Welcome back to our series "Letters to my younger self".
If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?
In this series, RARE Youth Revolution are reaching to some of the older members of our community who know what it is like to grow up with a rare disease. By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.
In this edition, it is the turn of Ross Lannon. Ross started his blog "A life on wheels". Ross has a condition called Spinal Muscular Atrophy and started his blog in 2017 as way to document his life as a young adult living with a disability.
This is Ross' LETTER TO MY YOUNGER SELF!
Well well well… look who we have here!
It’s been 27 years since we last spoke and a whole lot has happened since then. Believe it or not, the world still doesn’t revolve around you - shocking I know. As a kid I know you hated reading, so I will try to keep this letter as brief as possible.
The most important thing that I wanted to share with you first is the fact you’re happy and still smiling all these years later - which really is all that matters.
You have an incredible family around you and you are blessed with some of the best friends you could have ever asked for. You may not get to spend as much time with them as you would like… some of these friendships may be online, and hell, some won’t even live in the same country as you anymore, but trust me when I say true friendships will last the test of time.
In terms of your childhood, you are lucky to have been born in the 90’s. The world was a much simpler time back then, so please make the most of that freedom and enjoy life without the pressures of social media.
When it comes to your disability, I think you are going to surprise a lot of people.
Diagnosed with Spinal Muscular Atrophy at age 2 and half, you’re not going to remember much about your younger days. All I can say is that you will fall over a lot, and hospital appointments will soon become your second home.
However, you will quickly learn to adapt to this new way life with support from various mobility aids - such as your first yellow wheelchair, called LaLa. You may feel self conscious at times because YES, people will stare. But just remember that you get to skip the queues at Disneyland - so it’s not all bad!
They say that your school days are the “best days of your life” - which I know is hard to believe at the time, but trust me they’re right. One day you will miss the simplicity of that routine and the chance to spend so much time with your friends. College will be much tougher for you, and the anxieties surrounding your disability will really push you to breaking point.
But you are stronger than you think and you will get through it.
In your teens you will reluctantly join a disability charity called Active8, and although there will be many tears at first, I promise you it’s the best decision that was ever made on your behalf. Your confidence will sky rocket and becoming friends with people who have other conditions will open your eyes to a whole new perspective.
As you get older, you will continue to lose strength and will eventually become a full-time wheelchair user. This will be a hard adjustment for you at first, but promise me that you will never stop challenging yourself, because there is so much more to you than just the four wheels you sit on.
Puberty will be kind to you, so at least you don’t have to worry about that! It’s amazing what a bit of facial hair can do to you Ross.
When it comes to your health, all I can say is please drink more water. Your kidneys aren’t the best and as much as you love your food - you do need to watch what you eat.
Becoming more independent will only help you in the long run, so please don’t put up such a fight when it comes to accepting help from others and moving away from home. Be brave.
OH and when I say moving away from home… I only mean two doors away from your family, haha.
From a young age you have always had a passion to work within the world of TV and media. My only advice to you is NEVER GIVE UP, because I guarantee the harder you work, the closer you will get to that dream.
Enjoy those family holidays, take more photos and don’t be so afraid of your own shadow. Drive that car, date that person, get that job. Life really is for LIVING.
The year 2020 will particularly test you… both physically and mentally, but just remember that you are not alone. Sadly the word Corona is not just a beer anymore, but it will make you appreciate those people around you so much more.
Young Ross, I hope you enjoyed this letter. Please keep breaking those boundaries and never lose that cheeky charm. Life is not perfect and you will have many ups and downs, but just remember that it is these experiences that will help you grow and learn to appreciate what you already have.
Ross' blog "A life on wheels" can be found here If you would like to be a part of our "Letters to my younger self" series, you can get in touch with our youth coordinator James Brooks at firstname.lastname@example.org