One year ago today, I got a call from my primary care physician telling me that he and the radiologist concurred, that they examined my enhanced MRI and both agreed that I had evidence of lesions on my brain consistent with MS.
Multiple Sclerosis.
I was at a coffee house waiting for my mother in law to be finished with her hair appointment. I was doing homework and had to go outside to take the call because it's a known bad cell zone there. I saw my doc's phone number on the caller ID and left all my stuff at the bar, including my Kindle and my wallet. I couldn't get out of that noisy bar fast enough to hear what he had to say.
I remember my voice being high-pitched and overly loud when I said, upon hearing the news:
"O-o-o...K-a-a-a-y..."
When I'm nervous I laugh or chuckle. I didn't do either. Instead, I took a deep breath and said, "Well, at least it's not a tumor and it's not Parkinson's."
Which the doctor happily confirmed.
Please note, this was the date of my preliminary diagnosis; I still needed to go in for further tests to confirm their findings, so while I was confident that my docs were accurate, I still had a little tiny thread of hope in there that they might be wrong. But those clarifying diagnostic tests were yet weeks away. So... How did I respond in the meantime?
Relief. Finally. An answer.
Denial. Okay, maybe the next, more intense tests will be more conclusive and maybe they were wrong about those white spots on my brain after all.
Fear. Crap! What does this mean? Crap! Crap! Crap!
Resentment. Why now? I just made a huge career change! Now what do I do? Was all this for nothing?
Examination. How long have I had these symptoms? What clusters of symptoms do I remember? What can I find out about MS now, and will scrying WebMD via Google make any of it go away? (No.)
Preparation. Hmmm, time to re-examination the diet, exercise, sleep and other health patterns I control to see how well I can fight back. Because I'm not going to take this lying down.
Sadness. I don't wish I was in a wheelchair, but I do wish people understood that my brain is not working right and I can no longer be 100 percent the person I used to be, which was all intellectual and clever and such. My brain is WHO I AM. My mind is now a steel trap with a lotta holes in it. And that makes me want to cry because I'm a writer and a thinker and a speaker and a teacher and I need my brain to not turn into a sponge because then, WHO WILL I BECOME?
Acceptance. Fine. I have friends with MS, and they are doing okay. I can't change this reality. I can help myself to feel better and to keep the disease from progressing, but I can't make things better by sitting around all day gazing at my navel. I am better off focusing on what's working and what's sustaining me in life, not on the possibilities of what bad things could happen. No reason to curl up into a ball and stop living. I have a great job, a mostly supportive family, amazing friends and, what's that? Remission? Yes, by gum, I think I might be in remission! Count your blessings, wouldja?
Yeah. I lost some sleep, my appetite. I cried. I laughed and made jokes about it. I read WAY TOO MUCH on the Internet. I talked to my friends with MS. I began to interpret every little odd physical feeling as a major symptom. There were days when anxiety built up inside me so much that I couldn't take a full deep breath without thinking I might explode. Always, there was the stinging reality that I could die, not from MS, but like an AIDS patient, from complications of the disease.
And I developed what I call "diagnosis brain," which is kind of like pregnancy or cancer brain... you develop a sudden, irreconcilable awareness that your body is now on a different, one-way journey and there's no going back to that old normal. Suddenly I'm walking around in a new normal, which is not normal at all, but foreign. Think Dorothy and the Wizard of Oz.
Better yet... Did you see Gravity? I felt like I was out in space when I got my diagnosis, like Sandra Bullock, hooked up to a suit, breathing, watching everything stable around me break apart, but still having some hope that there were still anchors out there for me to latch on to. I just had to use everything in my possession to figure out how to do that, while not knowing about what other surprises lay in wait for me (good and bad).
I'm still not sure even this truly captures what it feels like to have diagnosis brain. I'm happy to say that I mostly don't have diagnosis brain a year later. And I'll talk more about that another time.
I'll end this passage saying just this: I am grateful it only took a couple of months to go from preliminary diagnosis to confirmed differential diagnosis. I have friends who are still trying to figure out what is wrong with them. Autoimmune disorders are like that: insidious mimics which are hard to capture in tests. I have two dear friends walking that path right now, and I ache for them, because at least my pathway from the old normal to the new normal was finite. That untethered, out-in-space feeling of limbo is nothing I care to endure again any time soon.
