Lucy Beaty is 37, and lives in the South West with her military husband and 4-year-old westie called Eric. At the age of 34, she was diagnosed with Parkinson’s and her life changed dramatically. Below she shares her story, of overcoming the initial diagnosis, to taking on a great adventure.
Thank you so much Lucy for sharing your story with me and inspiring other military spouses to ‘go big, or go home!’.
April 11th, 2019, I have never cried over a FaceBook post as much as I was crying over the post I was writing. For anyone who doesn’t know April 11th is world Parkinson’s awareness day, it seemed oddly poignant somehow. The post read…
‘In the spirit of owning my shit for anyone who doesn’t know I have Parkinson’s!
I am still smart, funny, beautiful, loyal, adventurous, kind and brave.
I love music, movies, history, travel, art, baking, jewelry, tattoos and my Westie!
I am proud to be a military wife.
I am obsessed with Tom Hardy, Corey Taylor and the Foo Fighters.
Parkinsons will take lots of things from me but I am so much more than it’
The past 2 ½ years have been one heck of a rollercoaster I was diagnosed with Parkinson’s at the age of 34 and although the condition is most common in older people it can affect anyone at any age. Statistics vary but generally, it is agreed that around 5% of cases appear in people my age. It is not just a thing that old men get.
I remember the feeling when I heard the words come out of the doctor’s mouth it took my breath away and there was a distinct internal sense of being buffeted and falling. Looking back the best metaphor I can come up with is it was like being trapped inside a snow globe that someone just keeps shaking. The next few days were a combination of hysterical crying and 1000 yard stares, there was then this crushing sense of numbness.
I would later learn this was the start of a grieving process which even now physically hurts to think about. It was a very tangible thing I could almost reach out and touch it, it truly like grief at the loss of the person I was. I don’t care how progressive and emotionally robust you are we all have a way we like for people to see us and my view of my 30s never included blue badges and walking sticks. One thing I learned that really sucked was that there was no quick fix no magic solution, I had to let it surround me, knowing in time that it would settle and I would be able to pick my way through it.
For the next few months (and by few I mean 10-11 months) the business of life moved on, this time is kind of a blur I remember things that happened but it seems a bit like watching a movie. I realise now I had emotionally shut down, what had happened was just too painful. The only real feeling I can recall from this is a big swirling mix of shame, embarrassment, fear, and anger. There was a tiny hopeful corner of my mind that really believed I would wake up soon and it would all be some sort of awful nightmare…….
For the next part to make sense I have to confess something I LOVE THE FOO FIGHTERS I am a massive live music fan and I am obsessed with anything to do with Dave Grohl.
Anyway, this was around the time the Foo Fighters were advertising a series of concerts that included 3 in the UK. I looked at the website with some sense of self-punishment longing for the days when I could just decide to go somewhere and go there. I had an ever growing list of things I assumed I would never do again and going to a concert was firmly on that list. Something made me look and I am so glad I did. What happened next I refer to as my aha moment you see as I aimlessly scrolled through the ticket booking site and a ticket classification jumped out at me Ambulatory Disabled tickets. Even though I knew what the words meant I had never seen that term before so I googled it:
“a person who has a permanent disability that is not a wheelchair user”
Often referred to these days with the term invisible illness. It was a weirdly exciting feeling when I realised that was me!
A spontaneous adventure?
My mind was set I was going, I got the tickets and set about planning a massive 3-week adventure that started with 2 weeks in Thailand and ended with the concert at the London Stadium. Yep, you heard me right the person who until that point thought they would never leave the house again was planning an adventure halfway around the world. I am the most rubbish person in the world at asking for help but one thing I have learned is most people are essentially quite decent and will help if they can. I had been doing a lot of reading and realised how many support options there were out there, I have always been the type of person to go big or go home. There is a phrase I repeat to myself when I plan on doing something that scares me, I ask myself what is the worst thing that is likely to happen? If you are able to answer this question honestly the answer is usually not that bad. The fact is people stare at people it is just a thing that happens if people are staring at me I tell myself it is because I am just that beautiful!!
Some people are just assholes!
For all my experiences with decent kind people, I do have to say some people are just assholes. I don’t even pick up on the sideways glances anymore. I had an experience walking through Canary Wharf in London which makes me seethe with rage. Firstly let me put it into some context – it was the end of our epic 3-week adventure I was fuzzy from jetlag and running on a mix of adrenaline and stubbornness. When I am tired walking is very difficult and on this particular day is was exhausted so I was walking with sticks. My husband had gone on ahead to buy tube tickets. It was a sunny Saturday afternoon as I walked past a packed bar and I was loudly mocked and my walking impersonated. I was horrified as I felt the burning gnawing feeling of public humiliation in the depths of my very soul. Fact is I firmly believe the cowards would not have dared do that if I hadn’t have been alone so I say shame on them!!
The fact is Parkinson’s will take away many things from me but I am so much more than it. In less than 3 years I have had my world turned completely upside down and had to totally redraw what my future looks like. It has been traumatic and is still very much a work in progress but has been oddly liberating. You see before I used to be horrified by any attention but now I ask myself “what is the worst thing that can happen? Is it worse than what has already happened? No? Ok, let’s go for it!”. I have gone from assuming I would never leave the house again to flying halfway around the world, feeding elephants in Thailand, hunting Leo DiCaprio’s Beach, visiting James Bond island, eating gelato in Rome, visiting the Colosseum, admiring London skyline from the top of the Shard, taking a jet boat ride down the Thames and attending multiple concerts.
I do have on plea to make to anyone who knows me now or who I meet in the future please don’t:-
- Tell me about your Grandmas neighbour who has Parkinson’s
- Ask me to play Jenga
- Ask me to carry a tray of drinks
- Expect me to eat peas with a fork
- Expect me to get anywhere in a hurry
It will not end well for anyone! deal??
Take every opportunity…
I don’t have all the answers far from it but I do know the world is incredible and exciting don’t miss it. There is no one size fits all solution for when life turns your world upside down. Everything is temporary, every sadness every joy it is all temporary. If you are enjoying life right now savour every second and if things are dark right now hold on the light will come back. When it rains you need to look for rainbows. When it is dark search for stars. Life is too short to not do all the things. Take every opportunity, dance every dance, sing every song.
When the darkness creeps up on me thought I would share a photo that brings back the light, it may work for you one day