Dear Muscular Dystrophy: Where do I begin?

Dear Muscular Dystrophy,

Where to even begin? It has been 24 years since you and I started life together, and every day has created incredible blessings and, at the same time, astonishing heartbreak.

In every sense of the word, we grew up together. However, that isn’t to say that always being with each other 24/7 hasn’t had its trying moments. Throughout my childhood, you were the thing I couldn’t understand. People told me about you and your potential impact on my life, yet I still couldn’t put everything together.

You were and still are the world’s most complex Rubix cube; even the experts couldn’t and still can’t figure you out completely. There are questions upon questions, and rarely are there concrete answers; you are constantly evolving, making people wonder what kind of sub-branch you are. Ullrich’s to one, Bethlem to another. Safe to say there is never a dull moment with you.

As much as the elusive nature of you surprises me, you are the thing that constantly tries to raise the stakes in a way that is like tying someone down to train tracks and asking them to move. It’s simply terrifying, and yet at the same time, the adrenaline and desire to beat you is intoxicating.

I often think we have a toxic relationship. You take and take while you force me to give everything 100% of the time physically, emotionally and mentally. I still don’t understand why you do that, but I guess your gifts and blessings come out in other ways.

You have made me question my life too many times to count and stopped me from doing what I love most—chasing after my younger brother, dancing, running, climbing, jumping, and potentially having children one day. But the one thing you constantly try to challenge and take from me is my independence.

There are days when you make me feel weak, tired, scared, my arms getting shorter, my legs getting stiffer. Walking 1 kilometre feels like a mile. But perhaps the most significant thing I must comprehend is that you are suffocating me ever so slowly, taking away lung capacity a percentage at a time. Watching the numbers on the screen every lung function test is like watching my future tick down one number at a time, its simply paralysing and yet motivating at the same time. I have to fight you on everything, can’t you give me one thing in the physical realm, like the chance to breathe a full breath again?

It can be a cruel hand you play, taking a little something away when you feel like it. I am at your complete mercy, almost making me bow down to you, as your unrelenting motivation to try and break me never ceases.

So many questions in my head play almost like a broken record: what will my life be like with you? What will you take next? What are you truly capable of? Will you show your hand to me at least once?

The truth is I have seen what you are truly capable of. I have seen what your extended family does; I have been to funerals and watched those I care about most slowly decline as MD continues to take.I have been a sounding board, an ear, and a shoulder to cry on as they worry and are uncertain about their future. I do this, all while you sit in the background, working your own Voldemort powers over me.

Not only do you have complete control over our bodies, it’s like you have control of our minds as well. Making us question our worth, value, and our place in this world; our confidence so quickly shattered by one glimpse from a stranger, making us want to hide away like a hermit, and never truly experience what life has to offer. Did you know that I have friends tell me they think they will never find love and happiness because of you? I have gone through my doubts because of you as well, but I simply ask for my friends you give them at least someone that loves them unconditionally.

I have had to watch my parents come to terms with the reality you bring. Sharing many tears together, fears, and multiple heartbreaking conversations that will potentially haunt me forever. Because the reality is no parent should ever have to contemplate the thought of maybe outliving their child. And no child should ever have to discuss mortality with their parents.

Watching my brother learn about you and be perhaps my biggest cheerleader has been heartwarming and at the same time, incredibly difficult. Listening to his friends be so accepting of you and wanting to know more about you I could tell made him relax. Perhaps the one thing you haven’t taken away is our typical sibling bond, and for that I thank you.

You have made me contemplate things that no young human should ever have to consider. People I once thought would be in my life forever walked away because of your never-ending quest to take me from this world. How should anyone ever be forced to go through that?

However, just as much as you take, you have been perhaps the biggest blessing in my life. You have made me grow up faster than probably what I should have. Doctors’ offices as a young child, hearing difficult conversations the doctors were having with my parents, hearing my parent’s concern for the quality of my life in the future.

Having to explain to every person I met who you were and what you were doing to me. Sometimes no matter how hard I try to explain to people about you, they still don’t fully understand. But at the same time, you constantly showed me just how strong we are together. Growing up faster meant I learnt how to have serious conversations earlier and find the deeper meaning of life.

We work oddly but in a good way together. You know how much I love a challenge, and you always amaze me with what challenges you can cook up. To meet your challenges, you have had to make me change. You had all the power when we started learning to live with one another. But I am taking some of the power back.

Years ago, I was anxious, shy, completely introverted, unsure of myself, had body image issues, contemplated hurting myself, and had self-worth issues. I felt like I didn’t deserve love and happiness. However, little did I know that I would combat all of these things just simply by getting to know you more and accepting you instead of being in denial of you.

That power struggle has ultimately led to some incredible moments I will cherish forever—meeting new friends, creating a blog, finding a potential career path I love, speaking at functions and panels, and taking trips of a lifetime. This blog was started because of you, to help people know more about you and your Muscular Dystrophy family while helping those who live alongside you find their zest for life again. There is something magical about having you in my life that I would be lying if I said I hated you completely.

Because the truth is, I don’t hate you. Shocker, I know. I am blessed to have you in my life for all the incredible highlights you and I create. The good ultimately outweighs the bad. You may continue to get the upper hand, but I enjoy the challenge of taking you on. I thank you for the memories, the adventures, the good times, as well as the bad times.

Even though I still contemplate what life would be like when there is something that could finally free me of your vice-like grip, I don’t know who or what I would be without you. Know one knows exactly what the future plans, even with you being by my side, I also don’t know—thats why I am determined more than ever to keep Living Abled My Way with you. I know there are more pieces to your puzzle, our puzzle, to solve. And I am ready for it. Bring it on.

With gratitude, your frenemy,

Rhi.