Rediscovering a New "Normal"
Last updated: June 2023
When I received my diagnosis of myasthenia gravis (MG) in February of 2019, everything changed. My full and busy life came to a halting stop. As my symptoms progressed, my future felt bleak.
My previously healthy body suddenly could not handle everything that had piled on my plate over the years. My marriage, motherhood, career, and creative pursuits all felt the strain of this new diagnosis.
Trying to accept myself
As the months went on, it started to dawn on me that I could never return to my "normal" life. Even if I were to go into remission my outlook and perspective on life had been forever altered. A cloud of fear shrouded my future.
I stepped into a world of disability where I could not even take care of my basic needs on my own. I relied on my family and community to keep me going.
Would I be able to hold my son once more before he got too big to be carried? Could I get a job again? Would I ever be able to sing again?
There was great tension between who I once was and who I was becoming. In the suffering and grief, I painfully tried to accept myself in my weakness. I wanted to give myself grace and love in this time of doubt, fear, and insecurity.
Fighting to be happy
As I learned to accept my new life, a new tension arose. Each day was a fight for contentment as I struggled to get through.
I was swimming in grief and depression, forcing myself up for quick gulps of hope before finding myself drowning again.
I dreaded each day, knowing I would face the same battles; waking up breathless, caring for my 2 demanding toddlers, hanging on until naptime, dinner, and collapsing at bedtime.
I lived like this for 2 years. Hope started trickling in again as I started a new treatment. I started feeling better each day, with my energy returning, my strength returning, and finally my sight.
Envisioning my future
In the 3 months between my treatment and medical remission, I started to dream again. I started envisioning a vibrant future, full of memorable experiences.
As I let hope rise, I started looking forward to each day again. Instead of dreading each morning, I woke up full of gratitude.
So much had changed since my initial diagnosis. I went through the most challenging season of my life during the pandemic. As the world was re-opening, I saw my family and friends start to live their "normal" lives again.
Embracing each day
I felt lost as I tried to discover my "normal." Even though I had my physical health back, questions raced through my mind. How long would it be until my symptoms came back? What if my treatment stopped working?
Though the future is uncertain, I am learning to find peace in the uncertainty. Life is never truly certain, and "normal" is never sure. Living with this in mind helps me face each day with gratitude and curiosity.
Instead of expecting a normal life, I'm learning to embrace what each day brings. I hope my "normal" becomes doing my best and making the most of each day, being kind to myself and those around me in the process, no matter what each day looks and feels like.
My most frustrating MG symptom is _____.