At the end of 2007 I decided to quit my job in the software industry and do some major soul searching about what to do with the next phase of my life. I felt like I’d been living on autopilot for too long, that I was struggling too hard to fit everything I cared about into my life, and that I was spending far too much time as an insomniac stressball as a result.
I haven’t had a breather from my career since I started working my way through college at the age of 18. The cusp of 30 seemed like the perfect time to travel, indulge some of my artistic dreams, and ponder new career options with a rested and tranquil mind. So I saved up some money, arranged my life so that I could handle a few months of unemployment, and took the scary plunge into non-corporate life. It was exciting to contemplate all the things there are to do in this world. All I needed to do was figure out how to pick a reasonable number of them to pursue.
A couple of weeks into my vacation, I started to experience some funny physical symptoms: numbness on the skin of my legs that spread rapidly to cover 3/4 of the thighs and shins; tingling in the fingertips; sudden unexplained muscle weakness in the major muscle groups. I went from biking 10-12 miles a couple of times a week to barely being able to propel my bike on a flat surface.
I was afraid I’d pinched a nerve in my back or neck again. Most of my issues could easily result from back and neck injuries. Then I read about Lhermitte’s Sign. This is a strange electrical feeling that runs from the spine to the feet when I bend my head forward. I had attributed it to my phantom back injury but it is a classic hallmark of multiple sclerosis.
After reading that article I got the earliest possible appointment with my doctor and then spent a weekend freaking out over the fact that for the first time in my life, I might be really, really sick.
Many people, including my doctor, tried to talk me down and convince me that the likeliest cause of my symptoms is a pinched nerve or slipped disc. I was scheduled for a spinal MRI at the end of last week and in the meantime the weakness spread to my hands. Now my fingers are weak and uncoordinated enough that I type at half my former rate and I have had to temporarily halt many of my creative hobbies such as knitting.
My MRI was last Thursday and I knew something was wrong before it was over. It was scheduled to last 90 minutes and at the end of that time the radiologist pulled me out, told me they had seen something “odd”, and that they wanted to inject me with contrast dye and redo half of the pictures. So, I got an IV and 40 more minutes in the claustrophobic tube. (Side note: is sadism a prerequisite for a career in radiology? Two hours in a tiny, tiny tube with a jackhammer in my ears and no opportunity to pee made my day, let me tell you).
After the scan the radiologist wouldn’t tell me anything except that I should talk to my doctor. I got a call from her late Friday afternoon. The diagnosis: multiple sclerosis. There is visible nerve damage and scarring on my upper spinal nerves. Now I am looking at a flurry of further tests and potential therapies. I have a brain MRI scheduled for next Friday that will shed more light on the progression and severity of my MS damage. I will need a lumbar puncture soon, too, which will likely put me out of commission for holiday celebrations.
After that, I’ll consult with a neurologist who will give me what little prognostication and treatment that today’s medical science has in store for MS sufferers. I dutifully called the neurologist to whom my doctor referred me and was told that Jan 31 is the earliest they can fit me in. That’s pretty aggravating – my case was supposed to be elevated in priority so that I can get in this week while there’s still a chance of alleviating permanent damage from this attack. So I am leaving daily messages with everyone I can think of in hopes that something can be done before everybody disappears for Christmas and New Years.
In the meantime, I’m trying to assimilate the fact that my life will never be what I had hoped it to be. I am barred from travel in the immediate future until my initial round of tests/treatments are done and until I know how disabled I will be at the end of this attack (that is, if the attack stops progressing… a small number of unfortunate MS suffers never experience remissions, and my attack has been getting worse for a lot longer than an average first attack).
Instead of pursuing freelance work or developing my artistic visions, I will need to seek out a job with good health insurance and manageable stress levels very soon. My treatments will run several thousand dollars a month and keeping stress on an even keel is critical to slowing the progression of ms. Great benefits and reasonable stress are typically antithetical in the corporate world but if you happen to know of something that fits the bill, please let me know.
All of the creative things that I love to do with my life require the use of my hands. I knit, I paint, I do glasswork, I type on computers. Given that my hands are going first, I am struggling with much fear over my quality of life in the coming years.
The outpouring of love and support from my family and friends has been tremendous. If there is any bright spot to this bloody mess, it is the visible evidence that the people I know are wonderful, solid people and that I am not alone. I am grateful and I love you all.
Next: how not to handle getting piercings removed/reinserted for an MRI.
