My disease dismantles my dreams and it's excruciating - JoelvsArthritis
My Arthritis Story

My disease dismantles my dreams and it’s excruciating

How living with disability and my disease feels like a mid-life crisis and a constant sense of loss.

Recently, like thousands of others, I have been enjoying ‘The Last Dance‘ on Netflix (Netflix.com, 2020). A docu-series about the record-breaking Chicago Bulls basketball team of the ’90s and their ever-driven and fascinating leader, Michael Jordan.

When I finished the 10-part series, I felt a tidal surge of sadness. Particularly as the ‘where are they now/what happened next’ credits rolled at the end. I felt miserable for the remainder of the day and I couldn’t figure out why.

At first, I thought I was mourning for a team that disbanded over 20 years ago. There was an element of not realising what I was missing, being the avid sports fan that I am. Although I would have only been a child/teenager at the time, it would have been one hell of a sporting story to follow live.

But that wasn’t it. It was something deeper. Something that had me on the verge of tears for most of the day. Then it hit me.

Having a new disability is like living with a sense of loss

Everyone’s familiar with the term ‘mid-life crisis’ these days. We’ve all known someone that in their 40 or 50s bought a convertible sports car or started riding motorcycles. Some even go as far as divorce and a younger partner out of the blue (Morin, 2018).

There comes a point in everyone’s life when they realise they are not as young as they used to be. Those dreams they once had are but distance memories. Or they wake up one day and find themselves in a life they never planned. They panic and make rash decisions in a desperate attempt to satisfy an itch they once had in their younger years. Coming to terms with your own mortality makes some people do crazy things.

The realisation of my new reality

Having a disability is a similar experience.

With arthritis, you experience flares and periods of remissions. Months, perhaps years when you are unable to do things you enjoy and other times where you almost forget you are living with a chronic condition. Like a series of mid-life crisis’ well before I’m 40, I have periods of fun, risk-taking and enjoyment and dark periods where the sense of my mortality is hanging over me like a swinging axe. One year physically disabled, the next pain-free, healthy. Normal.

With my current period of poor health, I am learning to come to terms with the fact that this could be it for the majority of my hopes and dreams. My passion for music and participating in sport. I haven’t been able to play sport for 6 – 7 months. To a level I used to and want to, not since 2018. The guitar was put away around 3 years ago now, too.

I’ve had a good run considering my chronic disease from a young age but since my current flare kicked in at the start of 2019, there has been a growing sense of the inevitable about it. The longer the flare lasts, the greater the complications I get, the more areas become affected etc.

When I was younger, I could shake flares off quicker. I could be on crutches one week, back up the park with friends kicking a ball around the next. In my mid-thirties, however, flares are starting to jump from one to the next. Flares within flares. My ageing body can no longer cope fighting on multiple fronts. The years of damage is now externally visible. The years of strong medication slowly causing more issues in the treatment of my disease due to their toxicity.

At what point does this stop being a flare and start becoming my new norm? The baseline. The reality that I have to accept?

I was mourning for what I could have been

So now I understand why I was so upset after watching The Last Dance. It wasn’t a sense of loss for the individuals, the team or what I could have witnessed. It was a sense of loss for myself.

Seeing those credits roll was a reminder that my time has gone for those hopes and dreams. Yes, I can do other things like my writing but like MJ and his short-lived baseball career, I would be starting afresh in the high-noon of my life.

You see, everything I have ever tried I’ve been ok at, the longer I stuck with it, I would become borderline good. I played in a band for ten years, we ended up touring the country and signed to a minor record label. I captained field hockey teams and despite only managing two seasons at rugby, by the second season, I had made a couple of appearances for the 1st team. Then a flare would come along and take it all away from me.

I know I should reflect on these things as achievements but I can’t help but wonder ‘what if’. What if I carried on making music? What if I was a healthy child and never stopped playing rugby at school? What if I would have kept my confidence over all those years that arthritis was slowly taking it from me?

Arthritis makes me who I am today and I don’t think I would ever change that but I am still in mourning for the dreams I once had. This isn’t a mid-life crisis – I’ve been adjusting to crises most of my life, except I call them flares and remission.

References

Morin, A. (2018). What Are the Signs of a Midlife Crisis? [online] Verywell Mind. Available at: https://www.verywellmind.com/what-are-the-signs-of-a-midlife-crisis-4175827 [Accessed 27 May 2020].

Netflix.com. (2020). The Last Dance. [online] Available at: https://www.netflix.com/gb/title/80203144 [Accessed 27 May 2020].

Wulf, S. (2020). The true story behind Michael Jordan’s brief-but-promising baseball career. [online] ESPN.com. Available at: https://www.espn.co.uk/mlb/story/_/id/26449232/the-true-story-michael-jordan-brief-promising-baseball-career [Accessed 27 May 2020].

5 Comments

  1. I have to watch this. I use to snowboard, go raving, and make jewellery, but alas most things except raving (but sat down) and it’s a greiving process. I’ve had 10 yrs of 10 surgery’s to finally emerge from them, and boom I’ve now got arthritis. It sucks

  2. Rick Phillips

    I may be the only person on the planet who is really not all that interested in watching the last dance. I guess I am glad I watched much of the first dance on TV. Of course I went all in on Tiger King. Then I was all over Dexter and then I rounded out on The Wire.

    Now if you want some fun and stupidity catch Lodge 59 on AMC. It is only 20 episodes and was canceled after. But it is a strange wild ride. Much like any stupid lounge in check comedy that does not take anything especially itself too seriously.

    As for strange dreams? If Lodge 59 or Tiger King fills your dreams, you will know that at least MJ has company and he can leave you alone.

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