The Community Told MG to Listen Up

Dear Myasthenia Gravis,

What do I want to say to you? It feels ironic to call you “dear” in the salutation. I have learned a lot from you, though; adversity is a good teacher. I’ve learned to ask strangers for help—help getting items down from an upper shelf in the store, help carrying a heavy package into the house and help sorting and folding laundry.

But the biggest thing I’ve learned is this: I can and will outmatch you. I can be sick and still be happy. I can be disabled and have a fulfilling life. I can find meaningful ways to act and create and connect even if I have to do it from my bed some days.

I will persevere, because that’s who I am. I’ve learned that at my core, I am resilient and capable, compassionate and generous, creative and determined, and maybe even a little ornery. But I’m not giving you the credit for that. I was all those things before you entered my life, myasthenia gravis. All you’ve done is made that more obvious to me and everyone around me.

So while I will never call you “dear,” and never be glad you are part of my life, I have made my peace with you being here. But you are not welcome.

Yours in sincerity,

Zach

Dear Miss Girl,

You are a hater! Always competing with me for the spotlight. When I make plans, you often come in and change them.

I’m grateful for all the relationships I’ve formed, but I would have loved to do that without you here, trying to control my life. I’m trying to stay booked and busy and catch flights, not feelings—but you want me slow and sleepy.

Girl, bye!

Alicia

I was diagnosed in 2007 after developing double vision. Remember that MG is a disease with many symptoms and changes. Don’t fear it. Learn from it and be prepared to adjust to it. It won’t adjust to your expectations, but we adjust to it, and we prevail.

Thomas

Dear Lady Myasthenia,

“What have you done to me?” is what I used to think.

Now it’s more, “What have you done for me?”

You took away my love to dance, act and sing—that’s what you’ve done to me. But what you’ve done for me is teach me to be loved unconditionally and that I am more than my traumas, skills and talents.

You’ve taught me self-love, self-patience, resilience and strength.

Nicola

Now that we’ve known each other a while, I want to say that in the beginning, you brought a lot of uncertainty into my life. I was really uncertain about what MG was. No one seemed to recognize the symptoms, and information was not easy to find. I was unsure about what my future would hold. Could I still hold a job? Could I still support my family? Would I ever be able to do things that I love, like play tennis? Today, I have come to the place where I will not let you define me and my life. I have and am continually in the process of taking back my life. That means that I am researching (with the help of my wife) and I am learning to be an advocate for myself. I am making educated choices about medication and healthcare. Life is not perfect, but with my modifications, I am living my life to the fullest.

John

I know we just met, but I already feel like you came into my life uninvited, and ever since, you’ve made your presence known. You challenged my body, my spirit, my daily routine, forcing me to reevaluate things I once took for granted: walking without worry, speaking without slurring, breathing without effort, smiling without fatigue.

You’ve introduced me to a new vocabulary: antibodies, flares and fatigue. You’ve taught me what it means to live in uncertainty, to wake up wondering if today my muscles will cooperate or betray me. But let me tell you something. You do not define me. Yes, you’ve slowed me down, but you’ve also made me stronger in ways I’d have never imagined. You’ve shown me the power of patience, the depth of resilience and the courage it takes to face each day with grace, even when my body says no. You’ve brought fear but also perspective. You’ve taken moments, but taught me to treasure others. You’ve closed some doors, but I’ve learned to find new ones, new ways to laugh, love, connect and live meaningfully. You are part of my story, but you are not the author. I am.

So while I cannot say I’m grateful for you, I can say I’m proud of how I’m choosing to live despite you. I may carry you with me, but you do not carry me.

Sincerely,
Someone Stronger Than You

Regina

Hey MG—why did you pick me? 

I love how you have forced me to live authentically. You have allowed me to truly test the strength and resilience of my body. I have adored these moments, and they have truly made me smile. But you have also created a few barriers. 

I often wonder what my life and romantic relationships would have looked like without you. Would I still be in the city? Would I still be living with my mother? 

And what is going on with my right eye? Why do I continue to have double vision, even on the days when I have minimal symptoms?

Courtney

You were a little hard on me, MG. I didn’t really get to enjoy my younger years. I had so many goals I wanted to achieve—you stopped a lot of that. Traveling and going on adventures was out of the question. Sometimes I felt like finding love was out of the picture as well, because some days you would pop up and show out.

But I can say I gained wonderful friends who were understanding and very helpful through college and everyday life. And as I continue to go down this journey with you, it’s not as hard anymore. You have lightened up on being so mean to my body and life. And I hope we can continue to be at this level and work on getting better over time.

Angel

You have put up a good fight, but I am stronger. You would try to slow me down, but I will not back down. Because of you, I am only a stronger person now, and I will not give up the fight.

Steve

Dear MG,

You brought me to my knees, took me down to the darkest pit that I thought I would never get out of. You made me realize how “normalcy” in life is so precious! What would I thank you for?

I realized I could not do it on my own. I became a stronger, bolder person who was an advocate for my loved one. I will have to say, at first I didn’t like some of the ways I had to be strong when my partner was weak—the switched roles, sometimes I had to force myself. As a caretaker, I really needed a support system also. I do thank you for spurring my creative juices and my research skills that I had to have to do my best for him.

I do thank you for the new support system we have acquired as a result of you, the many friends and the appreciation for the good times in life.

Mary

“I have given almost everything I am. What more do you want from me?”

This used to be how I felt (pity and self-loathing) until I came to the realization that I was making a conscious decision to choose to allow MG to drain me and strip me of everything I am. I have taken ME back! I say, “No more!” I choose peace. I choose calm. I choose serenity. I choose love. I choose me above all! I may not be on the same life path or the person I wanted to be, but I have become stronger, more compassionate, more accepting and more understanding. You have helped me find gratitude, and I love the person I was not expecting to become. MG, I found me!

Bryan

Now that we’ve known each other a while, I want to say, “You don’t define ME.” I am stronger. I am loved. I am a warrior. I am loved by many.

Gilda

Dear MG,

I know we just met, but I already feel like you’ve been following me in the shadows for years, quietly stealing pieces of me before I even knew your name.

You’ve taken so much from me. My energy. My independence. My confidence. My smile on days when I feel like I’m drowning in a body that doesn’t listen to me anymore. My life has been robbed at such a young age, and I can’t help but ask, “Why me? Why now? Will I ever wake up and feel normal again?” There are moments when I grieve who I was. The version of me that didn’t have to second-guess every step, every breath, every plan. I can’t remember the last time I felt “normal,” but I remember what it felt like to dream freely, to laugh without pain, to trust my body.

But despite everything you’ve taken, you didn’t win. Because I’m still here. Still fighting. Still learning how to live alongside you without letting you define me. I speak louder now, not just for myself, but for every person who is still searching for answers, for every misdiagnosed story, for every invisible warrior who is tired of being dismissed. I didn’t choose you, MG. But I choose to rise anyway.

Sincerely,
A fighter you didn’t expect

Victoria

Dear MG, Listen Up!

How have you impacted my life? Guess what? You’ve impacted me in ways I never even imagined. I was diagnosed in 2017. With treatment and support, my symptoms are now minimal. I consider myself so fortunate, MG, so grateful, that I felt I must take on some responsibility to others in my community. So, I’ve become an MG support group leader. We have Zoom meetings, share our stories with one another; sometimes we have a guest presentation. I am in contact with my group members, always available to listen to their concerns, their challenges, and to provide some solace and information that may help them. I also volunteer for my MG organization’s annual walk and fundraiser. I’ve never done anything like this in my life, MG. It’s all because of your impact on me.

Sincerely,

Victor

You have me feeling defeated! I just got back from vacation with my husband, three adult kids and their spouses and my five grandbabies. I had to watch them go on various adventures without me because you wouldn’t allow me to join.

Lisa

Hi, MG. 

You really scared me! 

Truly, I had no idea what was going on when you moved in, and your demanding, needy, “it’s all about me” attitude took some time to get used to. You demanded we learn to communicate, to shop, to live in a new way. I don’t like being out of control, and you seriously took the wheel. 

You taught me a lot. I’ve learned a great deal about my control issues. I’ve learned what it means to allow others to help me. I’ve learned that we are forever roommates, and that we must get along and sit nicely at the table together. 

So, thank you. Thank you for helping me relax into another way of living.

Rachel

Many know you as a thief. Many don’t know you at all. You came and stole more from me than I was willing to admit. However, I keep pressing on! You may steal my energy, you may steal my mobility, you may steal my speech, vision and maybe even some friendships. But know this, I will press on. I will keep raising awareness. I will keep being the best nurse I can be! I will keep educating new MG warriors. I will keep showing others that while I may not always be able to do everything I used to do, I will still press on.

Because of MG, I have learned to say no. I have learned to rest when my body says, “Slow down lady!” I have met some amazing MG warriors who had never met anyone with MG. I have walked with a precious friend of mine and her family as they were told her dad had MG. MG, you may be an uphill battle, just know that I am a warrior!!!

Alicia

You took things I didn’t even know I loved. You showed up quietly, like a whisper I didn’t want to hear and then you stayed taunting me. Through birthdays where I couldn’t lift my arms to hug my kids. Through mornings when brushing my teeth felt like lifting bricks. Through nights I stared at the ceiling, wondering how long I could pretend I was OK. I’ve watched parts of myself fade... not just muscles, but the man I thought I was. The strong one. The dependable one. But you didn’t break me. I’ve cried behind closed doors, but I’ve also laughed in defiance. I miss the old me. But I’ve found strength in the one who remains.

So if you’re listening, MG, really listening, I want you to know this: I’m still here. Tired, maybe. But not done.

Mark