From one of the ALS-related Facebook groups I follow:
Oof. It goes on to land on a positive, carpe diem note, but the message is just so consumed by sadness. Posts to these groups (often caregivers, family members, friends, and sometimes the pALS themselves) frequently use words like: horrific, terrible, tragic, devastating, heartbreaking, awful, cruel, etc. to describe ALS.
My mind was going down a similar negative road a couple of weeks ago when I posted that semi-cryptic message on Facebook about having a rough day. I was in a funk all day about how hard it was getting around our office — navigating the parking garage, falling 5 minutes after arriving and security insisting on writing up the “incident,” the walker getting snagged on rugs and sidewalk cracks, trying to figure out how to pull open the door and then get through with the walker (just picture that for a second)…then going home and working through the wills paperwork with DP answering questions about life support, organ donation, and burial v. cremation. It wrecked both of us and the migraine that had been stewing all day finally blew up and I had to take a nap at 9pm.
But when I woke up a couple of hours later and looked at everyone who bought Team Drea shirts and started sending sweet, supportive notes and messages on my wall after I posted about my rough day, the funk started to lift.
In trying to sort out my emotions, I realized that I just can’t internalize all the negative words. This disease impacts almost every single thing I do during the day and is what I think about most. I just can’t let those depressing adjectives color every one of my daily experiences. I just can’t handle the narrative.
Plus, my life doesn’t really fit that narrative anyway. ALS sucks and I wish with all my heart it would disappear, but I can’t discount all the love, support, and amazing experiences that have happened this year because of it.
Let me tread lightly here. I am NOT criticizing or passing judgement on the FB posters. Everyone is entitled to their feelings — and I believe they are expressing the truest, deepest of all raw emotions in their words. They have all been through so, so much and they have endured much later stages of the disease than I have.
Besides, everyone has good days and bad days when they’re trying to cope.
I keep coming back to a TED Radio Hour I heard recently entitled Quiet. One story is about a man named John Francis who voluntarily stopped talking for 17 years. He realized he was speaking defensively all the time, listening just long enough to know what he thought the other person was going to say, then tuning out to focus on his rebuttal. His story is about learning to listen: to others, to nature, to himself, and to silence.
So all this time I’ve been worrying about losing my voice and this guy chooses not to talk??
But then I realized maybe it comes down to choice after all. I can’t choose not to have ALS, but I can choose the narrative I tell myself about it. Instead of what I said in October:
[As ALS progresses], their minds stay fully intact, forcing them to watch as they lose the ability to walk, talk, eat, swallow, and eventually, breathe.
I can try to remember the words of my pal Jim Valvano at the end of his 1993 ESPY speech, just weeks before he passed away from bone cancer:
“Cancer can take away all my physical abilities. It cannot touch my mind, it cannot touch my heart and it cannot touch my soul. And those three things are going to carry on forever.”
Thanks for helping me see that, friends 🙂
Andrea, you write so honestly and beautifully…reminding me how Jon wrote as he went through the stages of ALS…Please know we love you and think of you every day!
bmom and bdad
Thanks, Mary Ann! I wondered what you would think because I know you've seen it all the way through and still miss Jon so much every day. Love you too!
Andrea, I would echo the comments above, particularly about your honesty. Please let me know how I can purchase a T-shirt (or 3!) thx, Arlova
Thanks, Arlova! We'll do another order in 2015. I'll make sure you know about it 🙂