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How I Stay Upbeat Living With an Unpredictable, Progressive Disease

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I was diagnosed with Charcot-Marie-Tooth disease when I was 5. It is a progressive neurological condition that destroys the neural pathway from the brain to the muscles, causing atrophy, weakness, pain and numbness as well as lack of balance. It primarily affects the arms and legs but in some cases, it can also affect breathing and swallowing. CMT is a genetic disease that affects 2.8 million people.

When I was diagnosed, it was predicted I’d be in a wheelchair by the time I was 20. I far surpassed that, but things have progressed over the past decade to the point where I’m now falling and breaking bones. It’s gotten to the point where I need to rely on a motorized wheelchair to safely get around.

That’s been a challenging fact to absorb. I’m 46 and should be in the prime of my life, but I struggle to walk across the room. At times I deal with a considerable amount of depression, and it has been difficult to deal with the fact that I’ve been dependent upon others to leave my house for the past six years since I stopped driving. Despite these facts, I’m typically a very positive and upbeat person. I’m constantly asked how I stay so strong and how I cope with these tremendous challenges. Well, the best ways I’ve found to curb my own depression are to focus on helping others, to immerse myself in creative hobbies, and to spend as much time in nature as I possibly can.

Eight years ago I started a Facebook page called Words of Kindness. I was going through a particularly dark time and started reading inspirational stories and quotes just to get through the day. I realized they became my lifeline, and if they had the power to lift my spirits, I needed to share them with the world. The feedback has been overwhelmingly positive and every week people around the globe are reaching out to me, often with inspirational stories of their own, and telling me how much the kind words have helped brighten their day.

I’ve recently taken up painting and have found it to be an incredibly therapeutic hobby. I’ve made it a goal to spend at least a few minutes a day doing something creative, even if it’s just splashing some paint down on a canvas to come back and finish later. I’ve also renewed my love for writing through this awareness campaign and plan to continue on a regular basis.

Two years ago I decided to pursue my passion for nature and gardening and to further my education by becoming a certified permaculture designer. I’m in the midst of designing an eight-acre food forest complete with disability-accessible trails throughout the woods, orchards, gardens and fish ponds. Eventually an off-grid greenhouse and small accessible house will be added. The goal is to eventually have this site open for tours and educational workshops to teach others how to reconnect with nature and grow much of their own food, even in a zone 4 cold climate. Being stuck at home so much, I’ve learned that being more self-sufficient and surrounding myself with nature has got to be a primary goal for my own happiness and well-being.

To be able to continue my work as a permaculture designer, I am in need of a specialized 4-wheel drive motorized wheelchair that has the ability to safely and reliably handle various terrain, slope, sand, snow, grass and gravel. I’ve been looking at the 4-wheel drive Extreme X8 wheelchair as a solution and an accessible vehicle to be able to access job sites, medical appointments and run errands.

Although I feel like I’m running out of time with the progression of my disease, I have faith that the universe wants me to be mobile and living a life I’m passionate about. I’ve learned perseverance is critical, and if I can pull this off, there’s no telling what I’ll be able to accomplish once I can break free from these four walls.

I’ve always felt that things happen for a reason, and there’s no sense going through trials and tribulations unless we learn from them. I’m still learning from this, and I’m excited to see what’s in store for my future. I’m thrilled to be able to bring awareness to Charcot-Marie-Tooth disease and hope one day there is a cure.

Learn more at Words of Kindness.

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Originally published: February 6, 2017
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