Sunday, December 18, 2011

T'was the Day After My 25th Birthday

My birthday was on December 3rd, so it has been more than a few days since, but for the purposes of this post, that's insignificant.  I need to be more productive this year.  I feel like a greater part of the past two years since graduating from college have been a bit of a waste.  I need to get out of my parent's house so I can exercise my free will and express opinions without being trampled on.  Today, my dad totally convinced me to go out with him and to do errands which involved listening to guy who makes marmalade out of tomatoes, yup....:/.  Right now, my life is seriously lame.  I have great friends who are basically family, so that is not the problem.  The problem lies in that two night ago at my parent's Christmas party, I responded with "I'm a hostage" to the question, "What are you doing these days?"

The past year included two surgeries, Baclofen pump revision and G-tube.  I also had to move virtually all of my medical care from one hospital to another and despite all of the headaches, the move has been well worth it.  There are many doctors out there, some are good, but only a few are great!  Some only help maintain your baseline, but others actually try to improve it.  Some just say, "I don't know" to every question, others try to challenge that and look for a cause.

Perhaps my most important lesson this year was that everyday is a gift.  Sure, we've all heard this one in some way, but have you ever really thought about it.  This July, a little friend of mine Eithene, passed away from Mitochondrial Disease.

Me and Eithene
Loosing someone you care deeply about is very difficult hard, but when that person is lost to the same disease you have, it is very hard to not take pause and live life differently from that moment on.  I will never forget the weekend she passed.  I have mourned before, but never so deeply.  Mitochondrial Disease has no compassion, so while I knew of others who lost their lives, Eithene was the first I had ever known personally.  This is when it began to hit me.  Eithene and I both have mito, but we are on very different paths.

My Mito Sisters: Chelsea, myself, Sarah and Stefani.
This year has been difficult for my mito sisters.  One of us had a 108 fever in October, another has faced one issue after the other, and yet a different sister had a PICC placed.  Standing by my sisters during difficult times has me wondering, why am I here?  What do I have to offer?  Clearly, there must be a reason why with all of the "could bes", I'm still here and doing well.

Oh, and for all who are wondering about my Bucket List, it's still there.
  1. Touch an elephant
  2. Sing Handel's Messiah in a chorus
  3. Attend a taping of Saturday Night Live (New York City)
  4. Go to the Kentucky Derby 
  5. Give life (donate blood, bone marrow, have a baby)
  6. Go to Ireland
  7. Visit Beethoven's grave (Vienna)
  8. Attend a live performance of Beethoven's Ninth Symphony, preferably in Symphony Hall (5/24/11 in Philadelphia with the Philadelphia Orchestra.)
  9. Go to the hairdresser and give them free reign 
  10. Go to a fancy occasion without my feet hurting
  11. Get a job as a Child Life Specialist
  12. Go to the World Series, preferably, in Boston ;).
  13. Attend a performance of The Holiday Pops in Boston (12/20/10)
  14. Go on a cruise
  15. Serve as an extra in a movie
  16. Read two books a month for a year
  17. Complete a 5k Walk
  18. Go horseback riding, again
  19. Take ballroom dance lessons
  20. Perform Moonlight Sonata, again
  21. Swim in the world's largest swimming pool (Chile)
  22. Visit a rain forest 
  23. Go to Australia
  24. Go rock climbing, again
  25. Go skiing, again
  26. Ride on the Orient Express (train)
  27. Sleep in an overnight train
  28. Ride The London Eye, again
  29. Name a star
  30. Visit The Four Corners (UT, CO, AZ & NM)
  31. Take a shower, or at least wash my hair in the rain
  32. Reach 20 followers on my blog
  33. Be recognized for my blog
  34. Distribute Halloween candy (yes, I have never done this)
  35. Watch the pony swim from Assateague Island to Chincoteague Island
  36. Visit Hollywood Walk of Fame
  37. Attend a live performance of Mahler's 8th, Symphony of a Thousand
  38. Be involved in a clinical trial
  39. Try a carmel apple
  40. Put a star atop a Christmas tree
For those paying attention, #39 and #40 are new.  Better yet, I did them last week in Boston!!  Even better, each was done with a sister as a witness!!  

Stefani's Tree
I ate a carmel apple with Sarah at MIT, but alas I don't have a picture.  I think this means I need to do it again so I can obtain proof.  

1 comment:

  1. I admit I went through same stage of "What are you doing these days?" from 2004 to spring of 2006 when I finally start volunteering for genealogical society in Boston. As u can imagine, it was really hard for me. For long time, I tends to have anxiety attacks every time before I leave to visit family because I was afraid they would have high expectation towards me.


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