Lighting the Way to a Cure

  • Financials
  • Patient Library
  • Blog
  • Calendar
FSHD Header Logo
mobile-logo

  • Who We Are
        • About Us
          • History
          • Mission
          • Our Team
          • Financials
        • Our Impact
          • Therapeutic Accelerator
          • Education
          • Advocacy
          • Our Partners
        • Journey To A Cure
          • 2022 Donor Impact Report
  • Understanding FSHD
        • What is FSHD
          • Symptoms
          • Diagnosis
          • Early-onset FSHD
          • Genetic Testing
        • Living with FSHD
          • Newly Diagnosed?
          • Finding Care
          • Symptom Management
          • Patient Library
        • FSHD University
          • Physical Health
          • Wellness
          • Research
  • Get Involved
        • Support Us
          • Ways to Give
          • Become a Torchbearer
          • Raise Awareness
          • Volunteer
          • Fundraise
        • Advance Research
          • What is a Clinical Trial?
          • Your Involvement Matters
          • Current Trials & Studies
        • Connect
          • Find Your Local Chapter
          • Join the Community
          • World FSHD Alliance
          • Online Communities
        • Events
          • Walk & Roll to Cure FSHD
          • Events Calendar
          • FSHD 360 Regional Conferences
          • World FSHD Day
  • Research
        • For Patients & Families
          • Advance Research
          • True Cost of FSHD Study
          • TestFSHD genetic testing
          • Current Trials and Studies
        • For Researchers
          • Apply for a Grant
          • Research We Have Funded
          • Resources
          • Int’l Research Congress
        • For Clinicians
          • FSHD Masterclass
          • ICD-10
        • For Industry
          • Therapeutic Accelerator
          • Clinical Trial Research Network
          • Drug Development Pipeline
          • Voice of the Patient Report
          • Project Mercury
  • News
    • Media Library
    • Blog
      • Living with FSHD
        • Health and Medicine
        • PT and Exercise
        • Tips and Tricks
        • Mental Health
      • FSHD Society News
      • FSHD Research
      • Fundraising & Events
      • Media & PR
    • FSHD Society Radio
    • The FSHD Advocate
  • Search
  • Financials
  • Patient Library
  • Blog
  • Calendar
  • JOIN US
  • Donate
  • JOIN US
  • Donate

Playing the hand you’ve been dealt

Home / Living with FSHD / Playing the hand you’ve been dealt

Posted on: Feb 20, 2019

By Landon Poindexter

One thing I have come to learn in my eighteen-year life is that no matter how hard you try, there is no avoiding hardships that are sent your way. How you deal with these hardships will define who you are. When obstacles come your way, you have two choices: play the cards you’ve been dealt, or fold. Whether or not you choose to fold, life goes on.

The most difficult hardship I have had to deal with in my life is the disability of my mother. My mom has suffered from FSH muscular dystrophy for almost three decades, and since I was five years old, has not been able to walk.

As a child I hated the fact that my mom couldn’t walk and needed to be cared for. It seemed unfair to me that all my other friends’ parents were healthy and, as I used to say, “full of life”. I didn’t understand why I, a child younger than ten, had to be responsible for taking care of my own mother. I’m ashamed to say that I was embarrassed of my mom. I felt as if having a disabled mom was what defined me.

Through the years, I more and more developed a feeling of disdain toward my own mother because of her disability. I didn’t care that it wasn’t her fault or that she couldn’t do anything about it. I only thought of myself and how her condition affected me. I wanted a mom that was energetic and indestructible, not a mom who was always tired and in pain. I wanted to be able to go play with my friends but I couldn’t a lot of the time because she was feeling too ill to drive me.

To me, it was her fault that this happened and consequently, this led to my taking my anger out on her. I spoke foully to my own mother and made her feel as if her condition was the problem in my life. As I got older and older, my mother’s condition grew worse and so did my anger.

To this day, I regret how I treated my sweet, sweet mother who only wanted the best for me. Even through her physical and emotional pain derived from both her disability and my wrongful acts, she has remained resilient. Through all of it she showed love for me and never made me feel as if I was wrong.

This went on for years until one day, everything changed.

I was in middle school when the breaking point for me came around. I had had a bad day and came home to my mom who was in intense pain. I can’t even remember what I said but for the first time, I brought my own mother to tears. She said, “I know I am not the mother you want me to be, but I didn’t choose the cards I was dealt.”

Landon and his mom, Melissa
Landon and his mom, Melissa

At that moment I confirmed that my mom was different than anyone else’s. The thing is, this was the same moment I realized that she was the best mom out of anyone I knew. Even though she was dealt a weak hand, she never thought of folding.

My mother is the strongest person I know. Even throughout her hardships, she has given me everything that she possibly can. I believe that I am a strong, resilient man, and I have her to thank for it. She taught me the most important lesson of all which is, no matter what cards are dealt to you in life, to always go all in.

Share

Filed Under: Living with FSHD

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

SEARCH

Categories

  • FSHD Research
  • FSHD Society News
    • Extraordinary Measures
    • Journey to a Cure
  • Fundraising & Events
  • General
  • Living with FSHD
    • Health and Medicine
    • Mental Health
    • PT and Exercise
    • Tips and Tricks
  • Media & PR

Sign up for Email Alerts

Stay up to date with the latest FSHD news and updates from FSHD Society.

CONNECT WITH US

Proud Member World FSHD Alliance (1)
Footer-Logo-min

General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

FSHD Society
P.O. Box 411617
Boston, MA 02241-1617

(781) 301-6060

  • DONATE
  • Donate
  • Join Us
  • Inclusivity & Equity
  • Privacy Policy
  • Contact Us
  • Glossary Of Scientific Terms
Digital Marketing by