Sometimes you just wanna reach through the screen and issue a sharb bitch-slap.
As often as I "joke" and invite my Dearest of Readers to the latest Do-It-Yourself Amputation Tea Party, I get royally pissed at the attention the press visits upon people with CRPS who actually do proceed with amputations, guided by some pissant of a failed surgeon who needs money for Junior to get into Harvard.
The monetary costs and rewards will never end, not with the chopping of digits, forearms, feet, or legs, whether above or below the knee. Now, try taking the head off, and you might have an idea that works. But until then, CRPSers who amputate are funding vacations and providing for their own certain future misery.
I do not know this woman. I admire her athletic accomplishments. I applaud her for finding sport as, apparently, a means to pain greater than CRPS and phantom limb's joys, together, thus allowing her "diversion" from the original CRPS pain. As logic, it blows! And so, of course, it's tragic and therefore news.
And tragic, high-profile news never, ever gets CRPS right. Hell, most of the scientific disciplines are ten years behind the research-proven realities, so why should any blogger or popular press inker get it "right." I love the introductory reference to this scary disease: "a rare and aggressive condition which causes her body to reject its own injured limbs." Oh, bloody hell, let me at 'em!
Were there some transcendance over pain by the endorphins of Rachel Morris' handcycling, had her original pain not been compounded by some idiot's notion of a cure, I'd be proud to tell her story. As it is, I am glad that, despite my jokes, I've put the word out often enough that amputation most often aggravates the existing neuropathic pain while adding the out-of-this-world, mind-bending situation of Phantom Limb pain.
Anyway -- that most favored segue! -- here is the tale of Rachel Morris, paraolympian:
Rachel Morris doesn't cycle for fun. She does it to make the pain bearable.
The 32-year-old has already lost both of her legs to a rare and aggressive condition which causes her body to reject its own injured limbs.
Now, after a training accident last month in which she dislocated her shoulder, she is worried she may lose her arm, too.
In her position, you would be forgiven for wanting to shut the door behind you and never come out again.
But Morris, who operates her bike with her hands, needs cycling. It is her life, consuming and sustaining her.
"Handcycling is more than a sport to me," said the Paralympic time trial gold medallist as she prepared for the sport's World Championships in Roskilde, Denmark.
"It's a way of managing the pain. Without it, my life becomes unmanageable. And it's what I do - it's what I get up to do in the morning, it's what I go to bed at night thinking about. It is me."
Her mother, Hilary, added: "She's driven by it. People say how wonderful it is when they see her out training at five in the morning. 'Yes,' I say, 'it is wonderful - but it's for pain control.' And then they think, 'Ooh. Gosh.'
"But she has to do what she has to do. Part of her pain management is to push her body hard, distract herself and release endorphins into her brain which help control the pain.
"She's driven by the pain to a great extent so you can't hold her back, because you can't let her have any more pain. She suffers every day, all day, anyway."
Morris's troubles began in the most terrifyingly innocuous of circumstances as a teenager.
"All I did in the beginning was twist my ankle on a dry ski slope," she says, apologetically. "It's quite embarrassing, it wasn't even on a snow-covered mountain.
"From that I had an awful lot of problems which weren't picked up at the beginning - my condition is a strange thing, especially the way mine ended up going - and unfortunately it's ended up with me having multiple amputations."
The condition goes by several names, two of the most common being Reflex Sympathetic Distrophy (RSD) and Complex Regional Pain Syndrome.
Since it began destroying Morris's legs she has had to move from sport to sport, each time accommodating a new level of disability. Her childhood love of athletics became a passion for sailing but, once she lost her second leg, road cycling was identified as the way forward.
She lives life, and competes, in near-constant pain.
"There are two sorts of pain," she explained. "One is from phantom limbs, and one is a pain inside you that has the same intensity as catching your arm on the oven or an iron.
"The first one gives you strange feedback where your limbs were, as though your foot is facing the wrong way or twisted around, and I feel that a lot with my left foot. Obviously, I've got no legs but it's incredible what your brain will do: in the night I'll wake up with cramp in my foot and reach down. It's so real, you reach down thinking that your leg is there.
"The other pain is far more a burning pain which combines with what I call 'white pain'. That's when the pain is so powerful that there's nothing you can do about it, it'll make you drop anything and stop."
In the month leading up to the Worlds, things became even worse. Morris slid off a wet road on a training ride in Bath and dislocated her shoulder.
As she told us how the crash happened, it only slowly dawned on me that while dislocated shoulders are unpleasant for anyone, for Morris they must be particularly significant. I had to ask: if Rachel's body has in the past rejected injured limbs, and she has just injured a limb, is she not worried?
"Causing this injury to my body could, potentially, trigger the same reaction that's happened in my legs, and cause the RSD to become active in my arm. Obviously I have no legs, so the worst-case scenario is that it could do the same thing to my arm," she replied.
"I've become almost paranoid about the colour of it or watching the temperature, which are two of the things that change early on. So I have become very, very worried."
A week later, Morris crossed the finish line fourth in her first race at the World Championships, her body shaking and writhing with the exertion for a good 10 minutes afterwards.
Though disappointed not to win a medal, back in the British team's pit area she seemed happy to have made it through the race.
"The best bit is my shoulder made it round the course. I came out and completed something I didn't think I could have done two weeks ago. I didn't do it as I would have wanted to, but I couldn't have done any more as I am at the moment."
A bronze medal in her second and final event, the road race, is something although - for last year's world champion - settling for one third-place finish was clearly immensely frustrating.
For more reasons than most, Morris is compelled to give everything she has to her sport. Next year, she would hate to settle for a bronze medal. But first she must get herself to the Paralympic start line safely, and that means almost 12 months of waking up and tentatively inspecting the suspect shoulder.
"I've got to think of next year," she says. "That is the ultimate goal for everyone and the pinnacle of my career, so I do have to be careful and protect myself for that.
"If that was taken away from me, I think that possibly is the point at which I would give up. Which is quite a terrifying thought, because the Games have so much power and so much emotion that does drive me on. Next year is massive in lots of ways."
I'm prepared for hate mail, though I don't really get used to it, and get more of it elsewhere than here. More likely, Morris will never know her draconian story has reached the publishing heights of
elle est belle la seine la seine elle est belle. It's such a hidden jewel, this blog.
Maybe that's best, that this post be buried in obscurity, because the best competition I could offer might be wheelchair MMA, and she doesn't stand a chance. Bitch-slapping, in my world, is a
blitzkrieg, and there is no fighting back...
So, a refresher:
Deal with neurologists, not surgeons (those who know my story are now on the floor, spewing good food and drink that might feed the hungry in North Korea).
Understand how CRPS works, and keep up with the new understandings that will be out next month. Note that none of them advise chopping up or off your peripheral limbs when the problem is actually in your central nervous system.
Now should you so neglect the hygiene and necessary stimulation of your affected limb that it becomes gangrenous, soupy and stinky? Okay, fine, cut it off. But that's your fault. Be sure and keep the resultant nub all scrubbed and shiny, free of pathogens, and then you, too, can delve into the world of finding new distractions for intractable pain.
If you prefer the calm, dulcet tones of a doctor person, and here, I am switching to my singsongy NPR voice, listen to Doctor T. Howard Black, who softly and kindly explains, herself a bit out of date:
The only reason I have ever seen in the medical literature for CRPS-related amputation was due to gangrene and the resulting necrosis of the tissues.
CRPS does much of its damage by causing vasoconstriction, especially peripheral (in the extremities). When the veins are squeezed so that their diameter is much smaller than normal, the blood returning to the heart can't do so rapidly enough, and when any tissue is deprived of a stable, reliable source of O2, it dies.
The lack of fresh blood circulating to the extremity also causes the drop in temperature, and you're right - it doesn't just feel cold, it really is cold. That's why, during epidural spinal blocks, the temp. of both feet, hands, whatever are monitored, and when the block exerts its effects, the temp. of the CRPS part gets quite warm.
In fact, it often overshoots its normal temp., which feels *wonderful*. During one of my blocks, the temp. of my right foot went from 94 to 102 within 2 minutes!
I've never seen any other medical reason for someone to have a CRPS appendage amputated; the consensus of the medical community is that, despite the rare loss of pain accompanying an amputation, the far more common outcome is the CRPS pain continues and is often complicated by the addition of phantom limb pain. One of the most horrible things I can imagine is having full-blown RSD and adding phantom limb pain to it in the same location.
