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.  

       

Beethoven's Ninth Symphony

The end of last month was a lot of fun.  Not only did I attend my third Child Life conference in a row, but was also able to cross something off my Bucket List; #8.  Some may view the fact I have such a list as morbid, but I look at it as motivation.  I do have Mitochondrial Disease, but no to worry, I'm not going anywhere soon.  I also could be hit by a bus on the way to the Allergist today so I want to make sure I do or at least aim for many of the things on this list.  While it currently has 38 items on it, there is no rule anywhere that says I cannot add to it as I see fit.  In fact, the last one just came to me a few seconds ago.

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

On Tuesday, May 24th, I had an appointment at CHOP and after that we met my dad at The Ritz where we would be staying that night. (The Ritz isn't our normal.  However, because my dad has so many travel points from work it was better to use those than traditional money.)  We rarely stay in hotels in cities that are only an hour and a half from home, but that night we had to since my dad was driving from Pittsburgh which is six hours west and I would be leaving for my conference the next morning, or so we thought (different story).  

After we got changed in the hotel for our night out, we ate dinner at an interesting restaurant that had Thai, American and Japanese cuisine.  There is a specific term, but I forget what that is.  We then walked to The Kimmel Center for the Performing Arts which houses The Verizon Center, home to The Philadelphia Orchestra.  

(Kimmel Center from Broad St., aka Avenue of the Arts)

(Outside Verizon Hall within The Kimmel Center)

The performance itself was two symphonies separated by an intermission.  The first symphony was Symphony of the Psalms by Igor Stravinsky.  This symphony was commissioned (written for) the Boston Symphony Orchestra in 1930 to celebrate their 50th anniversary.  Unlike most symphonies, this was composed in three movements.  I studied this composition in more detail as a Music minor at Simmons College.  During one of my Music classes I attended two BSO performances at Symphony Hall in Boston; same place I attended the Boston Pops in December.     

After a brief intermission, the true magic of the night began.  I don't remember when I first heard Beethoven, never mind fell in love with his work.  I can tell you that nearly everyone has heard the very basic elements of his most famous work; The Ode to Joy.  I have even heard it used with television commercials.  I cannot describe every note of this glorious, adrenaline pumping piece of music, you'll have to do that yourself ;).  I highly recommend this recording, performed by The Philadelphia Orchestra, led by the great Riccardo Muti who is not only my favorite ;), but transformed the orchestra as a whole.  Muti is my favorite because he was with the orchestra when I was young and therefore had a strong role in my love of symphonic music.  (Don't worry, you can listen to Beethoven's Ninth on iTunes with their small snapshots, but that's nothing compared to having the whole thing and turning up the speakers).  

I would describe Beethoven's Ninth to an extent, but that could easily turn into a major undertaking, not only because this is easily my favorite piece of music ever written, yes ever...but also because my perfectionistic self would take over and my attempt at a "brief" description could easily turn into something comparable to a dissertation, complete with references.    

    

  

The interior is shaped like a cello allowing for optimal acoustics and for all of you who have ever sung in a chorus/choir, see those red seats below the organ, yes, you guessed it.  Unlike most situations, in Philadelphia, the choir gets cushioned seats; not risers.  So singers get to sit, yes, sit when appropriate, not stand for what seems like eternity.      

 I do have my own pictures, but those are on my parent's camera.  I will add those when I get them.

Holiday Pops!!

Last week, I crossed #13 off my List, Attend a performance of the Holiday Pops in Boston.  I was really hoping to attend it with Chelsea and Keith, two of my good friends.  I met Chelsea through other friends with Mitochondrial Disease.  Keith is her husband.  Despite having to go on my own, the concert itself was a lot of fun!  Shaquille O'Neal made his conducting debut and the final of the three pieces he conducted was the best and hands down, the most unexpected, We Are the Champions, by Queen.  The Boston Globe wrote a brief article about the cameo.  I typed "shaq conducting" into Google and I got over a full page of results.  NPR even reported on the event.  While I was disappointed my friends couldn't join me, I was proud to be part of this unprecedented performance in Boston Pops history.  

Keith Lockhart (Pops conductor) and Shaq on the conductor's box.

(Photo found through Google Images.)

Shaq conducting

(Photo found through Google Images)

While Shaq was the spectacle for many, I simply took pleasure in being in Symphony Hall home of the Boston Symphony Orchestra and Boston Pops, once again.  I think I have been about five times, two were for one of my music courses I took as part of my music minor at Simmons College, also in Boston.  I attended the symphony for the first time in Philadelphia when I was about 6 years old.  Boston is known world wide for classical music and music education.  Both the Boston Symphony Orchestra and Boston Pops have pieces written specifically for them.  They have also performed many world and national premiers throughout the years.  Tanglewood, Massachusetts is the summer home of the orchestra and the Tanglewood Festival Chorus is its namesake, the official chorus of the BSO and Boston Pops.  The best part for me was the sing along because I (and the rest of the audience sang with the chorus, SO cool!!  I will certainly remember this night for a long  time to come.  

I did take my own pictures, but I will post them later.  I found and posted these because I figured Google likely had better pictures.  

T'was the Day after my 24th Birthday...

Very recently, I was looking online into ways to celebrate my 24th and I stumbled across a Bucket List of sorts that someone had set up to accomplish within the year.  I have been giving my own list some thought, but not sure what to call it since I don't want to jinx anything, never mind feeling too young to call it a Bucket List.  I also felt it necessary to start one since some mito friends close to me have been in the hospital recently.   Christmas and New Year's are coming soon and they always have sentimental value to me.

My list so far:

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