BIID, which can mean that they are effectively already living with someone who has a major mobility (or other) impairment. My partner seldom sees me without wheelchair or leg braces.
Partners have feelings about all this. One of the guidelines for family and friends stated in this chapter is “Express your feelings too. Keeping up a brave front is not always a good idea.” My partner and I have found that it is valuable for her to express her negative feelings about all this, as well as the positive.
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1 On 29 October, 2008, Sean said:
Thanks for the review, most interesting. I know I’ve tried to read a lot about the experience of being paralysed. At first, medical textbooks, but later, more “real” stories from people who were paras. This is one of those other things that we seem to all do ;)