How MG has prompted me to make Memorial Day a joyful day
This year, I'm honoring those who've supported me on my rare disease journey
As May ends, I, like many Americans, will pause on Memorial Day to remember and honor our sisters and brothers who gave, as Abraham Lincoln put it, “the last full measure of devotion” in service to our country.
In my family, Memorial Day has always been special. Each year we pause to honor our deceased loved ones. We lay flowers on their graves and remember the ways they affected our lives.
In my younger days, the names on our family headstones were unfamiliar. As years pass, I recognize more of them. My parents, grandparents, and many others with whom I once shared daily life are no longer with us. This can make Memorial Day a sad event.
In 2020, researchers at Oregon State University published a study in Health Psychology about mental health and rare disease. As a university news story noted, “People with a statistically rare disease are at greater risk of depression and anxiety than people with more common diseases, even if symptoms are similar.”
Like many others with myasthenia gravis (MG), I’ve had my battles with depression. As Memorial Day approached, I decided I wouldn’t dwell on loss. This year, I wanted to find something positive, something I could celebrate.
As I reflected, lines from Ecclesiastes kept coming to me: “To every thing there is a season, and a time to every purpose under the heaven … A time to weep, and a time to laugh; a time to mourn, and a time to dance.” Rare disease diagnoses bring sadness to patients, families, and caregivers. How then can we return laughter and dancing to our lives?
I take inspiration from the verse “What has been will be again.” My life with MG will never return to the way it was before diagnosis. New ways to laugh and dance have replaced those I knew so well. Those who share this journey with me help drive out the darkness. This Memorial Day, in a special way, I’ll honor the living.
Honoring those who help me navigate MG
First among those I honor are my family. In my darkest, most desperate moments, when I see only what MG has taken, they redirect my attention. They point out that which remains and how this can be changed into new adventures. When I’m down, they pull me up.
Writing at the height of the COVID-19 pandemic, Multiple Sclerosis News Today columnist Jessie Ace nailed it. “Fun and laughter are what’s keeping us all going right now. It’s funny that when things get taken away from us we appreciate them even more, and nights like this, when we’re all virtually together, make it all seem bearable.”
Then there are my incredible friends. When I’m too tired to get out of bed, they do my shopping, cook my food, and help me perform the daily functions MG can make so difficult. When they bring Sunday dinner and we play cutthroat spades, it’s as if by some miracle my disease and its struggles are gone.
Our community of friends can expand to include others who live with a rare disease. We can befriend people we never would’ve met if a rare disease hadn’t become a part of our lives.
I can’t forget to honor the medical professionals who tend my body so that I might find laughter and dancing once more. My neurologist is caring and brilliant. The nurses and support staff who ministered to me during my five hospitalizations were kind, patient, and awe-inspiring.
I know that others in the MG community also find strength and inspiration in their extended communities. Former MG News columnist Megan Hunter wrote about her time at a rare disease conference. “Today, I want to show my appreciation for my caregivers, from my mum and family to my husband, to my work colleagues, and to my doctors who haven’t given up on me. I love and admire each of you so much!”
Ecclesiastes tells us, regarding the days left to us, “that there is no good in them, but for a man to rejoice, and to do good in his life” (KJV).
This Memorial Day, I’ll honor the men and women who made sacrifices for my freedom. I’ll honor my deceased family members who paved a way for me. Most important, I’ll honor those who share my MG journey with me. I’ll take comfort knowing that the laughter and dancing that once filled my life before my MG diagnosis will return. Thank you to all who share in my journey.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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