Taking stock of my challenges and responses over Memorial Day

With my 'ghosts' taking the holiday off, I know I've arrived at a new place in life

by Shawna Barnes | June 5, 2023

Being a teen mom, Iraq, husband No. 3, myasthenia gravis, moving halfway across the country, getting a new team of specialists, and a 5k.

What do these random things have in common? They’re all hard things I’ve overcome. On the backside of Memorial Day, I find myself reflecting on these life events and more.

Becoming a teen mom

I had Caden when I was 18, in March of my senior year of high school. He was 3 months old when I graduated as class vice president and in the Top 10 of my class.

Beating the stigma of being a teen mom was hard. I had a chip on my shoulder and was out to prove the world wrong. Caden is now a wonderfully caring and compassionate young man finding his way in this world.

AAN 2023: Longer-term benefits seen with under-skin efgartigimod

The Army and my deployment to Iraq

I loved every minute of being a medic in the U.S. Army. Yes, even the deployment to Iraq. I got to help people and make a difference in their lives every day. But I also came back with a myriad of health issues.

Memorial Day is always hard because my “ghosts” — patients and friends I’ve lost — come to visit. This Memorial Day was my first time in 13 years that I slept soundly through the night; no ghosts came to visit. But more on that in a minute.

Husband No. 3

Yes, you read that right. Justin, my partner in crime for the past 12 years and husband for almost 10, is my third husband. I was married and divorced twice by the time I was 26.

Good thing three is my lucky number.

Myasthenia gravis

My journey to obtain a diagnosis of myasthenia gravis is a story full of ups and downs, including doctors who didn’t care, pills prescribed with no desire to determine symptom cause, and lots of boat rocking and squeaking wheels.

But this journey taught me how to advocate for myself in ways that the other hardships didn’t.

Moving halfway across the country

Taking a leap of faith and leaving the only state my husband had ever called home was an adventure I’m glad we chose. It started with anxiety and concerns about establishing a new care team, but it’s ended up being one of our greatest adventures. We’ve met friends who’ve become family and found a community that embodies the small-town values we yearned for.

My care-team concerns were unfounded, it turned out, as I’ve built an amazing team since moving to Wisconsin from Maine. I’m lucky.

A team of specialists

Neurology, rheumatology, dermatology, endocrinology, primary care, counseling, massage therapy, and a nurse’s infusions round out my current care. The part that continues to blow my mind is how well everyone works together to maintain consistency and continuity of care for me. Getting to this point was no easy task.

But it started with sharing my story, learning to advocate for myself, and never giving up.

5K

And finally, I completed a 5K over five days in honor of Memorial Day this year. I mentioned last week my plan to attack it. As well as I planned, though, Mother Nature had her sights set on throwing a few curveballs.

Starting with heat and mosquito swarms, two of the five days saw me hobbling around and walking laps inside my house. A week ago, on Memorial Day, I still had .75 miles to go, and I wasn’t sure I’d be able to complete my goal.

But by breaking it down and walking in three sessions, I completed what I once thought was a pipe dream. I completed a 5K in five days.

Reflections

Each of these events has left a lasting impact on my life. What’s now brought this set of seemingly unrelated events together was the lack of visitors in my dreams, those “ghosts,” this past Memorial Day. I’ve wondered why they didn’t visit, but the only reason I’ve been able to determine is because I’m finally in a place I feel comfortable calling home.

My life now is full of support. I’m supported by my husband and son. I have an amazing care team to support my medical journey. And I have a community that’s already proven its willingness and desire to support me and my family as I strive to live my best possible life.

We all live through some sh*t. But if you take a moment to reflect on what you learned during those trials and changes, my hope is that, like me, you’ll find yourself able to see the good. By holding on to that, your striving toward audacious goals and living a life full of rich reflections are worth every single second of it all.

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.

Print This Article

About the Author

Shawna Barnes Shawna N.M. Barnes is a writer, accessible website designer, and disabled veteran living in Cable, Wisconsin, with her husband. She was diagnosed with seronegative generalized myasthenia gravis (MG) in 2018 after seven years of advocating for herself within the VA’s medical system. She hopes that through her transparency, bluntness, and no-nonsense way of writing about life with her disease that she can help others see that there is hope after an MG diagnosis. Sometimes, we just have to get out of our own way to live our best lives.