Diagnosis anniversary: Where I was then, where I am now

Today, May 15, marks the 11-year anniversary of the day I received my official multiple sclerosis diagnosis. (I’ve talked about the reason why anyone should want to remember this kind of date elsewhere.)

What I want to take a look at this week is where I was then, and where I am now.

THEN

In May 2013, I had two kids in high school (one of them a junior, so it was a rough year). I was in polysomnography school putting in my hours as a sleep technology trainee at the local hospital. That meant several night shifts each week, from 7pm to 7am, and sleeping during the days, learning on the job. Somewhere in there, I served as the board president for the local water polo club and was a band and dance mom.

Was I exhausted? You bet. Even without a neurological condition creeping in on me, I was spent.

Aside from the obvious fatigue, I had various symptoms that exhausted healthy people normally don’t experience:

• tingling sensations across my body
• a tremor in my left leg and my left arm (not coordinated!)
• two kinds of aphasia that came in and out (inability to read, inability to finish sentences)
• relentless tinnitus
• a crooked gait (couldn’t walk straight)
• problems with continence
• incredibly painful muscle spasms in my calves and my ribcage
• blurring vision not related to eyesight or eye fatigue
• electrical zaps (in my arms, legs, feet, and hands)
• migraines
• feeling like my body was on fire (especially the tops of my feet)
• memory problems
• wordfinding issues
• slurring speech
• struggles with handwriting

Of course, if you’ve read my book, Intention Tremor, you’ll have read poems and essays that touch on many of these challenges.

NOW

Fast-forward 11 years. Which of these are still bedeviling me?

• I still get the tingles but have learned to live with them.
• The tremor only happens in my leg when I’m on stage (as a poet or doing some sort of theater stuff). I’ve since learned how to skip the podium and just project my voice or use a mic and pace the stage instead.
• Very rarely (when I’m physically exhausted) do I experience brief periods when I can’t read or speak, but they still happen.
• The tinnitus remains relentless.
• The spasms and migraines come and go and are usually the outcome of overdoing things.
• I sometimes have blurry vision, zaps, overheating, memory lapses, wordfinding issues, and slurred or broken speech—also linked to fatigue—but this is much more rare.
• The rest (issues with gait, continence, handwriting) have mostly subsided as I continue with remission.

Do I call this a win? An improvement? Yes!

I mean, where am I now?

• I’ve retired from 10 years’ success working in sleep technology and patient advocacy/education, where I did very well and found my joy as a “helper.”
• My kids are grown and flown the nest to their own adventures and I couldn’t be more proud of them.
• I’ve started and maintain a little garden empire right here in my yard.
• I meditate and hike and kayak.
• I have become a filmmaker and podcaster, studied a little bit of theater and playwriting, and have published two books and countless stories, poems, and essays, with more on the way.

“Look for the helpers.” —Fred Rogers’ mom

The deal with MS is this: Once the damage is done, the symptoms linked to that damage are with you more or less forever.

If I’m not getting worse, then yippee-ky-ay! On to more adventures for me! If you have a chance to fully live, then by gum, do it!

This is why preventing disease progression is so important; we can’t predict where and when MS might strike in the brain again. If it does, new and irreversible symptoms could emerge. This is what we hope to avoid with treatment.

But with proper therapies (pharmaceutical, complementary, or alternative) and good self-care, a lot of these symptoms might be avoided or attenuated so you can get back to the business of living.

For me, self-care looks like:

• knowing when to say no
• paying special attention to diet/hydration/exercise
• limiting screens
• planning for recovery and rest
• indulging, whenever possible, in therapeutic practices (Epsom salt baths, yoga, meditation, massage)
• recognizing and respecting my physical, emotional, and neurological limitations

I say might because it depends a great deal on the type of MS you have. Mine is thankfully in the relapsing remitting category and has not been “upgraded” to a progressive form (not yet, anyway).

So I’ll take the win, stay optimistic, and call it a happy anniversary because, in many ways I’m living more richly in spite of my MS (or perhaps because I have it).