I recently stepped up my Twitter activity in the name of engaging more with people with MS. Sure, a piece of it has to do with wanting more eyes on this here blog, but a lot of it has to do with connecting with the MS community. I avoided associating myself with anyone with MS for years, as if spending time with them would put me on the fast train to disability. Joke’s on me! Being disabled made me crave the contact I had shunned.
Whilst Twittering one morning I saw this:
“THE TIPPING-POINT FOR NON-RECOVERY IS 43 YEARS OF AGE“
Some things worth noting:
- I am 45.
- Gavin Giovannoni is not some alarmist hack. He is one of a handful of people I follow for good MS information.
- A quick review of MS: my immune system attacks the myelin sheath around the nerve cells in my brain and spinal column, which is a bit like stripping the insulation on a wire. Signals don’t get through like they used to, leading to a plethora of symptoms.
- The drugs I’m on (and all current disease-modifiers) are aimed at slowing progression, not repairing damage. Remyelination and recovered function are the big things people with MS hope for.
Reading that tweet was a big gut punch to my softest hope-iest parts. And I was reminded of my favorite polarity. Hope::Reality
“Your favorite what now?” Let me explain. Polarities are “interdependent, yet seemingly opposite, states that must coexist for success.” Here’s a simple one.
Breathing in:: Breathing out
Can’t have one without the other, and, in the case of breathing, you’d quite literally die if you chose just one.
Most polarities aren’t quite so simple. For example, in the workplace, structure :: flexibility is a common tension. Without structure many folks would flounder, but without flexibility you can’t meet evolving customer needs–or the needs of individual employees. Each pole has its benefits as well as its consequences of overuse. And often, we totally miss the downsides when we’re swimming in our preferred pole. (The brilliant folks at Andiron made a fantastic short video explaining polarities better than I ever could.)
At Cultivating Leadership, we teach leaders to recognize and manage polarities to help them thrive in complexity. You know what’s really complex? Living with Multiple Sclerosis. Hallmarks of complexity are unpredictability, non-evident cause-and-effect, and constant change. Check, check, and check! I wake up one day with a spring in my step. The next, I resemble Quasimodo. Working out can energize or exhaust me. A social event with alcohol can make me invincible for the night or collapsed in the corner sipping water in hopes of minimizing how many times someone must walk me to the bathroom. It would be easy to throw my arms up in exasperation and say “screw it, who wants pie?” but I enjoy life a little too much for that. So instead of giving up, I’m taking a look at the system with a polarity map.
As you can likely tell, benefits of each pole go on top. Consequences of overuse go below. I like to think of myself as pretty balanced with this pair’s benefits. On the hope side, I take drugs and supplements in hopes of slowing my progression. I am willing to try most any treatment that isn’t too costly or dangerous. And I keep a fairly sunny disposition. A grounding in reality ensures I don’t chase miracle cures, nor do I do anything dumb like try to walk outside without a mobility device. It also motivated me to leave my job managing events for something less physically demanding (which led to me writing about leadership instead of running around restocking bars when they run out of Pellegrino).
In spite of my relative good cheer, small things can push me into reality’s overuses. Just barely making it to the bathroom on time. Realizing I can’t attend a drag show because the venue has stairs. A tweet from an MS expert about the unlikelihood of repairing damage at the geriatric age of 45. All of these things remind me that some big, sexy doors have closed for me. Probably forever.
Hope and reality resonate for me not just in my internal landscape. So much of the rhetoric online amongst MSers falls on the side of hope. There are constant cries of:
“I have MS but it doesn’t have me!”
“We’ve never been closer to a cure!”*
“This diet will change everything for you!”
These sentiments are lovely (barring the diet bit–that’s rubbish), but they leave out a huge part of what’s actually going on. And I worry that Suzy Sunshining one’s way through means living a less full life. One of the hazards of living in one side of a polarity is that we identify with it so strongly we cannot see the overuse potential.
Of course, the internet is full of Debbie Downers, too.
“Why even bother taking medicine?”
“There’s no hope!”
“I can’t do anything I used to!”
Again, I see the truth here. Especially on exercise days. Still, there is far too much good in the world and my life for me to want to join Team Reality’s downside wallow.
Three months out from the tweet that shook me, I am feeling pretty hope-y. I’m moving well. I even made dinner on my own last night, something I haven’t done in months. I also broke a mug and a handmade bowl recently, which nearly sent me nosediving into reality’s downsides. I am not saying understanding polarities saved my life, but having a map for this constantly present tension does help me notice when I get off course. So here’s to awareness… and pole dancing.
*The really irritating thing about this sentiment is that it’s true whether a cure comes in 5 years or 500!