The birthday blues trap me between acceptance and frustration

I bounce from contentment to longing for the person I once was

Shawna Barnes avatar

by Shawna Barnes |

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This week, I turn 41. Some days, I’ll catch my reflection in the mirror and feel a deep sense of pride in the person looking back at me. I’ll see the strength I’ve built, the lessons I’ve learned, and the resilience that has carried me through these 41 years.

Then there are the days when I avoid the mirror altogether. On those days, the aches in my body seem louder than my inner voice, betraying the green-eyed, curly-haired face staring back at me. Right now, I feel like I’m straddling the fence between these two extremes, caught between acceptance and frustration, between gratitude and longing.

Some days, I feel an overwhelming sense of contentment with the life I’m building alongside my family. It’s a life full of purpose and love, grounded in the choices I’ve made and the lessons I’ve learned along the way. Yet even in those moments of peace, I can’t help but feel the tug of wanting more. It’s not a greedy more, but rather a quiet yearning for the parts of my life that have slipped away — some because of time, others because of myasthenia gravis (MG).

Living with MG has shaped my life in ways I never could’ve anticipated. I’ve tried to use it as a foundational pillar to build something meaningful, although the irony isn’t lost on me. How do you build anything solid on a condition that’s so dynamic and unstable? Yet MG has become a part of who I am, a strange source of strength that’s taught me how to adapt, persevere, and find beauty in the unpredictable.

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My choice is to be

I also have days when I long for the life I had before I got sick in 2010. Sometimes I miss the person I was before I enlisted in the Army in 2007. Back then, I could throw myself into my work without hesitation. I could pour everything into those grueling 18-hour days because I genuinely loved what I was doing. I miss being a medic. I miss that energy and the sense of invincibility that came with a body I could rely on.

A close-up of a woman looking at the camera on her computer. She looks over a pair of glasses resting on the ridge of her nose and has her head tilted to the right.

Columnist Shawna Barnes turns 41 this week. (Photo by Shawna Barnes)

But as my birthday approaches, I find myself yearning for something simpler: the ability to just be.

For this week, my 41st trip around the sun, I want to focus on being present. I want to be mindful of the fact that, while broken in some ways, this body has carried me through my worst days. I want to honor that, even when it feels hard. I want to show myself grace, knowing that as I push my physical boundaries, I’ll inevitably stumble — but that’s part of growth. I want to lean into the small moments with my husband, those fleeting, everyday moments that make the best memories.

Looking back, I can see now that MG gave me a gift before I even knew what I was fighting. It forced me to stop taking the little things for granted, things I never thought twice about before: walking without assistance, breathing without struggling, laughing and crying without shortness of breath. These once insignificant acts have become reminders of what it means to really live.

Over the years, I’ve talked a lot about the unexpected gifts MG has given me. But birthdays have a way of forcing me to reflect on them more deeply. Maybe it’s because of that inevitable question people always ask: What do you want this year?

What I want isn’t something you can buy or wrap with a bow. I want the ability to keep learning and growing. To keep finding joy in the small things. To keep being — being present, being grateful, and being me.


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.

Liz Lawrence avatar

Liz Lawrence

Happy birthday 🎈. Thank you for the gift you give us MG-ers every day with your shared stories and experiences that keep our hope alive.

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Janeta avatar

Janeta

Shawna, how very inspiring is your journey, thank you! Happy Birthday fellow Aquarian and many blessings your way. 🙏🏼❤️🇺🇸🇦🇺

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Winston Roden avatar

Winston Roden

Shawna,
I was diagnosed in February 2019. My family and the doctors have thought my life was over a couple of times, but it was not from a MG crisis. Not too long after the diagnosis I had a UTI and a ER doctor gave me Levoflaxin, even though I had told him repeatedly that I had MG and that there are several antibiotics that i ABOSLUTELY CANNOT TAKE.
I came close to a MG crisis while at home alone, (I am now 81, widowed, and live alone) while laying on the sofa. I was lying on my back and suddenly I could not get my breath. For some reason i rolled sideways, landing on the floor, and I could breath. My neurologist said the epiglottis had fallen back into my throat from the weakness and blocked me air and when I rolled sideways to moved the epiglottis enough that I would breath.
My eye muscles became so weak that I had to force my eye to open and the doctors decided I needed a double eyelift. The outpatient procedure was done with no problem and I felt fine. Shortly after a two and a half hour drive home One of the arteries above my left eye broke open and started bleeding with force through the end of the incision. We called 911 and met the ambulance, under the circumstances I would probably have died as I live in the country 30 minutes from the ambulance station and the 20-25 minutes back to the hospital. The paramedic said they lost me on the way to the hospital. I had tried to tell him that I was going out as everything went dark. He gave me a life-saving shot, started an VI for fluids, held pressure on the right place to stop the first bleeding. After calling the doctor who did the procedure they proceeding to start sewing until they stopped the external bleeing although the blood came through my eye, and spread across much of my face. I lived.
I have been on steroids since early diagnosis and the doctor warned me about side effects. I have two thoracic vertebrae and two lumbar vertebrae that are fractured. One of the lumbar vertebrae also has stenosis.
My neurologist had me on microencephlate, 500 mg four times daily and my WBC dropped to 3.4 And RBC was 3.25. I have been prediabetic much to the time with steroids in my regimen.
I cooked two pies this past Sunday morning for pot luck lunch and failed to turn the exhaust fan on and since it was in the 30's outside surely I would have been good. But the temperature in the kitchen went to 78 before I realized it and I nearly collapsed. I finally started recovering a little around 10:00 in the evening and felt very fortunate.
All of this is to say, your writings mean so much to me. I wish we could reach through the internet and swap heartfelt hugs. Thank You so much. And as I say, I am Blessed Beyond Belief. May it be true for you also.

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