ALS seems to have withered all the muscles in Susan’s body except her smile muscles. She smiles and smiles and smiles even though her husband, John, had to hold the ink pad and help her roll her inked thumb on the title page of her new book, Until I Say Goodbye, at a book signing last Saturday.
Susan, our colleague at The Palm Beach Post, is dying. For several years we knew something was wrong but Susan said nothing. I remember CNN interviewing her in the newsroom and listening to her answering questions so slowly – each word deliberately spoken with such difficulty. “Is Susan okay?” we asked over and over. No one knew anything, which was odd because reporters are magnificent gossips. We are paid and trained to pay attention to the smallest detail and listen to every conversation within earshot. We can read upside down.
There was no goodbye party for Susan. One day she left and never came back. We didn’t gather in the newsroom at 3 pm on a Friday, listen to her editors tell irreverent stories about her career and then eat crappy cake with waxy frosting from the cafeteria. Nope. She was just gone – her cubicle empty but filled with mounds of files and paperwork acquired -in Susan’s case – over a decade of sitting in courtrooms and covering a relentless stream of human depravity and sorrow.
She did it so well. Always in high-heels. Always in sleek, stylish fashion.
Months later, when she officially retired, she sent us a letter. Now, you have to understand that Susan is a brilliant writer. I mean, a really, really great writer. She won all kinds of awards and I read her stories and thought, damn, I wish I could write like that. She had her shit together. A handsome husband, three young kids, a house in a cool neighborhood, a pool, talent and those sexy heels – even when she was pregnant.
Why isn’t this woman depressed? If anyone on this planet is entitled to being depressed – an odd concept – it is Susan. She has – and perhaps still is – taking an antidepressant:
“Recently I switched to liquid Lexapro, no longer able to swallow a pill. It’s no less bitter, bit I would gargle garlic if it helped me feel better.
Is there a stigma to admitting depression? To admitting that I have moments of anger and despair? If so, I choose to ignore it, because my mind is healthy.
It is like running a marathon. Even trained, the marathon is grueling. But you complete it.
Even on antidepressants, ALS is devastating. But I can complete it.
For depression comes less frequently now. Since my diagnosis. Since acceptance. It swoops in like a butterfly, landing silently as they do no bushes near the Chickee hut. I watch it flutter, admiring the complexity. I feels its weight for a moment, then it’s gone.”
I tried to read Susan’s book slowly – just one chapter at night before falling asleep. But last night I said, “screw it”, stayed up and finished the whole thing. I stayed up not just because it is a beautifully written book and I know many of the characters, I want to know how she has avoided falling into the ultimate black hole, which I’m sure I would have done after exhausting what I’m sure would be an epic display of rage.
There has to be more than just the antidepressants.
There is. Susan calls it “getting my Zen on.” Somehow, Susan seems to have been able to accept her fate and as she loses control over her body, she still is the master of her mind. She controls her thinking.
“I deeply believe we are the masters of our minds. That healthy, we can choose how we feel. But we are also our minds’ lone caretakers, and we must keep them healthy. Now I practice my slow breathing, getting my Zen. Living with joy.”
Susan’s buffer against depression is her belief that by not resisting the power of nature, she can achieve peace. When confronted with disappointment, whether ALS or the refusal of the Northern Lights to appear on her bucket-list trip to the arctic, she responds with “nature is perfect.”
I have depression and I have been in some very large, black holes. The last time, nearly 8 years ago, was the largest and deepest. Since then, I have made it my mission to do whatever I can to prevent another major depression. I’m all about prevention. I take my medications. I visit my nurse practitioner every three months for a check-up. I do not drink – at all – or use drugs. I changed my diet – no gluten, no dairy and little sugar.
I sleep as much and as often as possible. I exercise. I sit still. I did that inner-child stuff. I believe in cognitive-behavioral therapy and neural plasticity. But I am a visual learner and all the self-help books, ice cream-less years and hugging my inner child has not affected me like watching Susan living joyfully with ALS.
I do not look to Susan’s situation when I am down and use it to slap myself into guilt-riddled reality: “You have nothing to complain about! Just look at Susan!!!” I have learned not to discount my feelings. Telling someone to pull themselves up by their bootstraps because someone else has it worse than them is about the worst thing you can say to someone with depression.
Instead, I look to Susan as a teacher – the kind who can still joke about hanging pencils out of her nostrils in school and writing a best-selling book on her iPhone with just her right thumb because her nine-other fingers have failed her. Susan is teaching me to aspire to being joyful.
Joy and ALS – two words that don’t belong together, unless you are Susan.
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Last reviewed: 20 Mar 2013