My Struggles Do Not Define Me

“My struggles do not define me,” said eighteen-year-old Raimee*.

Those are big words from someone who has faced significant health struggles her entire life.

She went on to say, “I won’t let my struggles stop me; instead, I try to live life to the fullest. I am an overcomer.”

* Her real name is used with permission.

Rare Combination of Scoliosis and Muscular Dystrophy

Three physical disabilities accompanied Raimee’s birth: a missing left hip socket, scoliosis, and a rare type of Muscular Dystrophy (central core disease with nemaline rod myopathy).

Muscular Dystrophy refers to a group of 30 genetic diseases that cause muscle degeneration, progressive weakness and chronic or permanent shortening of tendons and muscles. 

She inherited Muscular Dystophy from her dad. The co-morbidity of Muscular Dystrophy and Scoliosis isn’t rare, but her form is severe.

Her spine began curving as early as Kindergarten, which made a back brace necessary. “Sadly, the teasing got worse when I wore the back brace as kids didn’t understand what was wrong with me,” Raimee remembers.

 

Relearn Basic Skills

Each year, the curve in her spine worsened. By 5th grade, Raimee underwent a corrective surgery where doctors fused her spine from her shoulder blades to her lower back then inserted titanium rods on both sides of her spine.

Because of her weak muscles from her Muscular Dystrophy, her back didn’t heal properly after the surgery, leaving a jagged scar all the way down her back.

After the surgery, she had to relearn basic skills like walking, going to the restroom by herself, and getting out of bed.

Unfair for Me to Struggle So Much

Raimee remembered this being a very dark time in her life. “I began feeling sorry for myself. I asked God, ‘Why me?’ When I thought about everything I had already gone through in my life, I told myself it was unfair for me to struggle so much when other people got to be normal.”

Thankfully, Raimee participated in the Muscular Dystrophy camp each summer where she made friends with others who could relate to her struggles. She connected with them when her struggles seemed overwhelming.

When she returned to school in 6th grade, it was necessary for her to use a wheelchair. “If I fell down while I was still healing, it would have jarred the rods and I would have needed another surgery to repair them.”

With the addition of the wheelchair, her friends treated her as if she was going to break. It seemed they pitied her. That was the furthest thing she wanted them to feel.

No More Feeling Sorry for Yourself

Her mom could tell she was struggling emotionally. It was time for Raimee to talk with a counselor, so her mom arranged it. Counseling helped Raimee work past her frustrations and lean on God when she struggled.

During this time, her mom shared Mandisa’s song ‘Stronger’ with her. Raimee listened to the lyrics and knew her mom was right when she said, “There’s no more feeling sorry for yourself.”

 

As Raimee listened to the lyrics of “Stronger,” she realized God would be with her during her struggles and He would strengthen her.

Taking a Toll on her Body

A move to Tennessee with her mom and step-dad at the beginning of 8th grade started off a little shaky when she fell on the first day of school and had to ask for help.

But, new friends who were understanding and supportive made the rest of that year and high school a memorable time.

Transitioning into college is never a piece of cake, but the scoliosis and Muscular Dystrophy  began taking a toll on Raimee’s body. While trying to excel in her studies, she began experiencing back pain, muscle spasms in her shoulders, and fatigue.

Condition Was Worsening

In March of 2018, Raimee went for her routine yearly check-up following the scoliosis surgery. “I was not expecting the news I received. My doctor said my condition was worsening. He also said that within the next few years, I would be immobile and permanently in a wheelchair.”

He went on to say, “When we did your surgery when you were eleven, we didn’t put in rods the full length of your spine so you could maintain your mobility. As time has gone on, you’ve been putting pressure on your back when you walk. This pressure is rubbing the disks together, causing them to crumble. You have degenerative disk disease.”

Both Raimee and her mom cried when they heard his prognosis: “The discs in your spine are crumbling at a faster rate. You have few years before I will have to fuse the bottom of your spine, causing you to be immobile.”

During her interview, Raimee told me time and again she could not have made it on this journey without her mom. Their relationship shows how important it is to have a supportive person or group journey with us as we fight to overcome our struggles.

I Know I Can Overcome What’s Ahead

This news rocked Raimee off her foundation of strength. But not for long as she knew talking it out in counseling would help reset her mindset.

“With her help, I have been preparing for the time when I will no longer be able to be totally mobile,” she shared.

The prognosis Raimee heard in March would be very difficult for anyone to hear, much less an eighteen-year- old with much life ahead of her.

But listen to the wisdom in her words about overcoming: “There have been times when I thought I would never overcome the obstacles I was facing, and there still are times when I doubt my strength and ability to overcome. But when I start to think I can’t handle what’s next, I look back at everything I’ve already dealt with and I KNOW I can overcome what’s ahead.”

Made Strong through Christ

Since March of last year, Raimee decided to focus on 2 Corinthians 12:9-10. It says, “My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

Her muscles may be weak, but she knows she is made strong through Christ.

These verses reminded Raimee of how Mandisa’s song “Stronger” empowered her to keep fighting years ago. So, it was a dream come true for Raimee and her mom to meet Mandisa recently at a concert in Atlanta.

My Struggles Do Not Define Me

Raimee said, “My struggles do not define me. I won’t let my struggles stop me; instead, I try to live life to the fullest. I am an overcomer.”

She is determined to get up everyday and live. Some days will be harder than others.

What then? She will lean on God and others who understand her struggles. She will remember all the great things that have happened in her life instead of focusing on the challenges.

Leave a reply (below): Some struggles are for a season. Raimee’s will be much longer than a season. But, she is prepared to keep fighting.

When you’ve had seasons filled with struggle, what motivated you to fight to overcome?