Woman, 29, says she’s happier than ever after losing the ability to WALK and describes wheelchair as ‘ticket to freedom’
Monica Thomas, 29, was diagnosed with Charcot-Marie-Tooth (CMT) disease - an inherited condition - when she was just two
THIS woman says she's happier and more confident than ever - after losing the ability to walk.
Monica Thomas, 29, was diagnosed with Charcot-Marie-Tooth (CMT) disease - an inherited condition - when she was just two.
CMT causes muscle weakness, highly arched or very flat feet and an awkward gait - and gets progressively worse as you age.
By the time she was 19 Monica, from Indiana, USA, was confined to a wheelchair - but describes it as her "ticket to freedom" after years of using leg braces.
The blogger explained: "While some people may see wheelchairs as a kind of prison, to me my wheelchair is my freedom - I'm so much more mobile now.
"I'm not as scared of going to new places and I don't have to spend time anxiously mapping out routes or worrying about having a place to sit down - I literally always have a place to sit.
"I ended up becoming a happier person, more sure of myself, more confident. I've gained a real love for my body - genetic mutations and all."
Although Monica's condition has plateaued now, she initially deteriorated much faster than family members with the same condition.
She said: "I was only five when I got my first pair of leg braces - three years after my diagnosis.
"By comparison, my dad was diagnosed at five but didn't need mobility aid until he turned 50.
"While my condition seemed normal growing up with family members that had CMT, it became clear that my disease was progressing more quickly than theirs by the time I started nursery."
What is CMT disease?
CMT disease is a group of inherited conditions which slowly damage the peripheral nerves.
Peripheral nerves are found outside the main nervous system (brain and spinal cord) and are responsible for controlling the muscles and relaying sensoral information, like the sense of touch, from the limbs to the brain.
People with CMT often experience:
- Muscle weakness in their feet, ankles, legs and hands
- An awkward gait
- Highly arched or very flat feet
- Numbness in the feet, arms and hands
Symptoms normally start to appear between the ages of five and 15, but sometimes don't develop until well into middle age.
It is a progressive condition, meaning symptoms continue to get worse, and there's no known cure.
It is not life threatening and most people with the condition have a normal life expectancy.
As Monica got older, she started to notice the difference between herself and the other children at school.
She said: "It was a lot harder - I stood out as someone who was different or 'other'. I was sad a lot of the time, angry sometimes.
"I mostly just felt that terrible feeling of unfairness that we all seem to feel as kids - but instead of seething over not getting the toy I wanted, I just wanted to be able to run around."
But she quickly had to adjust to her ever-changing abilities.
Monica said: "Just when you've started to accept part of your body failing, CMT isn't far behind, ready to take another one.
"I've gone from walking with leg braces to needing a walker to being a full-time wheelchair user in the span of a decade.
"It takes time and energy to accept each of those things, because each time there's a change it feels like an upheaval of your life."
Now Monica recognises her wheelchair has made her more confident than ever and she was even wheeled down the aisle by her parents when she married husband Alec in 2015.
She is sharing her story to educate others on what it's really like to be disabled - and show them she doesn't need pity.
She said: "When I first joined Instagram, I just posted selfies or pictures of my dog - but never pictures where my chair was visible.
"Then I started following accounts of other disabled women and it was like the gates had opened to the world where I belonged.
"Because of the lack of representation of disabled people in the media, I had never really seen women who looked like me, living lives that were full and adventurous and sexy.
"Seeing the stories and photos those women were sharing helped boost my confidence so much that I wanted to share mine too.
"Each disabled person's story is completely different because we are different people.
"That should be obvious, but because we're always portrayed as tragic or inspirational, people have a misguided, limited view of disabled people.
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"That's what I want to work to change through the stories I write about my life."
Monica is "reclaiming the disabled narrative" .
Earlier this week, we revealed how a mum lost ALL her hair after having a baby and it never grew back – now people think she has cancer.