I hear parents say it often: “I felt helpless.”
Sometimes I’ll hear these words during an interview on the podcast I co-host, “Two Disabled Dudes,” while other times I’ll read them in blogs, on social media, or in other columns like mine.
I’m not a parent, and I’m sure whatever helplessness I feel may not equate to someone talking about their own bloodline. However, most of us feel helplessness at some point in our lives, and it cannot and should not be compared to another person’s situation.
My brother recently faced a tragic accident that left him paralyzed from the waist down, a spinal cord injury that has rendered him almost completely dependent on others, at least for now. I imagine that the dramatic and instant changes in his life have a different impact than the progressive nature of the rare disease I live with, Friedreich’s ataxia.
Nonetheless, life is different, and a path forward must be found or paved.
I’ve become acquainted with people from all walks of life over the years, especially relating to rare disease and disability. Although I hate that any one of us faces the daily challenges of disease and disability, I’m absolutely grateful that so many people have chosen to face their challenges openly. Brave and courageous warriors have so graciously and emphatically allowed their own journeys to help inform and inspire generations to come.
It’s my own experience in the world of disability that gives me hope right now for my brother. I can’t imagine the heaviness of emotional and psychological pain that comes with instant, life-changing events. I’m sure the internal war that is waged against a person facing such a prognosis leaves devastation in its wake.
Not only do we have to adapt in multiple areas of life, but we also have to wrestle with the expectations and ambitions we hold for ourselves. We have to find ways to come to terms with ourselves, inside and out.
I don’t know much about spinal cord injuries, but I’m grateful that our world has become more open to the different abilities that exist across our globe. I am thankful that although it’s a community nobody asks to join, those facing the hardships of spinal cord injuries have paved a way for newcomers.
I am especially grateful for those who have offered advice, perspective, and support. I often say, and wholeheartedly believe, that there is always a reason to get out of bed. In other words, life can be extremely hard at times, but as long as I am breathing and my heart is beating, I believe there is a purpose for my continued existence. I hold this to be true for every person.
In times like these, my belief doesn’t waver, but it certainly has to search more intently and deeply to define the reasons to get out of bed. Excuses tend to run rampant, but reasons are there, too, and it’s the experience and help of others that often help me find them.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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