How Living Life On A Deadline Has Shaped Me

brunette girl with walking stick riding a camel in the desert

Apologies for the morbid-sounding title, but it does represent the truth and reflect how my approach to life has changed in recent years. 

My “deadline” is mostly related to my physical strength and mobility, which is steadily declining. And although it feels less relevant to the present, life expectancy is also a factor, as at the age of 31 I’m probably about halfway through.

Having a progressive and debilitating illness has changed my life; the freedom and opportunities I thought would be open to me in the future seem to be diminished. And the idea of being on a deadline in terms of quality of life has influenced my perspective and my approach to each day.

Interestingly, the idea of this 'deadline' has made me so much more present.


shadow of girl with walking stick in forest

Muscular Dystrophy interrupted my twenties

I have a rare form of Muscular Dystrophy (GNE Myopathy) that showed up in my mid-twenties, and that I ignored for a long time.

We humans are often very good at shrugging off symptoms like a limp or a sudden inability stand on tiptoe. It is possible to laugh such things off, but eventually the sum of all the oddities becomes too great to ignore. 

But would it make much of a difference if people understood what was happening, or what the future holds in advance?
Would I have lived a little differently? Maybe.

I wish I'd put myself first sooner, looked after myself sooner. But, things like this are not really worth thinking about - they cannot be changed and I've no real regrets; I just share this in case someone else is ignoring any strange health issues. Because scary as it is, it is better to know. Once we understand what is happening, we can work with it, and make the most of opportunities.


Gaining Perspective

Developing a disability, and knowing that it will get worse, has changed the way I think and live NOW.

As humans, we suffer emotionally and know we will suffer at some point in the future. I have felt this acutely. I have started to experience pain related to my condition, and this is likely to worsen. Walking is increasingly difficult, and I will need a wheelchair one day. My hands are starting to feel a little clumsy too, my 'pointer' fingers are losing strength and my grip is weakening.

Some options in life are disappearing with each passing day, but with this truth has come clarity and focus. And this has helped me to actually expand my life in ways I never anticipated:

  • I gathered my courage and travelled widely, while I am as strong as I can be;

  • I took stock of the work I had been doing, and moved towards the work I long to be doing;

  • I worked (and continue to work) on myself, to ensure that I am as resilient as possible, and found the beginnings of the peace and contentment I had been seeking;

  • I learned a huge amount about myself and other people, deepening relationships with family and friends and meeting new people even when I felt shy and scared;

  • I began to better understand of what I wanted from the next half of my life, and I am stubbornly taking steps to making that my reality.


Living an increasingly mindful life

Now I embrace the cliché and try to make the most of each day, even when that means thoroughly enjoying a relaxing bath or an evening watching Netflix. I make everything, even a night in, feel like an occasion. I work harder to appreciate everything I am doing in the moment.

And I try to do all of the things I want to, even if it’s difficult, with the awareness that:

  • I will never be physically stronger than I am today. That was true yesterday, and it will also be true tomorrow;

  • Whether something works or not, I absolutely want to try. That’s my stubborn streak not allowing illness to completely get the better of me.

I also try to be smart about planning for the years ahead, but I have learned not to prioritise the future, or wait for it. Some people live life thinking that opportunities will be waiting for them when they retire, or after they find a partner, or once they've hit the next promotion at work. I used to live like that too to an extent, but now I choose myself, and try to make myself happy.

So this all combines to be the ultimate in 'being present', right?! A state that doesn't come easily to me, but I am learning to embrace it. To an extent, I have no choice: we only get one life, and this is mine. So I am doing the best I can, with what I have.


Overall, I am grateful for this life

The last year has provided so much joy.

Twelve months ago I learned that I might not be able to get out of bed without assistance by the time I am 50. I thought long and hard about what I would want to see when I looked back on my early thirties. It wasn't the life I was living; I wanted to see a woman who made the most of opportunities, who courageously did what she needed to do, and who made happy memories. 


Valuing being stubborn

All of this has led to me discovering that I am, thankfully, a bit stubborn. Illness has and is limiting me and I can't change that, but I took back some control when I decided to take care of my own happiness and make my life better. That included leaving a business that made me miserable. It required a re-evaluation of my relationships and boundaries. And it has taken me around the world in the last year with Steve the Stick (who has now been to an insane 11 countries!). 

And it brought me to this moment, in which I am doing work I love. I live a life I love, despite it's challenges. I will continue to try to work through the (daily) difficulties, or at least work with them.

As my options become more limited my life is shrinking a bit, but I am leaning into that. I am going to make that work for me. I am going to keep fighting for my happiness, and help others fight for theirs. 



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Brunette girl with walking stick at the Taj Mahal