M.E.G.'s Confessional

My Mystery Disease is Pompe

How do you do it?

on April 10, 2012

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

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10 responses to “How do you do it?

  1. altatwood says:

    That is so sweet and inspiring, Monique! I am so sorry you lost Jaimie but I am sure she is watching over you and continuing to support you through your fight. And thank YOU for being such an inspiration to me and others. I will fight just like you and just like Jaimie! xoxo

    • purplelv93 says:

      I know you will fight! We share so much, but fighting for our health was not something I was hoping to our commonalities. As always: Keep Fighting!

  2. Lisa Hall says:

    My dear cousin! You are such an inspiration to everyone, including me. Happy birthday Jaimie!

    • purplelv93 says:

      Thanks cousin! But really, I’m just the same stubborn brat I always have been. I just found a good use for it!

  3. Mic Anderson says:

    Happy Birthday Jaimie, while I will never know you in this world, your legacy lives on though my dear friend!

  4. Katie says:

    Hi Monique! To say that “God moves in mysterious ways” would be an understatement! He knows exactly what He is doing when He places special people in our lives…so that we can be a blessing to them, as you certainly were to Jamie, and in the same respect, she was quite a blessing to you! You helped through difficult times, and she is with you in spirit, even now, still helping you. As for the fight with Pompe, I make the most of each day as well…I had some fine teachers of perseverance…my Dad, and his mother….both had severe health issues, but they never gave up…and, just like you, neither will I. Take care! – Katie

    • purplelv93 says:

      Awww, thank you Katie. If nothing else we learn to appreciate each day. It kind of drives me nuts when I hear people just wishing their lives away. As in I can’t wait until next month or next weekend and I wish the time would just fly. You never know what can happen between now and then so why not enjoy the now?

  5. Amber says:

    I am 22 and was diagnosed @ 19. I am pretty new to this and have not started treatment YET :). like u I remain positive and love my life. Its nice to know more ppl like that. My family is pretty depressing (thank God I am not; so I don’t talk much about it. Thanks for letting me know I am not the only 1. My bro and I make jokes about it. (Putting Nos and spinners on my wheel chair, bedazzle it, and u of course is more athletic now so I we joke that I am smarter and older and he is athletic and taller) my life is amazing even with Pompe. I think it just makes me all that more unique.

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