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You think your life is hard?
So I watched this program on TLC last night where I could not stop crying. It's about this man by the name of Jonny Kennedy who was 36 and suffered from a genetic disorder called dystrophic epidermolysis bullosa, or EB. It's a condition where the skin is very fragile and sensitive and your skin is constantly repairing itself. You pretty much end up with scars all over the body and you don't look "normal" anymore. For Jonny, it was so bad that it got to the point where he had no more fingers or toes because the skin had grown over them. He was told he had cancer and only had 1 year to live. He did a documentary on his last 3 months of life.
After you look past all of his physical components, you find this funny, charming person who has learned to deal with his condition and has accepted and come to terms with his death. I think I cried more about how happy and funny he was most of the time knowing what he's been through, what he looks like and what he will face in his future.
Imagine going through 36 years of your life in bandages and not being able to play as a kid. Imagine when changing bandages, it's like peeling off a layer of your skin since the bandages stick your open sores. Jonny's back was completely exposed so when he's take off his shirt and bandages, everything would stick. Watching that really got me. He has had to go through that his entire life. He hasn't been without pain his entire life.
The worst part is when he goes to buy his coffin and has it custom decorated, chosing his grave site and asking people to speak at his funeral. Imagine going and buying your grave knowing you'll be in it soon?
His entire philosophy on life is amazing. He said that he was put here on earth to learn a lesson. He said that if your lesson for this life had not been learned, you will be sent back until the lesson is learned. That is the exact way my mom and I think. I believe that life is a lesson. You go through challenges throughout your life to learn something good and know how to deal with the situations you are put in. I really hope that I learn my lesson in this life in order to move on to become a better person in my next life. I need to learn to not be selfish and be an amazing person more like Jonny.
When I watch people's lives and step out of my bubble, I really feel guilty for getting upset over little things, saying my life could be better, and not being at peace with everyone. I do have to say I've gotten a lot better as I've gotten older and have realized that people are much worse off then I am and I don't complain about my life and how "horrible" it is and how much I am "bored". I rarely complain anymore.
I really wish everyone would be able to step out and take a look at other people's lives and realize that what they have is amazing. We'd all be compassionate and better towards everyone.
Jonny ended up dying after he visited the Prime Minister to raise funds for his organization called DebRA. It's a bitter sweet thing since he was not suffering anymore but yet this charming, amazing person is gone.
For those of you who actually read all of this, I really hope you'd watch the documentary. It's called "The Boy Whose Skin Fell Off". Then you all will realize that your lives are amazing and you shouldn't waste it with negativity, sadness and complaints because your lives could be a lot worse, painful and challenging.
If you're curious, Jonny's organization is at the following website: http://www.debra.org/
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heartsnbones) wrote,
