I’m still catching up on this thread, but this is something I think about more and more. One example is that in my office building, there is a wall-mounted button at wheelchair height to enter the bathroom, but not one to exit the bathroom. What is the point of that? Just to trap wheelchair users in the restroom? Its like the landlord was following the letter of the law, but not the spirit of the law.
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Which way does the door open?
Exiting the restroom you have to pull the door towards you. However, the mechanism that automates the door causes so much drag/weight on the door that it is really hard to open manually. I have to give it an extra heft to get it to open. I can’t imagine that would be easy for someone in a wheelchair. Its a poor design.
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That’s super stupid then.
I’ve always wished that the power mechanism didn’t create so much drag. That’s a common issue.
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I feel you, cayuse. I blew 3 disks while I was in the Army, and never had a scrip for anything stronger than Robaxin. It took a year to get my medical separation and another year with an awesome chiropractor to lose the limp and spasms. I’m damn lucky I found Dr. Steve. I do not think I would have been able to live like that.
I am so sorry that the opioid abuse has prevented legitimate prescription to the people they were designed for 
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Back spasms are horrid! I get them (facet joint arthritis) when I least expect it. Trigger point injections help me some but the waiting to get the appointment then waiting for them to kick in is miserable. We shouldn’t have to live this way.
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If you never had them it is impossible to understand how your entire body locks up and any movement triggers them to continue until you are out of the episode.
I can believe that most people don’t get it, because there simply are not words. Nor would I try to really explain, because for no good reason it is humiliating.
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The young lady in the NYT article who was told by an ER doctor to “go get drugs on the street like everybody else” just broke my heart.
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One of my uncles committed suicide due to chronic migraine 40 years ago. I get them too and without medicine, I would consider it. It’s no way to live.
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That MF - I’d like to punch him in the face. At a minimum. The first Army doc I saw said ‘lots of people have these abnormalities on their spine with no problem’
Umm, but I had problems (aka couldn’t bend over, couldn’t put on my boots - much less tie them - actual tears I couldn’t stop which was horrible) and not to beat my own drum but I had fantastic fitness reports. I was not shirking.
My BF (at the time)l; his father was a surgeon He looked at my MRI and said, yes, many people have these spinal abnormalities - but not at 23!
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It was with a mix of emotions that I read of Caroline’s passing. I’m glad that Caroline left a letter to prompt such a discussion about quality of life.
There seems to be such a focus on “walking again” with SCI that all the day-to-day realities are forgotten - they are often undignified and humiliating. The line about ‘fingering her butt to poop’ is just the tip of the iceberg. Having to have a urinary catheter, difficulties with temperature regulation, breathing issues, risks of infection and sexual dysfunction (to name a few) are rarely mentioned, but very real impacts of spinal cord injury. Of course each case is different, but there’s more to it than most realise.
There have been some public cases of young people with SCI who have made the decision to go to Switzerland.
For a young person in the peak of life - suddenly having your independence taken away, your sport, your livelihood, jeez…even your ability to even go to the loo and for 50% of women with SCI, ability to experience sexual pleasure or climax. If everything that brought you joy has gone, what is there to live for? This is far deeper than just not being able to ride again.
I had a good hard think about how I would cope if dealt the same hand and the honest answer is - I don’t know. It would depend on many things. In my 20s or early 30s, I’d be of the same mind as Caroline. However, as someone approaching middle age with children I want to see grow up, maybe I would be able to battle on with little quality of life for their sake?
The right to choose a ‘good death’ is something I support. I’m not talking about glorifying suicide, but ending suffering - whether that be physical pain, total loss of independence or illness that means the individual is devoid of any quality of life.
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Same. I also have chronic migraines that are pretty severe, but with medication they are kept under (some) control. When I read about stories like Caroline’s, I think about how furious I would be if my migraines became intractable (lasting days on end, and treatment resistant) and someone else tried to tell me what my quality of life was like, or how I should be living it…
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How many of us don helmets when riding, with the explicit thought being, “In the event of a wreck or coming off, I don’t want to smash my brain and become a burden on my loved ones.” But sometimes that happens anyway. Sounds like she had no intention of being a burden, and perhaps saw her decision as another avenue of prevention.
ETA - I see that I’m a little late to the thread, but just read the whole thing. Lots to think about.
Well, wonder away.
This was a heavy thread to read but I truly enjoyed all of the perspectives shared. There was a lot of nuance and lived experiences shared that contributed to my initial feelings when reading the letter. The response letter from the woman who has lived 14 years with SCI was also very eye-opening.
The interwoven discussions around how the built environment, government systems, etc. also contribute to or hinder what life looks like post SCI or for people with chronic pain or debilitating migraines is also sticking with me.
I know COTH has a lot of fiery individuals. However, I find something beautiful about this thread. While some feelings flared, there was a lot of grace given for exploring the breadth of opinions on a topic that society at large is only beginning to discuss.
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Her family is doing something to help future injured folks. https://www.bbc.com/news/articles/cn420z22wnwo
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thank you for sharing this
