This October-November marks five years of battling the fiery, cold burn of Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS). So I feel like it’s time to write a letter to my 16-year-old newly diagnosed self… I hope that newly diagnosed patients can also learn something from this.
Dear 16-year-old Meg,
You’ve just embarked on a perilous journey that you want nothing to do with. I know you are in a level of pain most people will thankfully never experience, but I know that is very little comfort and you have no idea how you are going to make it through the next minute. I understand that you are severely sleep deprived and that making your body function at the bare minimum is a challenge. You can’t imagine how you are going to play basketball again or ski this winter, if you barely have enough energy to get through the day. You are wondering how you will ever finish your junior year. Will you ever drive? Will you ever manage to have a job? Will you manage to graduate from high school? Will you go to college? Will you graduate from college? Is the world ending?
Although you thought for sure that your world was coming to end most days, I’m here to tell you that five years later, your world hasn’t ended. You finished your junior year with your straight A’s. You learned to drive and got your license. You have had jobs. You earned your EMT certification. You graduated high school. You went on to the college of your dreams, Pitt, and even though you haven’t graduated yet, you will graduate in a year. You’ve done so many other things as well, that wouldn’t have happened if you hadn’t gotten sick. You wouldn’t have so many of your friends if you didn’t get sick. People you can’t imagine life without.
Now, at 21 years old, you know that life is so very fragile and precious. You’ve learned that life is not measured by the number of breaths you take, but by the number of moments that take your breath away. You’ve fought for your life several times. There were times you didn’t think you would win. There were times you shouldn’t have won, but by God’s will, you pulled through. Let’s just say the limits of your body have been tested.
The journey has been challenging, but it hasn’t all been bad. There has been some amazing good come out of this as well. You’d learn who really has your back; who’s really going to be there for you at 2AM texting with you during a flare, who’s going to come over and hang out with you and watch movies because you can’t move from bed, who’s going to rescue you in the middle of winter when your wheelchair gets stuck in slush in the middle of Forbes Avenue and the list goes on.
You’ve made it through five years of battling the fiery monster kid. Hopefully in the next five years they will find a cure, but if they don’t, know that you will crush the next five years too.
Keep your chin up and charge the mountain!