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.

10th Anniversary

This Father’s Day 10 years ago I had my second stroke.  Yes, second.  The first was when I was eighteen months old and as a result, don’t remember it.

My symptoms actually began the night before when my family and I were watching Office Space.  My vision was quite blurry, but not overly so that I couldn’t see anything.  I wasn’t quite sure what was wrong so I tested myself a bit and walked to the kitchen for something to drink.  I could walk and use my major muscles so I wasn’t overly worried.

The movie continued and ended without incident.  (Apart from being happy the movie was over because I hated it.)

I didn’t sleep well at all that night.  My belly was not pleased for some reason and I think I was just awake because I wasn’t sure what was happening.  At no point did I wake up my parents.

Sunday morning came and my dad came in to tell me they were leaving for their run, but would return at around 11.

I was sort of sleeping.  We’ve all been there, looking and acting asleep hoping that by fooling others, you’re fooling yourself.   I decided it was time to get up and figure out if I was better, worse, or the same since the night before.  I recall being awake, but feeling only half with it.  As though time was on slow motion.  I thought perhaps a cool shower would work.  I turned on the water and got it, making sure to get my hair wet.  That did nothing.  I hastily dried myself off, put my PJs back on and laid across my parents bed.  At this point, I still had no idea what was happening, but felt doing anything that was not absolutely necessary would not do me well in my current state.  This is why I didn’t towel dry my hair, get dressed or eat breakfast.

My parents returned home and the first to find me was my dad.  Upon entering his bedroom, the first thing he saw were my feet and as usual, he tickled them.  No response.  I didn’t squirm, try to kick him, giggle or anything.  I wanted to, but felt so detached.  Shit, I thought, this can’t be good.  My dad walked around to where my head was.  He had just returned from a run and normally I would have scrunched my nose, but that didn’t fly either.  Dad tried to interact with me but soon found I couldn’t talk, my face was asymmetrical and here’s the best part…I was also drooling because I couldn’t swallow.  Eeeeew!!  Gross!!  Only babies drool…I’m 14, this is not cool!  Mom was in the shower.  Dad went in and told her something was very wrong, but mom, of all things, said, “but I want to go to Starbucks and walk around town.”  Hello!!!  I can still hear, I thought you were a nurse, yeah like a “medical professional”.

After practically yelling at my mom (go dad) we were getting ready to go to the hospital; namely The Children’s Hospital of Philadelphia.  For whatever reason, my mom made me get dressed to go to the hospital.  Nowadays, I go in my PJs because 1) they are more comfortable and 2) I like to avoid the HUGE hospital gowns whenever possible.  To this day, I remember exactly what I wore that Sunday in June.  During the hour and a half car ride to Philly, my dad got on the phone and eventually was able to talk with one of the Neurology fellows.  What is Neurology?  While I had no idea what the word meant, something told me it wasn’t exactly something you wanted to be familiar with.  The fellow asked my mom to direct me to follow her finger with my eyes.  I couldn’t.  I really, really wanted to, but I could.  Shit, I thought again.  Now I am really screwed.  I was semi-familiar with this “follow my finger” test since my pediatrician seemed rather fond of it, not sure why.  Previously, I would just do as she asked without thought as to why I had to do such a menial task.  However, now that I couldn’t do it, I grew more frustrated and the task I had previously done flawlessly, now seemed to have merit.

First my parents thought we should go to the Hospital of the University of Pennsylvania’s ER, since I was a teenager, but the security guard told them no I should go to Children’s (right next door) since I was not yet 21.  Nothing had changed when we arrived at CHOP.  I was the same and could still walk.  I looked around at the others waiting to be seen and to my shock seemed to blend in.  From here on I remember everything; from what the room where my vitals were first taken, to the color and location of the room I was in while in the ER.  I had a CT shortly after getting to the ER to make sure I wasn’t bleeding, had a clot or tumor in my brain.  The Radiology tech who was in the room was a woman with blond hair.  I remember crying a bit in the machine and she was talking to me, assuring me everything would be OK.  I repeated those in my head over and over.  I had my IV in the back of my left hand near my pinkie; it was blue.  Since “real food” was out of the question since I couldn’t swallow, my dad got me a chocolate milkshake from the McDonald’s in the hospital thinking perhaps the milkshake would melt in my mouth and then slowly go to my stomach.  Not so fast since the act of sucking on the straw was not successful.  Mom then tried to spoon feed it, but that too didn’t work so well.  Even though I couldn’t ingest the milkshake, I refused to let them have it or toss it because it was still mine.

After the ER, I was admitted to the PICU (Pediatric Intensive Care Unit).  I spent two days there and three days on what was The Adolescent Unit, this unit doesn’t exist anymore  .  During my admission, I got my braces off (YES!!!) for an MRI since the mouth lines up with the base of the brain and can cause artifact on the scan.  One of the labs I remember being drawn was for Lyme.  I was seen by Cardiology and I remember this quite well since I was sort of confused as to why would my heart render me unable to swallow, speak or smile.  The first meal I had was Fruit Loops with grape juice on the side.  Even though I received Speech Therapy, most of what I did say was unintelligible so I didn’t talk much due to frustration.

One day, however, one of the doctors asked me to follow their finger with my eyes, but the only problem was I couldn’t see it since I didn’t have my glasses on.  The doctor had woken me up and last I remember, my dad had taken them and placed them in his breast pocket.  I then asked, clear as a bell, “Where are my glasses?”  Needless to say, my mother was so shocked she missed out on what I said.  Thank god someone else was in the room because I didn’t want to try again for fear I couldn’t.  So once mom put my glasses on I gave it my best shot to pass that pesky “follow my finger” test.  My mom was wearing a black turtleneck that day.

The doctors and CHOP were very puzzled by my symptoms and medical history.  Strokes stereotypically happen to old people, yes there are always exceptions, but for a 14 year-old to have two for no rhyme or reason simply did not make sense.  Neither was the fact that nothing ever came up on my CTs or MRIs.  Most strokes are caused by clots or lack of oxygen, unless they are metabolic in nature.  That year, I did not improve as much as would be expected in someone my age who has had a stroke.  The young are more resilient and can recover from brain injury such as a stroke more quickly because their brains are not yet fully developed.  The next year, 2002, I was diagnosed with Complex I Mitochondrial Disease by fresh muscle biopsy in Atlanta.

Slow, Yet Steady

I am still working on Cohen Children's (NY) application packet.  I thought I would have sent this by now, but alas, I haven't.  I could have sworn I had at least two copies of my official transcript because I had to send one to Connecticut Children's.  After thoroughly clearing off my desk going through everything, including my filing cabinets, my transcript could not be found.  I typed up a letter to the Office of the Registrar complete with all the important information and put it in the mail.  Yes, I could go and pick it up in person, but I might forget, so the best thing to do was just mail out the request.  Should be here soon.  Once I get my transcript from Simmons and my sealed recommendation letter, it should be ready to go once I finish the cover letter and read over my essay, making sure it fits their needs and word limit of approximately 300.

I tried calling the acting director of Child Life at Boston Medical Center once again, but it seems there are issues with that number.  After a few minutes of poking around online, I found a number for pediatrics and left a message.  Hopefully someone will be able to tell me if they are offering a summer Child Life internship or practicum.  

I am still working on the practicum application for Children's Hospital at Dartmouth, in NH.  Like Connecticut Children's, CHaD requires paragraph length answers to ten questions.  I have a draft of three questions I haven't encountered before and some are basically the same as Connecticut Children's questions.  CHaD also requires a CPR Certification which I will obtain on February 19th through an Adult, Child and Infant CPR class given through the Red Cross.

I left a voicemail for the administrative assistant to the Psychology department at Simmons College since the professor I'm seeking a recommendation letter from doesn't have a voicemail.  Hopefully, I will hear from someone soon so I can make some real progress with these applications.  

Yale only has a practicum during the Fall and Spring.  Montefiore only opens their internship program to independent students during the summer so if I apply and am accepted, that will mean a move to NYC since internships are full-time.  I may not apply to this program.
 

I think the time has come for me to start working on the applications for CHOP (my hospital), St. Christopher's (both in Philly), and A I duPont in Delaware.  

General Update and Maine Tomorrow

Today is August first which means the lease to my very first apartment ends in 30 days.  I received two leads from a wonderful realtor who finds roommates AND apartments.  The first was too far away, while the second had a weird layout and I didn't get a good vibe from it.  My expectations are much lower this year since time is not on my side and my budget is much lower.  I was going to meet with someone I found on Roommates.com today, but she had to work so we will have to meet when I return from my vacation.

Things have been slowly progressing on the Baclofen pump implantation front.  In Philly, we need to schedule the intake appointment at Jefferson (neurosurg, anesthesia, and pre-op tests).  I need to do the same in Boston at the Brigham, but I am rather hesitant since after multiple messages, I have yet to hear from Dr. L at Spaulding to get the OK to proceed with implantation surgery.

I have made progress in the Child Life practicum/internship department!  So far I have applications for and am planning to apply to the practicum at Yale-New Haven Children's Hospital, Alfred I duPont Children's Hospital (in Delaware), Children's Hospital of Philadelphia, and St. Christopher's Hospital for Children (in Philly).  I also have the internship applications for Bristol-Meyers Squibb Children's Hospital (in NJ) and Hershey Medical Center (in PA).  I am slowly and steadily working on these applications as I contact other hospitals for applications.

I leave for Maine tomorrow.  My mom and dad spent the night here in my apartment and I will sleep on my futon.  I have been going to Maine for about as long as I can remember and you can bet I will bring my laptop along so I can blog while I am there.

Arizona Tomorrow...

Today was spent mostly lying around the house with a rather large knot in my intestines. Tomorrow my mom and I are flying to Arizona for the Child Life Conference and for whatever reason, I am nervous. I attended the conference last year when it was held in Boston and had a great time, but I guess perhaps it is the circumstances surrounding this conference that make it more important than it was last year. This year, I hope to get my name around and distribute some resumes. Depending upon who I meet and come in contact with could, in essence. define my plans for next year.

My mother called a friend of hers, which led her to call and speak with the Child Life Director at St. Christopher's Hospital for Children in Philadelphia. After a brief conversation with the director about my educational background, the director decided a good next step for me would be a practicum, which as far as I understood it, between a volunteer and an intern. Unfortunately, practicum hours not count towards certification, only internship hours count. Eh, I'm not complaining as long as I am stepping foreword and in the right direction. My mother and I will meet in person with the Child Life Director at St. Chris's next Tuesday. In Boston, I have the CLC's Directory of Child Life Programs which is essentially the bible if you are looking for practicums or internships and are not currently involved with an educational program for Child Life. The next deadline for practicum applications is Sept 5th for January start. I will likely at the very least apply to the child life practicum program at St. Chris's and CHOP (The Children's Hospital of Philadelphia). As far as I know, Children's Hospital Boston (CHB), where I have volunteered for nearly five years does not offer internships/practicums to those not in an educational program, but I will learn soon enough.

Tonight, I went to my best friend Allie's house to watch Glee with a bunch of friends I went to elementary and middle school with. It was so nice to hangout with them because it seems like no matter how much time has passed between when we last saw each other it is really easy to pick up right where we left off :). About four of them, Allie included, will be moving to Boulder CO in August and I am really considering joing them, provided I can find some sort of work/child life related activity for me to do out there. If I have success in that realm, I will then need to investigate the medical care and the feasibility of obtaining it out there since I will obviously need to uproot 90% of my care should I move. Oh, the complications of having something chronic...

I am feeling the winds of change... I just wish they were blowing me more strongly up north back to Boston instead of swirling around my home town... Only time can tell....