In October 2021, I was diagnosed with a rare, possibly life-threatening autoimmune disease called Myasthenia gravis. Some people said I had to “reinvent myself,” because indeed I could not, and still cannot, do so many things that used to make me happy or proud or joyful. “You gotta change your mindset,” they said.

Actually, I had to change many mindsets. It took work. I’d change one, and it would change back to the old one. Painful. I’d give up. Then surrender. Then be back on track. Vigilance. Resilience. Hope. Here are some highlights.

OLD, USELESS MINDSET:

Thinking doctors are devils or irrefutable heroes.

NEW, HELPFUL MINDSET:

Self-talk: Doctors could help me! I listen! At the doctor’s office, maybe Sensory Imagery: Imagine the doctor is my best friend, Anna. Remember her laugh, her haircut, etc. So, I relax with my doctor. Or maybe put a note in my pocket reading, “Don’t expect doctors always to have the right answers—” to avoid disappointment.

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OLD, USELESS MINDSET:

I’M NOT SICK. Really?! Because I need to address my condition, do my exercises, take the often-disgusting medications – ideally without resentment.

NEW HELPFUL MINDSET:

Optimism Without Denial. I admit I’m sick, take the necessary pills and procedures, then I have a better chance at living a healthy, fulfilling, and thrilling life.

Swallowing a pill, maybe say, “Thank you, pill, for making my bones stronger.” Or “Thank you, little immune booster. My disease compromises my immune system, but with you, I can more safely go out and be with people, an army of antibodies combatting any bacteria or viruses that might be lurking.”

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INITIAL, USELESS MINDSET:

“Poor me, poor me, I’ve lost my old, fabulous life. I am grieving, it’s so hard.”

HEALTHY MINDSET:

Pain is inevitable, suffering is not. Grieve and get on with it.

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STUPID OLD MINDSET:

Not doing exercises to strengthen my weak muscles – “Myasthenia,” Greek for “weak muscles.” Despite my being starved for human connection, often after two hours, I’m not only exhausted, but also I can barely be heard.

At a friend’s anniversary celebration (I introduced her to her husband fifty years ago!), I had to leave early, my energy crashing, voice barely audible. After two hours in the noisy restaurant, I left before the main course. I texted my friend how mortified I was about leaving early. I felt shame.

HAPPY NEW MINDSET:

My friend texted back, “No worries! Of course! We love you no matter what.” Mantra: The people who matter love me with my autoimmune disease, just as they loved me without it. No shame, Jane!

Let’s cheer for my staying two hours at the party! I’m not a Fast Race Car anymore. Maybe just an Old-Fashioned Trolley. I could enjoy the ride. And see the sights!

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STUPID VOCAL MINDSET:

Poor me! I don’t have the vocal stamina I used to. In the old days, I did my two-hour one-woman plays in front of 2000 people. On Broadway. At Lincoln Center. Am I too depressed to do my vocal exercises?

NEW, INTELLIGENT MINDSET:

I do my vocal exercises, try Sensory Imagery: Imagine myself singing, which I used to love to do. Even Opera. My voice sounds strong, my body feels alive. I hear the rich tones – alto, soprano, full of feeling. Even on key…I WILL GET THERE.

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COUNTERPRODUCTIVE MINDSET:

I DON’T WANT TO GO TO YET ANOTHER PHYSICAL THERAPIST! My doctor wants me to go so my muscles get stronger. I can’t even open an unassuming bottle of soda.

HAPPY HEALTHY MINDSET:

I make an appointment with a physical therapist! Maybe imagine myself walking on the beach – legs strong, alive. Feel the wind on my face, the sand under my feet. Harvard studies show how marshalling the senses to remember something – for example, Peaceful – can have the body and mind feeling – Peaceful!

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UNHEALTHY FOOD MINDSET:

I live alone, will sometimes eat in a hurry, standing up. Of course, I’m depressed, I’m probably unconsciously mourning my old exciting life in restaurants, now not allowed. I skip meals.

HEALTHIER FOOD MINDSET:

Say a prayer before I eat. Remind myself how blessed I am to have healthy food, clean water. Really taste my food. Get food I really love. Rejoice. Give thanks. And Eat.

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UNHEALTHY MINDSET:

Tantrum! Poor me. I used to be able to do four podcasts a day. Now just one knocks me out. Plus, I lose my voice after an hour.

HEALTHIER MINDSET:

Let me make today’s podcast The Best I Ever Did. And be grateful I can talk. Some people with my disease cannot.

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OLD, UNHEALTHY MINDSET:

I hate the intermittent total exhaustion of my disease. It comes and goes when I least expect it.

NEW, HAPPY MINDSET:

I accept the uncertainty. Up and down. Up and down. Like the roller coaster rides I used to go on with my father, and we just accepted we’d be up one minute and down another. Most prudent would be to schedule intermittent rest periods. Replenish my energy before I crash.

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OLD, UNHEALTHY MINDSET:

I’m angry, doubt the efficacy of the medicines I take. I’VE ALREADY HAD TOO MANY! Vyvgard, Cellcept, IVIG infusions, Mestinon, etc. Now, Rystiggo, and of course, the ever-faithful Prednisone.

HAPPY, HEALTHIER MINDSET:

I thank the universe for medical research, coming up with even life-saving cures, and the medicines that actually stop my double, triple, and blurry vision.

Instead of resenting the number of supplements I take, and almost choking on all of them, let me focus on each, for example, on the “AlgaeCal” that strengthens my bones! So I can walk without pain! So I can still dance!

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UNHAPPY ANGER MINDSET:

I’m angry, but don’t want to acknowledge it. My upbringing and much of society frowns on a little girl, or a young woman, or an old woman, or even men, ranting and raving.

MINDSET SOLUTION:

Do not ignore impulses to tantrum! Kick! Scream! I’m often slow to fully vent and rant. But when I do, I feel so much better! I try and honor my anger, remember there’s fear underneath, grief under that. Sometimes, only with a tantrum can I arrive at a mindset of gratitude and peace. Science shows that Gratitude not only balances our wiring but also strengthens our bodies.

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OLD, MOLDY MINDSET:

Poor me! Victim me! All the symptoms I’ve had – couldn’t open my hands, lift my arms, or chew. My neck muscles were sometimes so weak that I had trouble lifting my head. And they could return. And if my lung muscles don’t work, I could die. BEST NOT TO GO DOWN THAT RABBIT HOLE.

NEW, HAPPIEST MINDSET:

Let me be a warrior. Fight for better medicine, if I still don’t feel how I want to feel. The opposite of “Poor Me” is “Happy, Lucky Me,” which is what we feel when our serotonin shows up. The Pleasure Hormone, which strengthens our immune systems.

So what gives me pleasure? My dog kissing my face. Caring for my roses. What makes you smile? So you can live your fullest, healthiest, most joyful life. Make a list. If you’re not smiling at whatever you’ve just written, it doesn’t belong on the list.

AUTHOR:

Jane Marla Robbins, author of Myasthenia Gravis: The Musical, My Medical, Hysterical, Poetical, Comical, 25-Month Memoir