Why I’m Not Looking For A Cure

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Although my disease is said to be incurable,  I can’t help but wonder why I should waste my time and energy on worrying about a cure.

I’ve seen some with my disease and other such illnesses pour a lot of energy into looking for the latest news, going to events and actively bringing awareness on their respective diseases.

These are all very good things – they’re just not for me.

Over the past several months, I’ve come to regard my illness as not such a bad thing. This also led me to the conclusion that I don’t care if it’s cured. If medical science came up with a magic pill or operation that promised to rid me of all my symptoms, I don’t think I’d take it.

Here are my thoughts on why I’m not looking for a cure.

A Case for Strength

At first, being diagnosed was a little distressing. I have what’s known as Spinocerebellar Ataxia. If you’re not familiar with it, it has several key symptoms in common with Parkinson’s, Huntington’s, Multiple Sclerosis and others.

I’ve come to realize somewhat of a paradox: the thing that makes me weaker also makes me stronger.

I have daily struggles, but in the process of those, I can see the inner-strength I’ve been forced to build to endure and overcome. Surely that is nothing to take lightly.

Further, working through whatever it is I go through, I find I need a large dose of mental toughness. This will prove invaluable, I think, the situation should worsen.

No Risk, No Reward

If I get cured, where does that leave me? That’s a question I often ask. I am part of some communities online where I hear from others with SCA or other similar diseases. I see some messages about new medical research and how a cure is coming, etc. I understand it totally. These rare diseases are no walk in the park.

However, I can’t help but draw parallels and speculate on metaphors.

Here’s one:  If I had the inclination to win a gold medal for Canada in the Olympics, but was just given the medal instead of having to work for it, there would be no value in my eyes.

In fact, there is a multitude of analogies you could refer to.

The victory is in all that valuable learning  I get along the journey, not of the achievement of some goal.

A greater purpose

I have understood for some time that my life has a purpose. That is to say, there’s a reason I am who I am.

Sometimes we don’t see what we have until all the pieces come together.

I realized that the reason I fell in love with the martial arts and fitness is that I would need that strength later on to battle what I’m going through now.

I am a quiet guy for the most part. That lends itself to a lot of time spent reading and studying. Nowadays, that is really coming in handy.

So my question would be: If there’s a greater purpose at work here, who’s to say I don’t want my disease?

I love being inspired by great lives. One of my great inspirations is Mohandas Gandhi. Somewhere in the middle of his life, he abandoned his worldly ways for the pursuit of his great purpose. He struggled, persevered, faltered and paid for it with his life. Sad as it may be, his death propelled his message across the globe.

The same could be said for Martin Luther King Jr., Malcolm X, Ignatius de Loyola, Saint Theresa of Calcutta, Siddharta Gautama and certainly Jesus Christ. Take your pick.

 


Thanks for taking the time to read this. I’d love to know what you think. Please comment below. If you found this post helpful, please share it on whatever social media you prefer.

Mark

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By |2018-09-16T16:19:07+00:00February 1st, 2017|Mark's Journal|

6 Comments

  1. Zoey February 12, 2017 at 2:54 am

    Wow, what a beautiful post. I have a chronic disorder that is very rare. Familial Dysautonomia is part of who I am, and I also wouldn’t want a cure. I talk about it in my blog, if you ever feel like checking it out 🙂

    • Mark Desa February 12, 2017 at 9:17 pm

      Thanks, Zoey. I’ll check it out! 🙂

  2. Hannah Green February 7, 2017 at 4:48 am

    A brilliantly written and structured blog, i found it enjoyable and interesting. Your strength and positivity shines through and I think you’re right, there are reasons for most things that prepare you for what’s to come and your personality obviously means you have the strength to see that. Thank you for sharing such an important blog.

    • Mark Desa February 7, 2017 at 3:24 pm

      Thank you so much for the kind words.

  3. sharon February 2, 2017 at 11:27 am

    Your a excellent writer and I agree with you 80% that’s the days when this friend of mine doesn’t affect my work and it lets me do what needs to be done.

    • Mark Desa February 2, 2017 at 12:28 pm

      Thanks, Sharon. I understand. It’s a tough gig. I have my rough days too where it’s hard to see any kind of light.

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