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Tuesday, November 25, 2014
I’ll start out with something on the upside: I got my first ever pair of LuluLemon running capris and although Bob thought the large side pockets were ideal for a phone, I was thrilled that I could fit an entire honey bun in the pocket! The response from one friend of mine to my excitement over the honeybun, “words fail me.”
But, on to the purpose of this post …
So, yeah, just like the title says, this is the post that I never, ever thought I would have to write. This is the one that seemed like a complete impossibility … during all those years when I was racing the pro road circuit, going to Olympic Marathon Trials, running on a national women’s team that twice took the 5K road title, going to so many National Championships I can’t even remember how many, winning a silver medal at the 50 Mile National Championships, getting national and even world rankings, making a living as a runner, doing the job that my husband always called “the big scam” because it was so wonderful that it was hard to imagine it was really a job … during all of that, I never once imagined that I would be writing a post like this.
I have been diagnosed with a progressive, incurable, neurological disease. It has been developing over the past several years, very insidiously, leading to a series of misdiagnoses. It is part of this damned auto-immune problem that is killing my body from the inside out. And, now I have developed antibodies to a neuromuscular transmitter called GAD (a chemical that makes the nerves in my muscles work correctly). Its long name is glutamic acid decarboxylase. GAD becomes split into two molecules, glutamate (which becomes part of the metabolic process inside cells, remember high school biology: the Krebs Cycle) and GABA (which makes motor neurons, or nerves that control muscle cells, stop firing once their job is done; it’s the “okay, stop now” chemical). When GAD is attacked and damaged, I don’t have enough GABA in my system to make my all of my motor neurons stop firing, so then some of my muscles “lock up” or, worse, they spasm and contract so hard that they can tear the ligament off the bone.
My renegade immune cells have somehow decided that GAD is a foreign invader. At times they begin an assault so furious that it affects my ability to run and even my ability to walk very well. It can also cause very painful episodes, ones that have brought me to my knees and taken my breath away, ones that have resulted in Bob finding me on my knees at 3:00am tapping my forehead against the wall and crying because nothing was strong enough to kill the pain. That one ended with a trip to the ER and IV pain meds.
I don’t really know what the prognosis is at this point. I seem to be responding to the pharmacological cocktail that I am on now. I have brought the concept of polypharmacy to a whole new level! Some people with this condition do not respond well to any type of medication combination, but thankfully I seem to be responding to the mixture of medicines they have me on for now.
I have had periods when I started to feel like my body was completely falling apart … and it is devastating. I can’t even begin to explain how difficult it has been. But, then, when I finally start a few weeks of upswing, and I reach a period where everything seems so close to normal, I can almost convince myself that this is just some big mistake and there is something as simple as a vitamin deficiency that they have missed, that it will never, never come back.
Even though it remains episodic at this point, it never goes away completely between episodes. It improves enough sometimes that I go out during the good periods and run 50 kilometers and I feel so close to normal that I kneel down and kiss the ground and cry when I finish running … really.
And, then, time marches forward, and I feel it starting all over again … and a panic sets in. I try everything: I pretend I don’t notice it, I tell myself that I’m imagining it, I try to force myself to do as much physical activity as I can, like I’m trying to prove my fitness and strength and normalcy …. Then it gets bad enough that I can’t pretend it away anymore.
A few weeks ago, sitting in the clinic, I asked my doctor, “What is wrong with me?” I begged him, “Please, just fix me.” He pulled his chair right up to me, with our knees touching, until we were almost chin to chin, and he told me that we had to have “that” serious discussion, “I hear you, I do, I really do, I hear you when you say fix me, I feel for you, I empathize, but this is not fixable, it is not going away, and it’s not going to get better.” On some level I already knew that. But, it was like a knife went straight through my husband’s back. I could almost physically feel his pain. His breath slipped away and it looked like he couldn’t swallow. I watched him, but he couldn’t even look up.
This is not where I expected to be at this point in my life. I feel cheated, yes, I do. I am watching my body become addicted to a regimen of narcotics and anticonvulsants, to corticosteroids, to immune-modulators. I pray that these planned addictions will stop this disease in its tracks. But, I have also started to make a bucket list. And, interestingly, as much as I expected this to make me become very self-centered and self-absorbed, I am finding exactly the opposite. I think all of us have a deep sense of compassion for others, but it somehow gets lost in the shuffle of life … until everything is upended. Then, surprisingly, you re-find it. Somehow, in the midst of that adversity, you find a deep understanding and compassion for others again.
So, as I already said, I do not know what the prognosis will be for me. I hope that the years, the decades, of hard training that I’ve put in will help me stay mobile and independent. I am afraid of the episodes that make it feel like my brain has forgotten how to put one foot in front of the other without having to expend an enormous amount of energy and concentration to make it happen. I am afraid of the horrible, intractable episodes of pain that have occurred a few times already. I am afraid of the times when I feel like a burden on everyone. I am afraid of the depression and anxiety that all of this has visited upon me, and upon Bob as well.
That day in clinic a few weeks ago, my doctor tried to lighten up the mood. After all of the complex tests, labs, MRIs, CT scans, X-rays, EMGs, NCSs, medical consults, etc., etc., etc., he said that I am structurally the healthiest patient he’s ever seen – my spine is nearly perfect, my bone density is unchanged since my very first bone scan at the Olympic Trials center in 1999, I have no evidence of any type of malignancy or tumor or leukemia or myeloma, I don’t have MS or ALS or lupus or rheumatoid arthritis or arthritis of any kind, no evidence of old stress fractures anywhere, my blood chemistries are perfect, my A1c is still 6.2 even with all of the prednisone …. “You’re the healthiest sick person I know.” Yeah, of course, that would be me.
I have been surprised by how hard it has been for me to reach the point that I am ready to tell people about this. In part, the difficulty stems from the horrible validation that comes with saying it aloud. In part, there is a sense of embarrassment, regardless of whether that is right or wrong. In part, it is because I just don’t know what to say. Now I can actually talk about it quite matter-of-factly, though, even very dispassionately at times. I think I have cried out all the tears I have for it. The tears I have now are usually either tears of frustration or tears of fear when I feel the downhill slide coming on once again.
And, then, just when I get frustrated, have a mental meltdown, and cry and yell at Bob that he doesn’t understand because it’s not ruining his life, the cat comes tearing through the house with a two foot long ribbon hanging out of her butt, the ribbon twirling in the air behind her, making her alternate between running faster, scooching her butt on the floor, or turning in panicked circles. Yeah, life just keeps going along, doesn’t it?
Happy Trails, really, happy happy trails!