Dear younger self - Nothing could of ever prepared you for this journey!
Dear younger self - Nothing could of ever prepared you for this journey!
I never even heard of Muscular dystrophy until one day as a young 20-year-old I walked into Professor Hardiman’s clinic in Beaumont to receive my diagnosis. Its now over 20 years later and I am still not prepared for the road ahead. Also I certainly wasn't expecting a cancer diagnosis along the way, to go with it. I don’t think you will ever be prepared emotionally, physically, or mentally when you’re a ticking timebomb for your disease and especially when you don’t know if its going to kick up a couple of gears and if the Muscular Dystrophy will get more aggressive or progress at the same rate.
So, if I could tell my younger self anything it would be the following.
To quote Oscar Wilde "Be yourself; everyone else is already taken.
Be yourself, not everyone will like you, but they do not have to. Know your self worth and do not let people disrespect you. Do not care if people talk shit about you, as you were raised to flush shit down the toilet, and not play with it. Not everyone is on the same life path. Do not be in a rush to settle down and get married just because everyone else is doing it. What you want in your twenty’s can dramatically change in your thirty’s. Spend time on your own, be self-efficient and know that you don’t need to rely on anyone. Love yourself first before trying to love someone else.
Respect and know your body and listen to it: Be your own advocate fight for your health. To all the people reading this know your own body, so you know what is normal for you. Plus know that its ok to be angry with your body for betraying you and getting sick and you may have to fight a battle more than once to survive it. You need to also allow yourself to grieve the things your illness took from you.
You cannot stick a flower in an arsehole and call it a vase: For the sake of your mental health and happiness avoid all assholes. There will be times and circumstances certain people will act like radiators, that they are only there to drain you and use you when the conditions are right for them. Do not waste time on someone who is not willing to make the effort to spend time with you. Healthy relationships to not need to be forced.
Real life is not like what they portray in a Walt Disney Movie: Sometimes the only reason the grass looks greener on the other side because its only fed on bullshit. You can kiss as many frogs as you like, and you will not find your perfect prince charming as they do not exist, and who the fuck wears glass slippers anyway.
Do not look back you are not going that way: Don’t get stuck living in the past, it’s done try parking it and unless you do this you can’t look to your future. Travel as much as you can before it is too late and while you still can.
Thou shall not judge because thou have fucked up before too: No one is perfect. Learn from your mistakes and move on. Life is too short to be stuck in a moment or a place. A mistake is a one off, but you need to know that if you make the same mistakes repeatedly then that is a decision it’s your life choice.
Keep your circle small and loyal: Not everyone is your friend, and not all family members have your best interests at heart be careful who you trust. Everyone will always want a piece of you when things are going well and when you are the life and soul of the party. Only devoted family and friends will weather the storm and life challenges with you. Your work colleagues are not always your friends. Ask yourself if you were to leave that job in the morning would they still be in your life. Loyal friends do not judge you but support you. Long term friendship requires effort from both parties and its not one sided.
Take a Risk: We have regrets about things we wished we had done. A failure teaches us lessons a regret teaches us nothing. Every day is a school day, be open to learning and trying new things especially the ones that bring you out of your comfort zone.
Manners cost nothing, always be polite and have manners, and have respect for other people. Don’t let a hard life or illness harden you and make you bitter. Yes, sometimes if will seem like you were dealt a hard deal but remember there always will be someone else who is dealing with more than you.
Go buy the god damn shoes, one day your feet will be sore, and your legs will ache, and you won’t be able to rock those 4-6 inch stilettoes anymore.
Love and cherish your Grandparents and Parents: The circle of life is cruel and at any minute loved ones can pass away. One day they will be gone, and you will not get the time back again. Learn from their life experiences. Tell them you love them and visit them more often.
Finally the most important bit of advise I would give younger self is;
Your illness isn't your fault and doesn't make you a failure.
It is completely beyond your control, and you are doing everything that you can., and if today all you did was hold yourself together, be proud you did just that as
you don't know how strong you are until being strong is the only option you have.
Until next time,
Siobhan Malone McBarron xo
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