Updated: May 5
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 slightly 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.
This entry comes from Hawken Miller! Hawken lives with Duchenne muscular dystrophy.
This is Hawken's LETTER TO MY YOUNGER SELF!
Dear younger self,
You aren’t going to be a star football player, a stunt double, or a soldier. Instead of impressing people with your physical actions, you are going to impress them with your words.
I know you want to keep up with your friends. I know you wish you could just be “normal.” I know you wish that you could be as tall as everyone else, ditch the scooter, and pass on a teacher helping you into the school bus. I know you wish people could see you and not your circumstance.
I hate to be the bearer of bad news. Those wishes will not come true. But you will gain so much more instead. You will find God in the midst of darkness. You will develop lifelong friendships that mean more — because you’ll be reliant on them for physical help, and they will rely on you for encouragement and inspiration. And you will find a fulfilling career.
It’s hard to see your whole life ahead of you, but I’ve already seen 25 years of it and it is probably better than you expected. All of these little things that frustrate you today will be specks of dust in the future. You’ll realize what really matters and slowly discover that being short and using a wheelchair doesn’t prevent you from experiencing life. It looks different, yet it is no less impactful.
In the future you’ll lose some of the abilities you once had. It will be hard to predict what and when. That means you’ll need to prepare yourself to ask for help. And don’t worry so much about what other people think. Most of the time, people are willing and able to give assistance.
You will encounter a myriad of emotions — love, anger, sadness, grief, heartbreak, joy, happiness, doubt, and fear. At least that’s something you’ll be able to share with your friends. Through it all remember that your life is a gift and everyday is a blessing, even if it’s hard, even if you want to give up, and even if there are some tears along the way.
When the going gets tough, remember how many people love you and you’ll start to feel better. Look and see how your parents provide you food, a home, and an education. Observe the little things they do to make you happy — buying your favorite lunch, fluffing the pillow in the way you like, and simply carrying you up the stairs. Open your eyes when your friends help you without asking, when they have a normal conversation with you, and when they see you as an equal. Remember the grace that God has given you, even if you feel undeserving of it.
Enjoy being a child. Please, don’t worry so much about school and homework and understanding every concept. Try to have a little fun. Do your best, but not at the expense of hurting yourself or letting life pass you by. You’re going to make mistakes. It’s a part of life just as certain as death and taxes. Embrace the learning process.
All the things your parents tell you that you shrug off will become important in the future. You need to understand they won’t be around forever and that it will eventually be up to you to take charge of your life.
Just because you have Duchenne muscular dystrophy doesn’t mean you should expect everything to be done for you. Don’t expect special treatment, because if you do, you are setting yourself up for disappointment. Constantly humble yourself because droves of people will know you and look to you for advice. Be the example that you would want to follow.
It’s important to understand what you are up against: Duchenne. You will get weaker and when you are older like me, you’ll think to yourself, “I can’t believe I once used to be able to do that.” So appreciate the little things, like getting up from the toilet on your own. Don’t be scared of what the future holds, because you will adapt like you always have. Technology will progress as you digress, helping stabilize your quality of life.
While you carry a heavy burden, the blessings that you find everyday will make it lighter. You live in beautiful Southern California, you come from a privileged economic background, you have the best doctors in the world seeing you. It’s also an opportunity for you to spread the knowledge you gained and care that you receive to others with the same condition.
Never forget what’s been done for you, and do your best to give back in whatever way you can. Life will be filled with peaks and valleys but remember — every morning is the beginning of a new day.
You, but older
Hawken Miller is a journalist covering the rare disease and video game space. He currently is a features writer at BioNews and his work has appeared in The Washington Post, The Orange County Register, and Dot Esports. Miller also helps raise money for research and advocates for others living with Duchenne muscular dystrophy through the nonprofit CureDuchenne.
Written by Hawken Miller as part of our "Letters to my younger self" series
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