Connect with others who understand.

sign up log in
About mySMAteam

My Perspective: A Letter to a Thief

Posted on July 23, 2021
Article written by
Lisa Velez-Batista

You were always there, hiding in the shadows like a criminal. For a long time, you were undetected as you caused havoc. I felt your presence before you were identified. Some doubted your existence, blaming me for your crimes.

You are a thief and a villain, robbing the strength of the innocent and chipping away at the self-esteem of your victims. Your wrath is unyielding as you have no compassion for your prey. You have struck me down more times than I can count. Through the years, I have overcome broken bones, abrasions, and bruises while mending my self-worth.

You scared me into rushing through life in the hopes that I could outrun your destruction, which drove me to set goals and accomplish them in spite of you. In your attempts to bring me down, you have built up my resilience. I cannot deny that many tears were shed because of you — but the tears only angered me and made me fight harder. I learned to focus on the rising instead of the falling, on my strength rather than my weakness.

You are the enemy that resides inside of me. You and I are in a civil war, both fighting for ownership of the land that is my body. At times, though, one must embrace one’s foe because they have lessons to impart. They teach you about your humanity. They show you who you really are. You have shown me where to find my strength. It is not in my body but in my mind. Although I wish that you had not invaded me, I have accepted your existence and hope to live alongside you in harmony. I do this for my own peace of mind. If the day of your exile ever comes, I will celebrate. Until then, I will not let you destroy my sense of worth.

Your name is spinal muscular atrophy, SMA. Your acronym reminds me that I must be Strong Minded Always. I must fight when you try to repress me and remind myself that I am not measured by your destruction but by the will that I have to go on in spite of you.

My Perspective articles discuss SMA from a specific point of view. We understand that everyone with SMA or caring for someone with the condition has a different experience. We aim to share as many of those viewpoints as we can. We’d love to hear from you. Please submit your proposal for editorial consideration to editors@myhealthteams.com. My Perspective articles don’t reflect the opinions of MyHealthTeams staff, medical experts, partners, advertisers, or sponsors.

All updates must be accompanied by text or a picture.
Lisa Velez-Batista is a member and ambassador on mySMAteam. Learn more about her here.

Related articles

Historically, spinal muscular atrophy (SMA) has been difficult to diagnose. The doctors I saw as...

Learning Self-Advocacy at a Young Age: My Experiences

Historically, spinal muscular atrophy (SMA) has been difficult to diagnose. The doctors I saw as...
People in online gaming communities have a wide range of personalities, outlooks, and behaviors —...

Gaming With SMA: Beware of Trolls and Hackers

People in online gaming communities have a wide range of personalities, outlooks, and behaviors —...
Becoming a better gamer can enhance your enjoyment and expand your gaming opportunities. Getting...

Gaming With SMA: Leveling Up Your Gaming Skills

Becoming a better gamer can enhance your enjoyment and expand your gaming opportunities. Getting...
When you first get started with online gaming, finding friends can feel virtually impossible...

Gaming With SMA: Finding Friends in Online Gaming

When you first get started with online gaming, finding friends can feel virtually impossible...
If you’re just starting out as a gamer, you’re in for endless hours of fun. In the modern era of...

Gaming With SMA: Choosing Your First Game

If you’re just starting out as a gamer, you’re in for endless hours of fun. In the modern era of...
The ability to walk is a function most people take for granted. As a young child, I often...

My Perspective: Anti-Gravity Treadmill

The ability to walk is a function most people take for granted. As a young child, I often...

Recent articles

Are you an expecting parent who has a family history of spinal muscular atrophy (SMA) or a family...

What To Know About SMA Prenatal Testing and Diagnosis

Are you an expecting parent who has a family history of spinal muscular atrophy (SMA) or a family...
Spinal muscular atrophy (SMA) is an inherited disease caused by a mutation in the genetic...

The Role of SMN1 and SMN2 Genes in Spinal Muscular Atrophy

Spinal muscular atrophy (SMA) is an inherited disease caused by a mutation in the genetic...
Medical treatments have dramatically changed the prognosis (outlook) for people living with...

Spinal Muscular Atrophy Life Expectancy: What’s Known and What’s Unknown?

Medical treatments have dramatically changed the prognosis (outlook) for people living with...
Spinal muscular atrophy (SMA) and Tay-Sachs disease are neurodegenerative, autosomal recessive...

Tay-Sachs vs. Spinal Muscular Atrophy: Comparing Late-Onset Forms

Spinal muscular atrophy (SMA) and Tay-Sachs disease are neurodegenerative, autosomal recessive...
Spinal muscular atrophy (SMA) is a rare genetic condition that causes a decline in muscle...

Living With Adult Onset SMA: Diagnosis, Treatment, and Outlook

Spinal muscular atrophy (SMA) is a rare genetic condition that causes a decline in muscle...
Neuromuscular disorders such as spinal muscular atrophy (SMA) and myotubular myopathy (MTM) can...

The Difference Between SMA and Myotubular Myopathy

Neuromuscular disorders such as spinal muscular atrophy (SMA) and myotubular myopathy (MTM) can...
mySMAteam My spinal muscular atrophy Team

Thank you for subscribing!

Become a member to get even more:

sign up for free

close