Last Tuesday, I attended my Chronic Compassion support group for those suffering with illness and pain. An article for us to consider was passed around:
You Don't Look Sick. Hmmm.
I checked in about my burning skin and relentless withdrawal from Gabapentin (tinnitus, anxiety, insomnia). I cried. Meditated. Cried some more.
A 35 year-old woman shared about her recent MS diagnosis. I told her she cannot give up hope. That the best doctors believe Medicine is Art, not Science. It is always evolving. If I had been born in the 40’s or even 50’s, I wouldn’t be here. Dialysis wasn’t even a thing until the 60’s and Cyclosporine (my main pharmaceutical jam) didn’t come into medical use until 1983. I had my first kidney transplant but 5 years later.
Then this woman cried out that she really, really, really believed “they” would figure out what is wrong with me.
And we both cried.
For me, this support group unfolds like a Very Special Episode of our marital hit, “The Emotionalist.” (According to my husband, I am not only the star, but show-runner.) When the article You Don't Look Sick! went around, it reminded me of what I have heard many, many times throughout my decades-long medical career.
“Well, you look great!”
In 1987, I was 18 and was being transferred from the Hospital for Sick Children over to The Toronto Western Hospital. Leaving my beloved, crush-worthy nephrologist Dr. William Balfe was agony. Bill Balfe. Bill Balfe. (Isn’t that fun to say?) Man, I loved him. He was equally supportive of my obsessive love for the all-the-rage, 80’s hair product mousse, as he was my hand-wringing terror over clumps of hair falling from my 15-year old head from the evil drug, Imuran. But I was now legally an adult and had to have my very ADULT illness transferred to an ADULT hospital.
(End Stage Renal Disease (ESRD)? Not so fun to say.)
So on the September morning of my appointment, despite being three months away from dialysis, I Cover Girl-ed up my sallow skin and puffy eyes, donned my shoulder-padded, paisley-green business suit a la “Working Girl,” hot-pink heels, and sprayed my post-moussed, Duran Duran bangs into paralysis.
I was ready to be seen.
At the time, ESRD was getting serious. Headaches. Nausea. Trembling. Brain fog. I told my new nephrologist how tired I was. So tired. Sleeping-12-hours-a-night exhausted. With an invisible roll of his eyes he clipped,
“Oh, all teenagers sleep until noon.”
(This might have been the moment the pilot episode of “The Emotionalist” was born.)
Once my puffy slits began leaking, my ship went down. I could Not. Stop. Crying. Body-shuddering, snotty sobs. God Bless Mum who stepped in to explain, “My daughter is no slacker! She is a winnah!” That I usually operated on six hours of sleep a night. How she managed to be heard over the cacophony that was my snorts, sniffles and wails, I’ll never know.
Along the bumpy 506 streetcar ride home, Mum turned to me and said,
“You look too good. Stop wearing makeup.”
At the time, not wearing makeup was, I don’t know, like not using toilet paper. Gross. Unthinkable. But she had a point. Dr. C. and I would become respectful collaborators as I left ESRD behind, boldly went into transplantation and embarked upon the wide, wide world of side effects. But at the time, he didn’t know me, and did not live inside my body 24/7, 1440 minutes of every freaking day.
That day, I had been seen, but not heard.
The definition of “chronic” is: Persisting for a long time. Some of its synonyms are: Ceaseless, unabating, or dyed-in-the-wool (which makes me picture a blue sheep!) The clear winner: Immedicable (which makes me picture a group of white lab coats scratching their heads in a circle around my hospital bed. Which is just. about. right.)
This brings me to 2017. Both Saturday and Sunday night I had the opportunity to show up, and dress up, for my husband at profoundly special events. Saturday night was the Calvin Klein gown, Bedstemor’s vintage crystals and a red, red lip. Sunday night was the silver number I wore when Kevin gave his heart to Jerusalem one year ago tomorrow.
Saturday night, as I wandered around a magnificent celebration of his cherished and courageous community, I was often told,
“You look beautiful.”
Stretching my red lips wide, I smiled, nodding,
“Thank you. What a wonderful evening!” When what I really wanted to do was throw my arms around said complimentor and sob like that 18 year-old girl who had just lost her nephrologist.
“But I’m in PAIN! Can YOU help me? Do you know who THEY are?”
Sunday night, I sat in the front row at the AJU Whizin Theatre (which, as a friendly tip, is not as fabulous as one might think. Not neck-friendly! Not nice!). As I waited for my husband to take the stage and sing a duet with the Los Angeles Jewish Symphony, my skin flared hot and raw beneath me. And not in the good way. (Well, maybe a little.)
My dress chafed, the backs of my thighs angered from the plush seat below.
Why did I wear this dress? I held my flaring wrists, handcuffs of fire.
I want to scream. Inhaling through my nose, I repeated my mantra. OTHER PEOPLE FEEL THIS. OTHER PEOPLE FEEL THIS. A surprising lack of rustling stretched behind me, and I wondered,
Is anyone here in pain like me?
Then I remembered her. An acquaintance of Kevin’s who was diagnosed with Lupus only last year, her progressed symptoms so bad she is currently on chemotherapy. I spotted her in the orchestra—her beautiful and bespectacled moonface, the cane lying by her instrument’s side. She was here, showing up for her life. I know those drugs. They are devastating and debilitating. She had to be in pain. But she was sitting in her seat, and I was sitting in mine.
And she looked great.
My Mum was right. In the 30 years since that day, not much has changed. I am still a patient. I am still dealing with side effects, and now, chronic pain. But I have learned a lot. I never wear makeup to doctors' appointments. I have fine-tuned the Art of Being a Patient. I go informed. The best doctors don’t mind if I’ve Googled. I bring my old skool Post-It note of questions. I remember that most doctors have never been sick, and choose to believe they want to help. And for the few minutes they see me, it doesn’t help if I’m looking Red-Lip Ready.
It’s still a mixed bag when someone tells me I look great, when I just don’t feel that way. But, I have come to understand that most people will never understand illness and its inherent agonies, in the same way I will never understand what it’s like to walk 5 miles for a bucket for water. Most people jump out of bed and complain if their shower is too hot. I do not.
But I do have running water.
We all have pain, no?
And anyone doing their best to show up for their life no matter what their circumstance looks great to me.
Red lip optional.