April, 2021
Yesterday was the 1 year anniversary since my diagnosis - wow! Where to begin… it’s been a hard few days reflecting and thinking about everything that has happened over the last year, 2 years in fact since my symptoms began. I’ve had to start making a will and power of attorney, things that are confronting. It’s pretty upsetting at my age, thinking about leaving everything I own to my loved ones. It’s hard not to reflect and wonder what might’ve been if things were different. I watch travel videos of all the places I wont get to, watch all my loved ones get married, have kids, buy houses - all things I will never get to do. It honestly breaks my heart, but there is always a silver lining.
We always want what we can’t or don’t have, but for many of us we take for granted what we have in front of us. For me a lot of what I want now is unattainable, impossible, a dream. I learnt early on I needed to change my mindset because previously I would always get to where I wanted through grit and hard work. I’ve never given up at anything I’ve done and this is no different. I will keep walking to my last step and keep breathing until my last breath. I’ve heard many say people lose themselves in disease, and I’ve seen first hand how it can change people, and not for the better. For all the things I have lost, the relationships, the potential, the things i will not get the opportunity to do, I have gained the one most important thing in life - myself. I know myself better now than ever before and I’m enjoying life more than I ever have. Not because I’ve been able to achieve my life goals, but because I now know life’s value. That’s the thing about life, its fragile, precious and unpredictable and each day is a gift, not a given right. People go through their entire life through a cloud of pressure and judgement on what their life should be, and miss out on enjoying the daily treasures life brings. Through every failure, disappointment, obstacle, set back - there is always an opportunity. I’ve been given a period of time to enjoy life, create more memories with my loved ones and find myself again. For that I will forever be grateful.
So in light of going through easily the toughest year I’ve been through to date, here is what I’ve learned and wished I’d done in my 31 years of life before diagnosis. If it can help you, bring you back down to earth or give you an opportunity to change a few things, fantastic - if not give it a read anyway, share it. Remember it’s about learning and raising awareness of this disease, but also about enjoying every ounce of life you have. One day you might wake up and everything has changed…
List For The Living
1. Tell your family and friends you love them every chance you get.
All I think about is I hope they all know I love them when I’m gone. Don’t wait, don’t do it later or tomorrow - make the effort now.
2. Get out of bed each morning and seize the f*cking day..
Wake up with a smile and have a crack. There will come a point in your life when it’s a struggle or you can’t get out of bed. Wake up and put your feet on the floor, give your arms a big stretch and seize the f*cking day, don’t wait for life to pass you by.
Be happy and smile at people. Smiles are free. It’s funny when you go to a country or seaside town and everyone smiles and says hello. You come back to the city and everyone has their head up their ass, busy in the rat race, busy in their own thoughts.
3.
Lift your head and give someone a smile today, it might make their day.
4. Don’t take time for granted.
Time is the enemy and it’s what we do with our time that gives us fulfilment. All I used to do was work, study, I was hell bent on trying to achieve my career goals. I took time for granted, I took my friends and family for granted because of it and I missed out on creating memories with loved ones.
5. Money truly doesn’t buy happiness.
When you get to where I’m at in life, money becomes irrelevant. Of course we need to live and support ourselves but at the end of your time you aren’t going to think about all the money you’ve made and saved. I’d give up all the money I have if it even meant spending another day with my loved ones.
Stop stressing about insignificant things in life, it is such a waste of your energy. I used to let things impact me negatively all the time and it was such a waste of time. Acknowledge it, accept it, and move on.
6.
Don’t dwell on the bullshit
because while you’re preoccupied with it, chances are you’ll miss the amazing thing right around the corner.
Control what you can control. I’ve learnt the hard way, you’re never going to be able to control what another person does. I’ve had relationships breakdown, friends not be in touch with me since being diagnosed and all the while my close network getting frustrated and upset at it.
7.
Sometimes you just have to let things go
and control how you are as a person. Let them be who they are, karma is a bitch.
8. Don’t hold grudges.
See point 7.
Get out in nature and breathe in some fresh air.
9.
Go for an ocean swim, hike a mountain, hug a tree, swim in a waterfall. Walk barefoot in the sand or a Forrest. It sounds crazy but I can’t explain how much I feel at peace when I’m in nature, it will revitalise your mind and body.
not just your physical health but your emotional and psychological health. Too many of us think it’s all about your physical image and that a certain body type or weight will make you happy. Being at peace and one with yourself mentally will show you how insignificant having Instagram abs is. My body has deteriorated significantly and the last thing I think about is how I look. I wish I could go back and deal with a lot of the stress and trauma in my life differently and emotionally.
Look after yourself,
10.
11. Instead of texting, pick up the phone and call your friend
I wish nothing more than to be able to speak again and tell people what I’m thinking and that I love them.
12.
Use money on experiences.
I’ve tried to do this early on in my journey. Life is about experiencing not having material things. When you’re gone people aren’t going to remember all the nice things you owned, they’ll remember the amazing things you did together. I made a rule not long after I was diagnosed, if you are going to buy a present, buy an experience. Or save the money and go somewhere with that person. Too many of us place too much value on having more and more things.
Time is finite, don’t waste yours or someone else’s.
Be on bloody time.
13.
Live in the now and take in everything around you.
14.
Live in the moment. Stop worrying about what you have on tomorrow, or about some work meeting
15.
Be kind and help someone in need.
I worked a very long time helping people in the healthcare industry and I loved it, but it was work. It was always part of me getting to where I wanted go. Do yourself a favour and help someone in need, volunteer for a worthwhile charity, organisation or fundraiser without any personal prerogative or benefit. You won’t regret it.
16.
Get a dog.
They will seriously make your day everyday. They’ll teach you a thing or to about unconditional love as well. Best decision I ever made.
17. Don’t be afraid to say sorry.
It shows more of your character when you admit when you’re wrong rather than thinking you’re always right. It makes you no less of a person to say sorry.
18.
Wake up to a sunrise in the morning.
Do yourself a favour and make the effort to go somewhere special and see a sunrise, it’s one of the worlds truly beautiful things. If you can’t then wake up with your blinds and window open. I do this every morning and get to open my eyes to the sun coming up, blue skies and birds singing. It’ll calm you before you seize the f*cking day.
19.
Look at life through someone else’s life.
Be empathetic.
It will make you a better person and help your relationships.
20. Do something nice for a loved one.
Buy them a gift out of the blue, take them out for a meal, give them a call to see how they are. Or do it for some random, pay for their coffee at your local. We walk through life stuck in our own head 99% of the time. Be kind and giving, not only will you feel great for it but you’ll make someone’s day.
Remember you have the power to live your life the way you want to don’t be afraid.
You don’t like your job, quit. You don’t like how someone is treating you, be honest and tell them. You get one shot at life, don’t waste it waking up everyday going through the motions like it’s Groundhog Day. Find things that make you smile, laugh, give you purpose, and find people to share life with. Enjoy the little things and live each day in the moment like it’s your last. That’s one year down, here’s to many more!
Like it, share it, live it.