The Best Thing That Ever Happened To Me: Getting Diagnosed With An Incurable Disease

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Getting diagnosed with an incurable disease was undoubtedly the best thing that ever happened to me.

That sounds like a pretty preposterous idea – at first glance. If you or anyone you love has been diagnosed with an incurable disease or life-threatening illness, you may know that it is a very stressful time.

All sorts of worrisome questions ran through my head. What is going to happen to me? How will people see me? Since my disease is progressively degenerative, when will I no longer be able to dress, feed or clothe myself?

After getting over those first few tentative weeks and months – where I was very unsure and insecure, I started to grow and evolve. Or rather, as Tim S. Grover might put it “get back to who I really was”.

In a book I am reading now, The Book Of Joy, the Dalai Lama has this to say in reference to his own suffering (his turbulent escape and exile from his home of Tibet):

” There are different aspects to any event. For example, we lost our own country and became refugees, but that same experience gave us new opportunities to see more things. For me personally, I had more opportunities to meet with different people, different spiritual practitioners, and also scientists. This new opportunity arrived because I became a refugree. If I had remained in the Potala in Lhasa, I would have stayed in what has often been described as a golden cage: the Lama, holy Dalai Lama.”

Likewise, there are several great things I feel might not be if my world hadn’t been shaken up by that diagnosis. If I had remained in that depressed, angry, painful state I was in prior to my diagnosis, I would definitely not be here – let alone writing this post to you.

Here then are a few reasons I feel make this the best thing that ever happened to me.

1. Rediscovery Of Myself

In my younger days, I used to love to read. My mom taught me how when I was around 2. As a quiet kid, I took to it like a duck to water. I could get lost for hours by myself.

Fast forward to my early 30s. I was not reading at all really.

Most of my time was spent eating, drinking, partying, watching TV. A lot of things to distract me from the fact that I was in pain, unhappy and angry frankly. Most of this was due to my particular disease (Spinocerebellar Ataxia), but I’m sure my circumstances at the time contributed to a degree. It’s hard to say.

In my estimation, a lot of the times when we find ourselves in the grips of addiction (however you define it), they are an attempt to quiet down that guiding inner voice that knows what we should be doing – even if we don’t. It wasn’t until I was diagnosed and basically forced to take a long, hard look at my life that I decided to make some drastic changes.

I started to watch inspirational movies, TED talks and read books. Slowly my eyes were opened and I remembered things I had forgotten or ignored rather. That’s the great thing about education, it can pull people out of the darkest situations simply by changing the way we think.

2. Getting Back To Martial Arts

I started my martial arts journey back in my mid-teens. I continued it sporadically throughout my 20s, but all but abandoned it by my early 30s.

A combination of work and my health had dragged me down to the point where I just didn’t care about much. I had forgotten some key lessons that I had learned in my early days as a martial artist.

Looking back now I find it kind of ironic (and funny) that having extensive martial arts experience, I should also be burdened with a disease that threatens to take away my ability to move.

In any case, one of the major lessons of my training – and indeed, of any martial arts education – was the belief that I could do anything if I just put my mind and discipline to work on the problem.

After some tough examinations of my own situation, I returned to Kombat Arts Training Academy where I currently help as an assistant Muay Thai coach. My goal is to get back to karate eventually and train for my black belt.

3. Reconnecting With My Parents

One of the things that definitely suffered during my early 30s was my relationship with my parents.

I was going through a deep depression and other issues which made me focus on my own pain and effectively close off any communication with my parents. Some interactions were actually quite cold. Looking back, I see it for what it was. Most people who are ill tend to retreat inward and lash out at any attempt to rehabilitate them. It’s a form of self-preservation or protectionism. Creativity, Inc. – a book I read (on an unrelated topic) had this to say:

“Self-interest guides opposition to change, but lack of self-awareness fuels it even more.”

What added to my depression, I suppose, was that I was living a life with which I was not comfortable. Basically, I was kind of on autopilot. Just going through the motions. It wasn’t until I received my diagnosis – which effectively shook up my world – that I could make an effort to change.

Part of this change was communicating more effectively with my parents. Whether due to my disease or to my own nature, I had a tendency to withdraw from others and keep a lot of thoughts and feelings to myself. That’s a recipe for disaster. I’m just thankful that I was given the opportunity to right my ship before it sank.

4. Countless New Connections

Towards my mid-30s,  had become increasingly withdrawn. I didn’t hang out with friends much. I was quite anti-social. I spent several days a week in bed or watching TV.

Through the last two years or so, I have made so many connections as a result of me having Ataxia. I now have friends and acquaintances in the Ataxia, Parkinson’s, Huntington’s, Wilson’s, MS and MD communities. These groups or disabled people, in general, were not even on my radar.

I have made new relationships through networking events that I would have attended if I wasn’t diagnosed with an incurable illness.

5. A New Direction

Something strange happened after I was diagnosed. I mean, there was the standard grieving period as you would expect. But after that, I was filled with this intense fire.

I realized that my doctor’s opinion was just that – an opinion. I became determined to fight back against my disease and show him he was wrong. Whether I do this or not is another matter, but I don’t give up.

We live in the greatest time in human history I believe. I know there are problems. But we have access to information and tools on unprecedented levels. If I need to find out how to fix something, I can simply educate myself. I have the ability to connect with someone from the other side of the world who has done or is doing what I want to do.

My mission has become to motivate and inform others of the power they have to rehabilitate themselves by taking responsibility for their own health.

6. Total Control

I watched a good movie lately called Be Here Now about Andy Whitfield, the former lead actor from the TV show Spartacus. The film documents his struggle through a deadly form of cancer that would eventually take his life.

In the film, Andy touches on a point which I didn’t realize until I heard him say it. He expressed gratitude for the fact that his cancer had reached the point where the doctors felt nothing more could be done. That gave him a sense of freedom to treat himself in the manner which he saw fit.

Likewise, I feel I have a freedom. Since my neurologist and other doctors believe I am incurable, I am free to do what I want. I can try alternative therapies. I don’t have to take medicines I don’t want to or do experimental therapies.

Conclusion

The bottom line is that I don’t think any of these things would have come about if I had not been motivated by my diagnosis. The person I was before my diagnosis and after are indeed very different. What I failed to realize was that what I initially saw as a curse was actually a blessing.

 


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By |2018-09-04T10:58:19+00:00May 3rd, 2017|Mark's Journal|

4 Comments

  1. Patty Beiner May 30, 2018 at 5:41 pm

    No I haven’t…Who are they & how do I get a hold of them?

    • Mark Desa May 31, 2018 at 6:37 am

      If you’re on Facebook, you can just look up those names I gave you. Parkinson’s Disease Fighters United (https://www.facebook.com/groups/pd.fighters.united/) would also be a good group to join too. If you need help, just look me up on Facebook. Mark DeSa.

  2. Patty Beiner May 30, 2018 at 11:01 am

    Wow! Thank you… I Am Stuck! TV, Sleep, Depression & I CAN’T SEEM TO?GET GOING TO THE NEXT PART OF ACTION GROWING.
    With my PARKINSON’S Now Diagnosed for THREE yes…In the other 7 years of 10, in which I was so emotionally drained, up & down, rage, and sadness. In the process my four Adult Kiddo’s wrote me off. They thought I was drinking and drugging. They now know & I’ve made my amends, but they’ve moved on.
    I belong to a 12-step program and I’ve A LWAYS been a Go Getter… My Kiddo’s & ‘Friends’ have/must be very uncomfortable to be around me… I get it.
    No access to car, and Disability pays crap. I was 52 when this happened…
    I know my growth is a Process-Cant seem to get up…thanks for a great article. Blessings

    • Mark Desa May 30, 2018 at 1:19 pm

      Hi Patty. Thanks for your comment. Have you tried reaching out to Gary Sharpe, Christian Banda or Darbe Schlosser? I’m sure they could provide better assistance to you. God bless!

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