managing life threatening diseases

How do you do it?

I’m often asked how I deal with Pompe so well, where I draw the strength to go on fighting day after day. Well, first off, the alternative is to just sit at home complaining, feeling sorry for myself, and waiting for Pompe to kill me, but that is just not how I roll. The simple answer is that I’m stubborn and I’m a fighter. I refuse to let some stupid mutated genes ruin my life. It does make for an albeit difficult, but interesting life.

Some people just deal with adversity better than others, it is a personality trait. I also draw inspiration from those around me, even those who are no longer here.

When I was in elementary school one of my best friends was diagnosed with a brain tumor. She went through surgeries, chemotherapy, and radiation treatments. The treatments made her very sick and she lost all of her hair. I watched as other kids shied away from her or stared at her, but through it all she remained positive and outgoing. She appreciated the days when she felt good and would want to go out and seize the day. Even if she was checked into the hospital for a multi-day treatment session she would ask her doctor for a “day pass” so we could go to the movies or Disneyland or shopping. It was like she understood without equivocation at 9 years old how important it was to embrace life and enjoy yourself when you could.

I learned how to be a Pompe Warrior from Jaimie. The example she set as a young child continues to inspire me to never give up fighting and never give up hope, to enjoy life and live it to the fullest. She may have been thankful that I remained her friend, that I wasn’t one of the ones scared off by her cancer, but honestly I think I am the one who benefited the most from our friendship.

So how do I do it? I get by with a little help from my friends…..and family too of course!

Today is her birthday. Happy Birthday Jaimie. You are greatly missed and continue to inspire the lives you touched.

“Wouldn’t it be great to be able to fly, over the rainbow and beyond the sky?” -from one of Jaimie’s many poems