John Gardner & John Ferrarone
at archery! MDA camp
I've mentioned the Muscular Dystrophy Camp I volunteered at ("A Special Place for Special Kids") a few times now. It's not only one of my favorite places, but it's also where I first met my boyfriend John (click here in case you missed the full story). John was my friend and fellow counselor for several summers and he was always paired up with a camper named Jon Gardner. Over the years, Jon has become very important to both John and me.
John & me at the
annual camp dance
Whenever I hear Jon's name, I immediately recall him smiling laughing with his friends and showing great kindness toward younger campers. He often said that, in his eyes, MDA camp "was the best place in the world."He started attending as a little boy, remained a camper until age 21 (when he had to "graduate") and now, even with profound physical obstacles in his way, he still volunteers every summer. I remember Jon's favorite place to hang out at camp being "Radio" - an empty barn with music, ping pong, chairs to hang out on, a water park to play around in, and other games. He loved to select the music for people to rock out to and simply took such joy in the joy of others.
John with counselors
Kristi and Kristen
(being a ladies' man as usual)
Undoubtedly, Jon represents everything good about MDA camp and people in general. Despite living with Duchenne Muscular Dystrophy - a progressive and life-threatening disease - he always manages to stay his kind, optimistic and special self. He's always thinking of others and, even when he started coming to camp with a breathing tube, that smile never left his face. There are few people in this world who can say they soak up every bit of their life, but John certainly can. The difference is he actively chooses to hang out on the bright side every day. I've learned so much from him and know you'll enjoy getting to know him more by reading his answers. Jon, thank you for being my first Spotlight and for being our perpetual bright side.
What is the year you were first diagnosed? How old were you ? Well I was 5 years old, so it was either 1988 or 1989.
What would you tell someone who has been newly diagnosed with your condition
and/or a chronic illness in general?
It would be very difficult to figure out what to say to someone diagnosed with Duchenne Muscular Dystrophy. This is because everyone is diagnosed at a very young age (likely between 2 and 6). I know at that age I wasn't even sure of what I had. All I knew was that I was slowing down, falling down a lot, my legs were getting tired easier, I couldn't run as fast, and I couldn't keep up with the other kids. I was experiencing what was happening to me, but I didn't necessarily understand exactly. Going to MDA summer camp taught me a lot more because I knew many people were like me and were going through what I was. I had seen what someday I'd become. I'd seen the entire disease process right in front of my eyes by seeing the other campers of all ages. I feel that the only person who could say something to help me through would have been and older person with Duchenne. I do know whatever someone would tell me...what I'd seen and experienced would always have a much greater impact on me, deep down in my soul. I would tell the child to be strong inside your heart, don't let anyone make you feel worthless, you will make it through as long as you have a positive attitude and always smile no matter how hard things get. Don't be afraid to cry, but be strong whenever you can. I promise someday you will be rewarded by your strength and courage, someday you will run again.
Please explain a bit about how your condition affects you (for example: what are the symptoms and what is the hardest part to cope with? Has the disease changed over time? etc.)
There is major weakness in every part of the body, it can be hard to breathe at times, I can barely move, it feels like you're being weighed down so much. No matter how hard you try to lift or move certain body parts, they wont budge. Hardest to cope with is not eating normal food, delicious food I used to be able to eat like lobster, shrimp, clams, KFC, pizza hut, taco bell, Chinese food, Italian, cake, strawberries, etc. Hey, I can still eat ice cream - Yum! Other hard things are not being able to barely do anything on my own, independently, and having no control. Yes this disease changes with time a lot, yet slowly. The entire body gets weaker and weaker, and the weaker I get, the less I can move. Different weaknesses come with different effects on the body.
Jon and his whole bunk of friends
MDA camp "back in the day"
What are 3 things you couldn't live without?
Jon at his high school graduation
God, Love, & Life
What are you most proud of?How I've coped with this disease, stayed positive through it all, even with all that I've lost. Also, graduating high school.
Where do you get your strength?God and from my heart and soul. The love of life, the sun.
If you could send one message to medical professionals around the world, what would it be? Humanity, kindness, love - do not remove your real emotions that make you a human being. Do not be afraid to feel for a patient even if the patient dies or will die.If you are told not to cry or to be numb with your feelings, when you do this you lose your humanity. Death is a way of life, it makes it hard for a patient that will die someday, but it will also make you a stronger person inside. It will make it so you are not afraid of death, make you accept death as a natural part of life. Research Duchenne Muscular Dystrophy. We can be fragile. We can seem fine one moment and drastically turn for the worst the next moment, we need help with everything. Listen. Do not think you know it all because you don't. Sometime the patient knows far more than you think.
I'm living in New York, studying social work, and making time to be Maya: a daughter, a sister, a fiance, a friend, a writer, an animal lover and someone coping with 2 medical conditions (Spondylitis & Fibromyalgia). Every day I'm learning to live and love not despite chronic illness, but because of it. I treasure my readers, so please comment or write to me at firstname.lastname@example.org. Thanks for stopping by!