As I weave a mini-series of posts around the choice list I wrote in December, how appropriate that listening played a significant role in bringing light, peace, and clarity to my life right now.
For the last few weeks I’ve danced with the realization that
an existential crisis is a terrible thing to waste.
The odd symptoms began at the Art for Heaven’s Sake show in early October. If you look at that set of pictures, you’ll notice a difference in the smile flashing in my side-bar portrait and the ones taken at the show. I felt it at the time — a sort of half smile that seemed closer to a sneer. Just tired?
Then swallowing soup got tricky. Later blowing on the dying fire embers proved challenging. As I did the backstroke, I worked to hold my face above water and found my eyelids a bit leaky when I tried closing them eyes against the chlorine. Occasionally, my grip seemed wimpy — maybe because of recovering from frozen shoulder? — or my fingers wouldn’t respond in the usual way. I developed new ways to type or just settled for shorter email and blog posts. All odd and sporadic.
It got weird in early December when my voice went nasal and I wasn’t trying to impersonate Marge Simpson. It didn’t last long but it could switch on at any moment. Or sometime, I lost my crisp drama-school diction and lapsed into a lateral lisp.
Before the end of the year, I had a check-up with my physician. She remembered me from my annual exam — four years ago. A-hem. I pulled out my notes and ran through my list of odd-sporadic symptoms. She listened. After my pelvic check and breast exam — is there a discount for size? — we talked a bit more and I dressed. I left the office with referrals for a mammogram, blood work, and an appointment with the neurologist.
I listened to my body. My doctor listened to me.
On New Year’s day we joined friends for a Mexican potluck and re-runs of the Rose Parade. Naturally, the perfect setting to recount my symptoms. Thankfully, our host Jane is a long-time friend AND a physician. She listened and gave me the best advice: be your own advocate. Don’t wait for someone else to move on this.
I listened to Jane. I asked to be put on the neurologist’s waiting list and let my GP doctor know how far out my appointment was. Advocating for myself worked. My doc must have bugged the scheduler too. Instead of waiting until March, I met my neurologist — a 6’6″ cross between Panama Jack and Mr. Clean wearing round granny glasses — in late January. I rolled through my maladies, including the frozen shoulder stuff. He focused on the limited responsiveness in my fingers and lack of arm strength. Mr. P. Jack Clean ruled out his specialty: Multiple Sclerosis. Well, good. That hadn’t been on my radar. He scheduled an EMG.
In the interim I began a list of things I miss:
- Flashing my ear-to-ear smile. Or generally expressing joy with my face.
- Slight curves that usually cushion my spare frame.
- Moving food around my mouth and swallowing with automatic ease. (I explain to friends, “I can eat or I can talk. I can’t manage both.”)
- Feeling relaxed when facing the combination of food and friends. Eating with Ken is fine, but I think it distresses him when I leave a meal coughing.
To keep myself present, I think thankful thoughts, “What luck I don’t teach any more; lecturing would be dicey.” And, “I’m a good listener. Being quiet could work for me.” “How great that my schedule allows time to rest and time to eat very slowly.”
But things got a bit horrible a few weeks ago. I accepted a dinner invitation at a restaurant with dear friends and new acquaintances; I felt hopeful. I may as well have played the Lottery. The fifth bite of a savory feast would not go down. At all. My large linen napkins looked attractive. I kept chewing. A sip of water made things worse. Frustration welled up from my feet. In a thick-tongued whisper I told Ken my dilemma. I wanted to eat and join in the conversation. I couldn’t. Across the table, my friend’s look of distress pierced me. I did my best to smile reassuringly.
The awful evening eventually wound down. On the drive home I told Ken, “I need to cry. I will be all right. But I need to let this out.” I cried until we pulled into our drive. Dried my tears and went to bed.
The next day I advocated for myself and set up another appointment with my doctor.
Three things happened at that appointment — admitting her own bafflement, my doc 1) referred me to the ear, nose, and throat specialist, 2) ordered another blood test, and 3) told me, “This is not a diagnosis, but I’ve printed out some information on ALS. Read it and see if you think your experience aligns with these symptoms.”
Spoiler: I live.
But for the next two weeks I didn’t know it for sure. Half of my symptoms matched those related to ALS. Except for Ken and my physical therapy team, I only shared the darkness with three discreet, no-drama friends. Rather than ignoring or venting, I spent time listening to my soul.
After all, an existential crisis is a terrible thing to waste.
Instead of lying at home in a heap, I decided my odds were fair. I kept walking, going to class, writing, painting, being present. This helped my see the beauty that floods my world.
Mid-way through limbo, Ken and I spent a day at Joshua Tree National Park.
I soaked up the sun and reviewed a few questions that bubbled up in me:
- If this is my exit cue, how do I want to go? Quietly into the night? Campaigning for a cure? Sobbing and begging? Fighting with all I’ve got?
- How can I go with grace? For me. For Ken. For our children.
- Is knowing bad news for certain better than uncertainty?
In a brief and bitter swerve into pointless scarcity thinking, I wondered
- How come a fit, non-smoking, pacifist vegetarian gets this?
- Have I passed on some demon gene to my darlings?
- Why aren’t I more like Mother Teresa?
- Does this mean I can stop worrying about student loan payments?
But most important I wondered:
Have I lived the life I wanted?
Listening to my soul, I realized, yes.
Yes, this life is the life I want.
I thought I had another fifty years to release love into my world. And at least half of those years devoted to creative, productive, vibrant work. But, if all I get is this first fifty, I’m full of gratitude. Gratitude for experiencing patient love — love that celebrates whole-heartedly, rather than approves conditionally. Gratitude for learning how to choose, embrace, and care for myself. Catching a glimpse of the love that casts out fear. Beliefs that comfort me rather than fill me with anxiety. A sense that everything works for the best. Eventually. Gratitude for deep listening. Abiding. Being enough.
This thinking meant that each night I nestled close to my true love and slept with peaceful abandon.
Last Friday I sat cooling my heels in an exam room waiting to see the ENT specialist. The door opened and my family doc walked in. She was beaming. She’d just received the results from that second blood test. I don’t have ALS. It’s something else. Something that is not the end.
Life blurred a bit as this wisp of grace, a glittering 2nd Chance alighted on me.
I stood and hugged her. After she left I cried. Happy, humbled, breathless tears. I called Ken. “You can stop thinking about pushing me around in a wheelchair!” Yay. Beyond Yay! I sent brief texts to the friends who had walked with me through the dark, heavy weight of limbo. “Wonderful news. Not ALS!! I’ll be around for a while.”
While rare, my condition — myasthenia gravis — is treatable. Many patients can even achieve sustained remission. I still have a battery of tests before the neurologist prescribes my meds, but according to Mr. P. Jack Clean, I’ll, “live forever and ever!”
That, of course, means a different kind of crisis entirely. Delightful.
You’re company on this journey fills me with gratitude. Thank you! Here’s to listening and to life!