Myasthenia, Myasthenia Gravis, MG, Chronic illness, caregiving, caregiver, lizeth, caregiver story, MG patient
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This Isn’t My Story, But It Is My Life: My Father Has MG

This Isn’t My Story, But It Is My Life: My Father Has MG

By Lizeth V.

This isn't my story, but it is my life. Like many others who navigate life alongside family members who suffer, I suffered, too.


When I was four years old, my father found out he had myasthenia gravis. At the time, I did not know what that illness meant or what it was.


I was five years old when he was rushed to the hospital. He had gone into a myasthenic crisis, which happens when your muscles get too weak to help you breathe. His heart stopped for about four minutes. Within a few minutes, his heart started again.


A miracle, many say, but I didn't know about this miracle until I was 10 because the second I saw my father in that ambulance, I ran away.


I was five years old, and I didn't understand what was going on. All I knew was that I was scared. I ran to my cousin's house and there I closed my eyes and slept, wanting to hide until this nightmare was over. Only it wasn't a nightmare; it was my dad’s life and mine.


During the next three months my father would be in a hospital bed, and I don’t remember much from that year. All I remember is that when he finally got out, he was skinny and couldn't talk.


Depression, many people believe, doesn’t show up until later in life, but I was five years old, and I couldn’t feel any emotions. I was just there, seeing my life in the third person, and that went on for years. I was so young, and at that age, children are supposed to be having fun, but instead I was in a room praying to God for a miracle.


It took five years before I found out what happened that day the ambulance came and I ran away. My father explained to me that his heart had stopped for four minutes but he had been resuscitated, and in that moment my sadness turned into gratefulness. My father explained to me how, when he had died, he saw in his head a man in a beautiful garden, with trees and grass, telling him to breathe in and out. And like that he was living again.


His story was a turning point for me. I saw the miracle of his life, and I knew I had to change my attitude toward this world. I had to enjoy and make the best of what I had. While I did not have a healthy father, I had him, and he was going to get better – I knew he was going to get better! And he did.


Now I try to be the best I can, in everything that I do for me and for him. He may have lost his voice, but he still has my voice, and I will use that voice to make a difference. I advocate for people with myasthenia gravis, as well as for health care reform, so that all Americans can access care.


I am not five years old anymore, and I've learned to love my life even though I have challenges. Experiencing childhood alongside a parent who is ill has taught me that life is too short to dwell on everything I don't have. I will laugh and sing and enjoy my life with my family because not everyone is given a second chance in this world.


Lizeth is a high school student in Southern California.

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