If you follow me on Twitter you may recognize my hashtag #CrippleAdventures, some of which I’ve blogged about in the past here. Since the snowboarding accident 4.5 years ago I’ve tried to keep the humor up about this crazy health situation. That effort’s just about run its course, especially now that it seems the trouble I’m having may be more serious than lingering neuropathy.
It is a bit too early to start jumping to conclusions about what exactly is underlying the symptoms, but I will tell you I’m afraid it’s something like MS or ALS. I’ve stumped three different primary care physicians, at least 4 specialists and their array of nurses and interns, countless X-ray, MRI, and CT scan technicians, and the guys at the Bacon Test clinic. All of the scans come back with perfectly normal results despite failing the reflex and strength tests and weird results on different nerve conduction studies. I’ve had 8 different operations to reconstruct my arms and treat the neuropathy, yet it continues to get worse. It’s not diabetes, cancer, a thyroid disorder, anemia, vitamin or hormone imbalance, a vascular disease, an STD, or pinched nerves. Nothing shows up except weird, verifiable symptoms that the tests should be able to explain but don’t.
When I left Nevada my surgeon’s advice was to wait and see if anything got worse, since improvement could take time. He was concerned that worsening symptoms would mean a neurological disorder since he’s done the latest treatments for the nerve damage I had. He recommended me to the Cleveland Clinic in Las Vegas, although they didn’t take my insurance and needed $$$ up front even for an evaluation.
So here we are, a year and a half stubbornly denying the worsening of my condition. The blindness and paralysis are back and frequent. So is the pain, the twitching, all in places and patterns that don’t make any sense. While all of this goes on I’m trying to keep my job, which has only gotten more complex and brought more demands and responsibilities while my physical and emotional resources have been long overdrawn.
I’m watching my career dead-end as we speak. With the promotion and changes in the business my role demanded I develop greater people skills and devote more time to orchestrating some changes and ensuring they come off without a hitch. There are days when I can’t move my legs, or even roll myself out of bed. Today I was reprimanded for being late last week, despite it being a direct result of the new medication I’m taking and partly exacerbated by an Outlook outage. Over the weekend I was called on for not anticipating another team dropping a piece of work and then not being able to take charge because I had no way to see the piece of work, much less take action on it. My work is being re-directed to others and my responsibilities are being pushed towards an avenue that leads straight off a cliff. The pessimist in me says I’m being set up for failure. I know there are plenty of logical conclusions and my boss(es) has/have been well-updated with my health concern over the last four years, but my gut smells something wrong.
All of the struggles happening in my body are having a huge impact on my life, despite being more or less invisible. The last 4.5 years have been spent trying to push through and get on with my life like normal to varying degrees, although I didn’t do it very well after surgery. 8 operations in a year and a half is a little rough though, so I’m not ashamed of all the help I’ve had to ask for. Thanks to Luke and Regina, Ben, Max and Jessi, Michelle, Amanda, Julie, Colleen, and the others who’ve been there to help me through.
I’ve been maxing out my physical credit, paying off the balances a little at a time, but never making any headway since I keep overdrafting. It’s tough maintaining credibility when you have to tell your boss you can’t do something because you can’t use your hand, you can’t walk, or you’ve suddenly gone blind. It’s embarrassing when you’re with your friends and suddenly can’t lift your fork, take off your coat, get something out of your purse, or your legs drag when you walk because you can’t really feel them. It’s demoralizing when this happens day after day and you still have to find a way to go to work, keep up a house, feed and clean yourself, and find the energy to be joyful and grateful to be alive. This is barely surviving, I wouldn’t really call it being “alive” most days.
Try going to a doctor’s appointment and having to list everything that’s wrong. Try asking for a new medication because the one you tried last didn’t do anything for the pain and you’re still not sleeping. What about when you can name all the narcotics you’ve taken and how each one does or doesn’t work, and then all the nerve drugs and muscle relaxers they recommend (even the expensive or experimental drugs), and then the other random anti-depressants or NSAIDs that they give in weird doses to help with things they’re not principally designed for? When you open a bottle and pray that you get SOMEthing to work, even it is just a placebo effect today because GOD DAMN I’d really like to be able to finish getting through my inbox and sending out all those reports and maybe washing dishes today? For a little while you’re motivated to prove to yourself that you can succeed and be productive despite the situation. After a while it only makes things worse.
My appointment with the neurologist is next week. Hopefully they’ll do a test where we see something and can start treating what’s wrong instead of throwing pills at it hoping I can find a way to be pain-free or at least sleep. I would love nothing more than not having to go to more doctor’s appointments, undergo more tests, become a specimen in a petri dish ever again. When I have to re-tell the story of the last 4.5 years the humanity of my struggle gets sucked right out for the price of a good story. I want to cry right now just anticipating the next visit.
In the short term I pray I can deal with the Cripple Adventures a little longer, for the sake of my career. Even if I can’t rescue this one I’ll be able to find another. Every single day in my body is a nightmare, though, and I can’t laugh about it anymore. Maybe in the future again, but not now.
Meanwhile, please consider that all the people who look “normal” might still have a personal struggle. Disability takes many different forms, whether you can see it or not. I don’t want pity, I’m already recriminating myself for not being able to push through by the sheer force of will and stubbornness. I just want to be able to get through the day without having to defend my limitations.
Pirate In the Desert 