Sunday, July 1, 2012

Descriptive Search: My Dream App

In the name of research blog posts, writing essays, or just finding interesting information for myself, I often conduct very unusual Google searches. And despite extensive use of "", +, -, and advanced search options,  I am left paging through hundreds of hits that do not feature the type of content that I want. For community service projects that I participate in, I am often searching for person stories of those affected by bone marrow failure diseases, as I was as a child, but I end up with every hospital int he country's description of the diseases. For one paper in college, I researched the feud between Percival Lowell and the lead astronomer at Harvard in the early 1900s, but my Google search returned every academic article on astronomy in that era, because they were contemporaries.
In my ideal world, there would be a tool that would allow me to describe the type of sources I am looking for, and would generate corresponding results. Similarly to the way that Siri can search your immediate area to find restaurants that are still open and serve the exact dish you're looking for, this search engine would be able to find the personal blogs and updates of families dealing with serious illness, or the actual insults that early 20th century astronomers hurled at each other from the pages of scientific journals. I hope that one day I will be able to type/tell my search engine "I need writings from Percival Lowell insulting the location of the University of Chicago's observatory" and I will be given the editorial Lowell wrote doing that very thing. Or, I might ask for "the blogs of young adults who have survived bone marrow transplants" and be taken to a selection of potential new connections. Given the major advances in technology that have made Siri and all that the IPhone 4 can do possible, I have high hopes that descriptive search might be available in the not-too-distant future. This scholarship is sponsored by ATTSavings.com

Saturday, June 30, 2012

America's Best Blogging: Who Has Your Vote?

          This November, I will be voting for President Barack Obama. There are a lot of reasons for this. I agree with many of his policies and feel that he has done a good job of handling the many, varied, and considerable problems our country faces.

          But being only 21, and in college, his policies on public education, defense, and energy don't affect me that much. There is one intensely personal reason that I will be voting for Obama come November, and it can be stated in three letters: ACA.

          The Affordable Care Act is the Obama Administration's landmark health insurance and care reform law. Health care reform has a long, difficult, and fascinating history in the United States (anyone interested in this topic should read Paul Starr's incredible book, Remedy and Reaction: The Peculiar American Struggle over Health Care Reform). Due to wage limits imposed during World War II, companies began offering benefits packages to employees, which started the US down the road to the private, employer-sponsored system we have today. This system works well for anyone who has a full-time job with a large corporation, and no major health concerns. It doesn't work for the working poor, the disabled, the self-employed or those who work for small companies, or anyone who is very sick. As a result, millions of Americans are without health insurance. However, a plurality of monied Americans have health care, so there was little political will for reform.

          President Obama and his administration moved forward with the ACA despite the lack of political will, and despite heavy opposition from many members of Congress, and some members of the American public. They fought incorrect information and partisan fights to pass the largest overhaul of the health care system in American history.

           Several key provisions of the bill include: allowing young people to stay on their parent's health insurance until they are 26 years old, and banning insurers from putting a lifetime cap on care or denying coverage to those with preexisting conditions.

          And that's where I--and my vote for Obama--come in. President Obama has vowed to stand behind this law, and his administration saw it through a tumultuous challenge in the Supreme Court. Just this week, the Court upheld the law, and its provisions will continue to come into effect in future years. Mitt Romney has vowed to repeal the law. And despite the fact that I am an ostensibly healthy 21-year-old, I have an incredibly personal stake in the ACA's existence.

Me!



          In January of 1996, when I was four, I was diagnosed with a very rare bone marrow failure syndrome called aplastic anemia. Bone marrow produces blood cells, and in aplastic anemia, for reasons that are still unknown, it fails to produce them in sufficient numbers. I almost bled to death from a nosebleed because I could not clot properly, I had many infections that could have become life-threatening because I did not have enough white blood cells to fight them off, and I was pale, cold and tired due to lack of red blood cells to circulate oxygen. 

What normal bone marrow looks
like (from Harvard Proteomic Engineering)
What my bone marrow looked like (from
  Journal of Pathology)



          After exhausting the various drug therapies available, and spending more than a year dependent on weekly blood transfusions to live, I received a bone marrow transplant in June 2001. After a year of recovery, I was pronounced cured. 
In the hospital for transplant
A year after transplant, at summer camp!



            But the bone marrow transplant required me to receive extremely high doses of chemotherapy, and the variety of medications I was on before, during, and after my transplant can have long-term side effects. Bone marrow transplant for aplastic anemia is a relatively new procedure, all things considered, the first being performed in 1971. So, while my life expectancy is now that of a normal person's, it is not well known what long-term effects I will face.

          To that end, I make yearly trips to a specialized clinic in New York City at the Memorial Sloan-Kettering Cancer Center, where I had my transplant. This clinic is designed to follow adults who had cancer or hematological diseases as children for the rest of their lives, to deal with the specialized needs they have.
Every year, I have blood work done to ensure that my bone marrow is still healthy, I am checked for hormone levels and thyroid function. Every  few years, I received a bone density scan, because I am at risk for early osteoporosis. My heart and lungs are monitored, and I see an outside opthamologist to monitor the cataracts I developed as a result of medications I received. So far, they are small enough to not affect my vision, and they will hopefully stay that way. 

          As you might imagine, none of this is inexpensive. I am incredibly fortunate that my parents have had excellent health insurance throughout my life. And, thanks to the ACA, I will be able to continue to have this insurance until I am 26. In order to afford all the care that I need, I absolutely have to have health insurance. 
If the ACA is repealed, I will need to find health insurance as soon as I get out of college. This will mean putting many of my dreams on the back burner: graduate school, work for a non profit, teaching in a foreign country. I will get a job with a large corporation that offers health insurance, and I will then have to hope that the company agrees to take me on, doesn't charge premiums that I cannot afford as a new member of the workforce, and does not put a life time cap on my insurance or deny me aspects of my treatment.
I did not ask to get aplastic anemia. Nothing I or my parents did caused this. It happened, and we dealt with it in the only way we could. The treatment that kept me alive has made my medical care more complicated, but receiving this care could be a matter of life and death. Before there was long-term care, survivors sometimes died or were disabled by preventable conditions resulting from their treatment.

          This issue has been in the spotlight recently with Good Morning America anchor Robin Robert's announcement that she has Myelodysplasia as a result of her treatment for breast cancer. She has access to excellent care, and is slated to undergo a bone marrow transplant. She has an excellent prognosis because she has health insurance. All I want is the same opportunity to take care of myself in the ways I need to in order to stay healthy. 

          I know I am incredibly fortunate to have received a second chance at life, and I intend to protect my life and my health in any way that I can. With President Obama and the Affordable Care Act, I will be able to do that without having to worry, put aside my dreams, or go into extensive debt. On November 6th, I will be voting for President Obama so that I have a chance to live a healthy, worry-free, and full future.

Blogging Scholarship
by YourLocalSecurity.com

Thursday, March 17, 2011

Best Books for/about Serious Illness (that I have read so far)

Drums, Girls and Dangerous Pie and After Ever After by Jordan Sonnenblick- I don't know how, but by some miracle Jordan Sonnenblick has managed to capture perfectly the persona of eighth-grade boys, and an older brother struggling with his sibling's diagnosis, and a teenaged survivor trying to figure it all out. I don't know where he got his source material or his ideas for the external and internal dialogue of his characters, but it is all so perfect.
He brings to light the plight of siblings and the struggle of late effects and survivorship- two stories that never get told- with honestly and a tone that rings true and also some very realistic and genuinely funny humor. A few parts are a bit cliched, but so is some of life. For writing a book that I feel like I could hand to a friend and say, "See, this is kind of what it's like" and then have a basis to discuss so many things with, I think Mr. Sonnenblick deserves a medal. It's even an amusing and good read if you haven't had any experience with the serious illness community (I think).

Illness as Metaphor by Susan Sontag- Very academic, and a little dry at points, but a very revealing analysis of the ways that cancer and other illnesses take on whole new levels of meaning in our society because of the things they get associated with and the nature and characteristics we ascribe to them. Great place to start debunking the stereotypes of serious illness, and to help open people's eyes to the things they may associate or believe that aren't actually true at all. Even while I was wishing it was shorter, I wished she was going more in-depth. It would be fascinating to do another update (she did another essay after the AIDS epidemic to analyze its metaphors) with all of the new myth, metaphor and mythology surrounding cancer. But, sadly, she died from MDS /leukemia. Maybe I could work something like that in to my thesis.

Everything Changes by Kairol Rosenthal- Very raw and honest interviews with young adult cancer patients and survivors (and ____s because some of them do not like the term survivor or are living with cancer as a chronic illness and therefore do not claim the moniker of survivor) that cover a huge range of topics. This is actually a good companion to the Sontag because it helps to blow the lid off many myths about cancer patients. For me personally, this was very much a take-what-makes-sense-to-you-and-leave-the-rest kind of read. Some of the people interviewed had views that were a little too dark for me, or disagreed with what I found to be true for me about my illness and survivorship. The differences in age meant perspectives and issues differed. I may come back to this one as some new things come up for me, like insurance and romance. She seemed to look intentionally for people who had non-stereotypical views, and there were bits of it that to me smacked of rebel-for-the-sake-of-rebellion mentalities and the complaint that "young adult cancer" doesn't receive enough attention, or doesn't have cure rates high enough, or doesn't have doctors catering to their unique needs always makes me a bit mad. When was the last time an Aplastic anemia website was featured in TIME magazine? Yeah, that's what I thought. You have whole charities devoted to you. While I'm sure the individual experiences of patients may have been difficult, especially in practices or with diseases more commonly associated with older people, I can't dredge up a ton of sympathy for their claims of being "undeserved". I thought it was really great that there were very specific and already vetted resources listed at the end of each chapter that pertained to the issues that were touched upon in the chapter. I didn't connect to this one as much as I had thought I would, and that's probably, very simply, because it wasn't aimed at my demographic. Maybe someday someone (maybe me) will write the version for young-adult survivors who were treated as children. I will fly all over the country and meet these people and have them tell the deep, true stories.

My hope is that the content of books like these, and these specific books, will spread so that awareness can be raised for the part of "cancer" and other serious illnesses that the public is not privy to and so often does not consider: the collateral damage of siblings and caretakers, emotional, spiritual, and existential well-being, late effects, and all the other things that go along with these illnesses besides the simple "fight", the baldness, and then the ribbons and walk-a-thons. I'd settle just for this information getting into the hands of the patients who become the survivors- that there will be issues afterward, that it doesn't mean a perfect life, that a lot of it is learning to accept and adapt to the parts of it, and figure out how it makes sense to talk about, think about, and hold them for yourself. I think this might help people avoid the long hard slog I was dealing with and find their way to the help they need faster. Forewarned is forearmed. They tell you every single possible side effect of every single med, but they give you no guidance on the fact that your life after this disease is something that you need to work through, towards, that you don't just snap back into shape and position like nothing happened. Something happens, and that is going to require adjustment and assimilation. I'm glad they're starting to do some college stuff through Dana-Farber.
I hope as the shift from survival at all costs to survival with minimized costs continues, that more and more will be available. As much as I want no one to suffer what I suffered when I was sick, I want no one to suffer what I have suffered afterward either.
I don't know if it is my job to write that/those books, to take on that crusade. I'm going to let time tell because I have the luxury of time and I am taking this opportunity to take a break.

Sunday, August 29, 2010

Am I On an Awesome Adventure?

I leave for Wes on Wednesday!!!
I seriously can't wait. I'm a little nervous to leave, and to see how I do with dealing with everything when I am there. But I want to meet people and start a whole new part of my life.
I get music, and bio, and camp and cool people. I hope the food is good, I hope my class schedule works out and I hope I make lots of really good friends.
But I'm also going to feel weird about heading off to the unknown. Having to do a whole new environment when I'm coming off one that makes me feel so good is going to be hard. But I have a much better sense of myself and a much better way to look at a lot of things than I did even earlier this summer. And Amy will be just a phone call away.
I just need to remember to Keep it Simple.
I will be meeting a million new people, but all I have to do is smile, ask questions, pretend it is camp, be myself, ask for phone #s and ignore the awkwardness.
I will be facing a whole new system and school, but all I have to do is use my resources, ask questions, and ask for help if I need it.
I will be starting a brand new part of my education, but all I have to do is pay attention, read, take good notes, study in an organized fashion, and seek out my professors for help if need be.
I will be tasked with organizing my own life, but all I have to do is be planful, be careful, make time for all my needs, and know myself.
I will be hit with a lot of probable stressors, but all I have to do is be kind to myself, stay in contact with the people who love me, pay attention to my body and my emotions.
Oh, and HAVE FUN!! And try to get camp onto campus, do a blood drive, a bone marrow drive, a performance of IN C, something random and fun like Unloved Sports, play Pep Band, get them scrambling on the field. But I have four years for those goals, and others that are sure to come up.
I'm pretty sure I'll be ok. But there's a lot of uncertainty like Rev. Biddle was talking about today. What I wish for, and what I've wished for in a lot of situations in my recent memory, is a full and child-like faith. I'm glad I have the VBS tape coming with me, because it's very important to the whole thing. I remember (or Mom telling me made me remember). Riding in to the BMT That Wasn't and singing the song from VBS the year before, but with my own modified lyrics: "I'm on an awesome, awesome adventure/gonna tell you about God's amazing deeds/I'm on an awesome, awesome adventure/Come discover the adventure God and the doctors have planned for me"
There I was, five years old, riding in to what could have been my death and destruction, or my life and salvation, with that attitude. I admire my five year old self immensely for looking at transplant as an adventure, and one that God had has a direct hand in planning in my life. I was headed off to the unknown, but I was sure that two sources of safety- God and my doctors- had planned my route and would keep me going. That is the kind of faith I pray for.
That "adventure" turned out to be both a dead end and the start of much longer, much more epic journey.
Who knows where this adventure will take me? I'm uncertain.
How will it go? I'm uncertain of that as well.

What I am certain of is that I am on what is going to be an AWESOME adventure, and all I have to do is try my best to keep the faith and discover what's in store.
It's going to be, like it always has been, a sometimes bumpy, sometimes wild, but always wonder- and awe-filled ride.

Friday, June 11, 2010

As We Go On...

And so, at the end of the day, my worst fear was not realized.
Mom was right, what is really important is that the people who know me, know ME, not my inspirational story. I appreciate still, Josh's words, and Peter's, because so long as the people I am closest to look at me and see ME, then I'm doing just fine. I may wince in the moment when I get called out as the visual representation of perseverance or whatever other admirable quality, but I am ultimately damn proud to be making survivorship look so good. I leaped a couple extra hurdles between kindergarten and here, and that is worth acknowledging. I'm glad that I can stick that in my back pocket, and that everyone always knows when I'm getting called up for an award :). I'm also glad that I have achieved enough that I can get honored for what I have done besides survive a bone marrow transplant: organize the band library, make good comments in history, raise money for charity, and lead override walks. If there are people out there who only know the sob story, they are balanced by those who have no idea about any of it. Although I don't think of any of it as having been all that difficult, doing normal was a lot harder for me because of the situations I was in, but I still managed it. That is what I personally celebrate most: how far I am have come since I got "developing skills" in interacting with others, and just how normal I am now.
I am who I am, and aplastic anemia is and always will be a part of that. And I do honor that, I honored it by going to New York, and with everything that I do for the Craft Fair and camp and blood donation.
I'm excited to be a little bit more able to control the way people see it in the context of my life, but at the same time, I know that I will not be leaving it out completely, because it is important.
I guess I hope that I'm not just that kid who had that disease, but, as Sloane said, someone who showed my classmates how to give back, and why it is important to acknowledge those who have helped you.
And, I hope that they all always remember how to pronounce Aplastic Anemia.
I'm going to miss this class of big personalities. Their humor and insight and achievements have made all of my days at school so much richer and more interesting. They all put up with me and my crazy plans and random sayings and they came to the Craft Fair and donated blood. I love them all, and I will remember them for a long time.
It's starting to feel more real, that we are going our separate ways and will not be tied by that place called the Regional anymore. But we have a long summer ahead of us, full of laughter and more fun and craziness and adventures, intellectual and otherwise. And I know I'll be hearing some really good things about them in the future. It will be everyone's actual departure that will make it real, especially my own. I'm looking forward to all the fun between now and those inevitable departures, and starting to get genuinely excited for the adventure ahead. My life is definitely richer for these last four years.

Wednesday, April 7, 2010

Suck it, Harvard

So, apparently, the college application/selection process does NOT get less stressful once the decisions are in. I got kinda hosed, as did a lot of other people.
It sucked.
I had pictured things going very differently, and had started putting myself mentally into certain schools, imagining what next year will be like.
But the schools I imagined were not the ones I got into. I am/was disappointed. But, ya know, it's a number's game. No one's life is ever 100% perfect. I've beaten much longer odds before, so I guess it wasn't my time. And the options I have are good, it's just weird that I haven't seen them. I will find a place I like, and I'll go there and if it isn't a fit, I'll transfer. Second-guessing myself always sucks, but I have to put that aside and say that I did the right thing. And I will continue to do the right thing, pick the right option with the cards that I have. I'm pretty good at playing sucky hands well.
It still stung. I deserved it, and what sucks about the system is that thousands of kids who deserved it didn't get it. People don't always get what they deserve in life.
That was crummy, then I lost my wallet, my heart wasn't in Easter, and I couldn't deal with homework.
But the field trip was still fun, I have lots of support from friends in similar boats, but we all do have really good options. We'll all be just fine. Once you cross a certain threshold, you will be just fine. And, in a way, I get a whole other shot at this for grad/med school. The competition is a little less intense there.
And this week, well:
we had an awesome team dinner, blew the Lynns out of the water to finish the season 17-1, had the reader say "These kids make me feel dumb", it was Mr. Bucci's best record yet, he remembered to put in an announcement, I'm going to Six Flags, I spent the whole day sorting stuff and hanging with Mr. Fecke, I supported Jeweliann, Prism was epic and I love the Band. Jolly Coppersmith, Tim's key-tar, the trumpet's doing Mario Bros., Meg and Taylor doing Black, Sloane's piece, Peter wrestling/not wearing shoes/composing sick sax section features in twenty minutes, helping set the stage, the drum section t-shirts, taking pictures outside. I'm going to miss them all so much next year.
Mr. Fecke said he won't know what to do without me, Mr. Fecke's moped breaking down and random non-band seniors giving him a ride, Sloane fighting Henry to give him a ride home.
I played my piece so well, and I wasn't nervous or out of breath. It sounded good and I did it. I set that goal, and I achieved it. As Mr. Fecke said, that's one to stick in my back pocket. I'm proud of myself.
I'm going to get to see the two Maggies at UVM and miss a day of school, Mr. Conrad said I can make a presentation to the seniors, I got picked for the scholarship, I'm nailing my VHS course, Mr. O gave me candy for my excellent College Bowl performance.
The weather was beautiful, it is spring. I'm savoring the first of the 'lasts' as I end my senior year. Vacation is coming. The boys are doing amazing at History Fair. The season of a million band gigs is upon us.
So suck it, Harvard, Yale, and Princeton. You turned down one hell of a kid, and when no one's encouraging your students to save lives, or captaining your college bowl team to its best record ever, organizing the un-organized, winning awards, playing beautiful clarinet solos in a darkened hall, you're going to wish you took me.
But I'm going to be busy kicking ass somewhere else.

Friday, May 29, 2009

Such is the Life of a Musician...

Rover is over, we made out ok-ish, but I think Noah Hebert now hates my guts. School is winding down and I'm getting really excited for CAMP! Also, I'm running for President of the school, in NHS, and starting to do a bunch of college stuff.
What I'd like to comment on, though, is all the band stuff I've been doing lately.
I had 3 gigs in 5 days, from Saturday to Wednesday.
First was Melody Miles with Jazz Combo. We had to be at the O'Neil's house at 9:30. I came home with a fever the day before but drank a ton and managed to sleep it off, though I still wasn't feeling great. It was overcast and kind of cold. We played for like an hour (including like 25 minutes of Listen Here), as runners awkwardly passed us. The parents stood around and watched us. Peter kept tackling Justin, calling it a citizen's arrest. Both Mrs. Thomas and Mr. Pacione brought us donuts accidentally, so we had 2 dozen. The guys were freaking out over the donuts and were wicked excited. Peter made Swizzy play a 10-minute solo so he could eat a donut. I got like 3 donuts, but my feet were cold and my air wasn't great.
Next, that annual bane of our existence, the Memorial Day Parades. This time with Mr. Fecke on crutches and painkillers. Sloane did a great job. I had to pee during the Hamilton parade and it was very sunny for both. No one had the music for Amazing Grace so Mr Fecke just said "Peter, can you knock out a round of Amazing Grace?" then started solfegeing it. He did and it sounded great. Jake Namaroff was hacking up a lung in the Hamilton Cemetery. The cookout at Henry's was fun, they threw Declan into the pool. The Wenham parade was hot and sunny, they made us march all the way back to Buker, and they song they played was really long.
I was sore and exhausted and mildly dehydrated when I got home, and what did we get for our miles of work? The usual "Hey, thanks Erik" for Mr. Fecke as the parade marshals drive away. An article in the Chronicle that in the part about Hamilton specifically mentioned the PA system mounted on the back of the police golf cart and didn't talk about us, and maybe five lines in the part about Wenham.
Then Wednesday was the EdFund golf tournament at Myopia. We didn't get info until the night before, via facebook from Mr. Fecke. We left school semi-illegally, had to load up cars in the rain, and Henry had to break into the Luddy's house to get a part for Swizzy's piano that Peter had left there. So Henry got lost on the way, and when we got there they made us unload around back in the rain and mud. We were put on a back porch away from the real dining room, and the guy in charge dropped not-so-subtle hints about us being too loud last year. Well, you put us in a slate tile and glass walled room, what do you expect? And then, when we're getting ready to start, he comes over, says "Remember kids, it's background music, so don't get too crazy" and shuts the door behind us and pulls the curtain. We play for an hour and at the end I'm starving and my lips hurt. We are sent up a hill in the rain to the drafty shed behind the pro shop where they give us food. We meet a few kids who were caddying, and are thankful we were indoors. I feel like we bonded as a group, and we had some fun at that meal, and playing. Peter gave me a harmony part for the head of Freddie Freeloader, which was a first. Its our last gig of the year and our last with Nick ever, so its a little sentimental. Peter threatens to citizen's arrest Justin. Anyway, we then load up in the mud and rain, go back to school (its now after the end of the day) we unload into the practice room because the teachers are having a very serious meeting.
We get a mention on the morning announcements that I don't hear, and supposedly some ice cream after school next week.
So for alternately freezing, frying, and getting soaked, going in back doors, lugging drums all over the place, fighting off a nasty virus, getting up early on a Saturday, missing a physics lab and spending my entire day off serving the community, I got: some awkward waves and a honk from Mrs. Frost, a few lines in the Chronicle, a morning announcement, donuts, a cheeseburger, and some ice cream, chapped lips and sore legs.
Yeah, being a musician is awesome....

Wednesday, March 25, 2009

I Did It!

Well, since I last wrote, science fair went ok, but Greta and I got Mahika Pradan's dad as a judge and he kind of tore our whole project apart. The other judge we had was nice though, and we were done with all our judges by 3:45, which was amazing. The last couple weeks of school have been crazy busy, but this week has been low homework, which has been really nice. I made some plans to reduce the craziness and my stress and they are working out, which is good. I'm at a pretty good place with Rover, not having panic attacks over it anymore, even though check #1 was a disaster, I think we're going to learn from it and be better. I'm still really enjoying my research paper on the 1918 influenza pandemic, which is a little weird, I know, but I'm ok with that. I'm signed up for four AP classes next year, but I'm actually excited about all of them. Even spanish, which I was on the fence about seems like its going to be fun. I'm doing well in my classes and it feels like summer is just around the corner. Things are pretty good with Peter, and I'm starting to think about prom (more on that to come, I'm sure :P).
So I'm feeling pretty good right now, ans especially amazing because I just got home from the Prism Concert. Since I'm in Jazz Combo, we of course had to play. We did Blue Bossa, and because of time constraints, only Dave and I soloed. I was freaking out at the idea of soloing in front of a big crowd, when I was the second of two soloists in the last act of the night. I was so terrified. Corey helped me work through the song, which gave me a little more confidence. Still, I was shaking before we went up there.
But somehow, I made it through the entire thing and I was fine! I sounded good with the whole group, and my solo was actually pretty good. I wrapped it up in the right places, it had a little bit of rhythmic variety, and I went for some notes that were a little more "out there" than normal, and it sounded good! I was amazed at myself. I didn't lose my breath or get freaked out when a note didn't quite work. We only took two choruses (well Dave actually took three, not exactly on purpose, but I heard it, and it worked out fine), and that almost felt like not enough to "say" what I wanted to. It's amazing- if you had told me at the beginning of the year to solo for 32 bars I would have freaked outl, but now I want more. It was so great, and I'm so proud of myself. People told me I did a nice job, (not Peter, but I'm only a little disappointed :P) and I got over the hump of playing in front of people. I feel like I've actually come a long way, and I have that super-excited about music feeling where I'm just itching to play. I'm so glad there is music in my life, and that I can connect to it and experience it like this. It was an awesome night.

Sunday, February 22, 2009

One Year Later

Well, in the interest of bringing things full circle, I thought I'd write another post to match the one that started this blog. It's the last day of February vacation. This has been a good vacation, with lots of reading and sleeping, and fun. I explored with Grace again this year, and we marveled at the fact that our trip to Ipswich was a whole year ago. This year we discovered the expansive Appleton Farm trails, which were so cool. The family went to Buffs again, and the Museum of Bad Art, which was a lot of fun. Youth Group bowling turned out well, and we got a Rover meeting in. Shamrock for HAWC happened again this year. I played that same clarinet I bought a year ago, I should have had a birthday party for it.
Saturday there was an aritcle in the Globe about a new research buling going up at Dana-Farber; they're painting the Jimmy Fund Kids' names on the steel beams again. They made reference to the 1996 building on which they spray painted names too. One of those is mine. It made me smile to see how nice those people still are, sad that there are still kids there with names to be painted.
Today at church they did Mardi Gras Sunday and we had pancakes with toppings after church. The free-lance clarinetist they brought in to play with the choir on "When the Saints Go Marching In" turned out to be Corey, which was funny and it was nice to see him.
I finally started with a therapist, and I am amazed at how good it feels just to TALK. I think it's really going to help and I'm actually looking forward to it. I'm pretty excited for science fair, too, and about my history research paper on the 1918 flu pandemic. I'm not super excited for how crazy busy and homework filled my week is going to be, but the end of the week promises the potential for fun and the start of NHS.
Lately, I've been having weird moments of anxiety about Rover, but I think once we start moving towards working it will get better. We picked a name and logo: OPTIMISM PRIME, a picture of a robot. That's happy and exciting. Returning to band and school will be fun, and I'm really happy about the wheeled cart I built for walking to school. Can't wait to test it out.
Not happy about the physics lab which is confusing, or the stupid Lit reading we have to do for Spanish. I'm glad to be able to get to serve at Crombie tomorrow. Camp informed me my application is complete, I will potentially be spending TWO full weeks there this summer; that's a MAJOR happy :).
So I think there are a lot of 'happys' for me right now, and I need to keep my mind on them and avoid thinking about the 'bads' and the 'anxiouses' any more than necessary.
I'm doing fine, and I intend to continue that way. Spring will arrive soon, then summer and pretty soon I'll be a senior. Sometimes its crazy how fast time flies.
All in all, looking back on the year I've had and forward to what's coming, I can still say: It's all good.

Thursday, January 29, 2009

A Day in the Life

Well, I don't really want to go to bed, and I thought today about how it's been a while since I last posted here. I am still hopelessly in love with Peter, but he came to a snowball fight party I had, and having Sally to talk to about him really helps.
I was really glad for first semester to be over, and this semester is feeling a little bit better. I don;t really know why.
But since it generally ends up being mildly interesting: here's a little chronicle of my day today.

I roll out of bed at the usual time, like ten of seven, but still manage to make the bus.
A Block: Gym Mrs Hoar quotes me for the school newsletter about the "Choice Day" we have in gym on Thursdays, where we get to pick our activities. We watch a lame self-defense movie from the 80s and laugh at some of the unrealistic scenarios. Mrs. Pilkanis says a Hamilton cop will come to talk to us about self defense soon, and Henry and Peter spend the rest of the class creating questions slanted towards humiliating the cop over the first aid certification scandal. Mrs. Pilkanis tells them they have to be respectful, and I have a vague flashback to "Alright, when I say 'all ducks fly together' everyone get into a flying V and tackle him".

E Block: History We get our Midterms back, I got a 96, and see quarter and semester grades. Due to a less-than-stellar WWI test and History Fair, I have a B/B+ for quarter 2, but pull off and A- for the semester. That'll take some explaining for mom, and I'm a little upset myself. We talk about the Great Depression, and Henry and Mr. Knets rapsodize about an economist named Paul Krugman who looks kind of like George Clooney (at least to me).

F Block: Spanish We talk about the new Constitution in Bolivia. I feel like my speaking is getting better the more I practice. I did really well on my midterm, so I feel much better about that class.

D Block: Band More Bernstein. I really love the piece, but I need to put in a lot more rehearsal time to make it even passable. I'm having trouble fitting practicing in, and practicing in a focused enough way to make progress. However, I love band, and I wore my BA/ND shirt today, so its sweet.

Lunch: I eat Baked Potato Bar, which is awesome, and stare at Peter. A lot. I feel like he notices sometimes, but I don't know. It's a little bright spot in my day to see him talking excitedly with lots of other guys in our grade.

G Block: Math I got an 89.6 on my midterm, which is way more than I hoped for, and will do great things for my semester grade. We talk about rotational motion, I space a bit. Peter says hi to me on my way out of class.

H Block: Physics Charges and the math with them involve lots of REALLY annoying numbers and I struggle with the in-class problem. But I get some help for the Webassign.

Work: I don't do much, Jeni cleans shelves, we have a couple really busy clusters and Jeni cleans shelves. I am tired and eat a Three Musketeers, probably against my better judgement.

I come home and work on homework, interspersed with dinner and a long Peter-talk session with Sally. We love him. Homework is a drag, and I don't get time for too much fun stuff. If only I had done more homework earlier, but oh well. Thursdays are always like this because of my schedule. I just have to get through school tomorrow then I can relax.
So not a very interestin day really, but I felt like I just needed to write SOMETHING since I've had very little time for doing so lately.
Hopefully this semester will continue to be good, I'll stay on top of homework and make time for other things, and I'll find time to keep writing.

Saturday, November 22, 2008

So... what did you do this week?

So, just to put it in perspective a little, here's a recap of the last week of my life. The middle of November, you'd think it would be pretty typical. And in a bunch of ways it was. But my life is never quite what most people would call typical.

Sunday- Church. I talk to more kids about what they want to be in the pageant. We have a youth group meeting and mostly talk about fun stuff we want to do rather than service projects. Rev. Biddle is leaving it up to us, though, and maybe once we know each other better we'll do some bigger projects. Home for a billion hours of HW, since I have to meet a history fair deadline the next day (I HATE History Fair. I'm so glad it's over in a week and a half.)

Monday- School. I sit through a normal day. Mr Fecke hands out Sleigh Ride in Band. Sue and I hand in our draft. I'm settling in for the last class of the day, math (ugh). When Mr. Krol announces over the loud speaker that the school has gone into lockdown. There was an article in the paper that said something about the school planning a lock down drill, so I assumed it was just a drill. We had to lock the doors, shut off the lights, pull the shades, and stay away from the window in the door. We sat there in the dark and talked. It was NOT a drill. Some kid dropped some live rounds of ammunition in a classroom and another kid found them. We were stuck in the math room in the dark for 2.5 hours.
In one conversation I had with Sam, Kallie, Noah and some people, I mentioned having been at Glasgow airport, and that for some reason made Kallie think of the Christmas bloody nose, which led to a discussion of my webcam to the fourth grade, the transplant, etc. Sam was new to all this, but someone's response to his not knowing was "Where have you been?" It's funny that like everyone just accepts it as a part of my past. It's been nice to talk to Kallie more this year, as she was really there for all that and a good friend, too. Later in the convo, I mentioned something about my pneumothorax. Sam was incredulous. "What the heck, why do all these wicked intense things happen to you?" he asked. I wish I knew the answer to that.
When we finally left, we couldn't take our backpacks and we were funnelled out of the school in one direction and wanded by the state troopers. We couldn't go to our lockers or take our instruments. They cancelled all HW, but I had a lot of long-term assignments that I was planning on working on but couldn't. It was pretty relaxing, the family went out to dinner and then I chilled and went to bed pretty early.

Tuesday- Normal day of school, for a school recovering from having been on lockdown the previous day. We have a sub in spanish and get to watch a weird movie about a girl who becomes a drug mule. I go to work, get home and have to do quite a bit of hw, don't get to watch House and end up going to bed very late.

Wednesday- I have been looking forward to this day all week because we are having Jazz Combo after not having it for two weeks. This joy is tempered by stress over getting a physics worksheet handed in, and whether my mouse trap car has to go 3 meters for the testing. It doesn't, I get the lab done, we watch the movie again in Spanish. In band, Mr. Fecke hands out order forms for the super-cool band shirts we are going to order. They say BAND in the style of the AC/DC logo. I'm really excited, and Alex really wants one too. I think I might order him one and give it to him for Christmas. The mouse trap car doesn't have to do 3 meters, so I'm in the clear and the testing turns out to be really fun. Unfortunately, a teacher meeting in the band room crushes any hope of having Jazz Combo, but my lesson with Corey is still fun, and I get a lot of homework done in the wait time. I drive myself to Salem for a pageant meeting and Betsey and I iron out the casting decisions. I go home and watch the episode of House I missed (thank God for DVR), and go to bed.

Thursday- School per usual, but we play capture the flag in gym so Peter and I get to talk a little. About guarding interlopers from the otehr team, but still. Am I pathetic? YES. I have the afternoon off, nothing to do, so I relax and get a little ahead on HW. Uncle Ualter comes to visit, and I stay up late talking to him and mom about old family stories and photos. I learn some really cool stuff about Grandpa O'Regan. Like the time a protest he staged was on the CBS evening News and Walter Cronkite talked about him. Ualter said there's a high likelihood that the FBI opened a file on him because he had ties to the IRA. I hope we can get a hold of that some day, because it would be the coolest thing to have. They both said again that I probably would have been his favorite grandchild. It's sad that I never got to talk to him, that he didn't get to see me become who I am, a leader of voting marches and letter-writing campaigns. I go to bed late again, this time for a good reason.

Friday- School again, Fridays are a drag, all my classes, no gym, no band. In study Sally says that Peter went on Tim's facebook and saw the secret group we made. I hope he didn't notice that I'm the creator, I hope he doesn't think it's insulting or creepy. I'm pretty whatever about it, since I've given up on anything really happening there. I go to work, and with Skye, Jeni and no Mr. Connolly, it's really fun. Afterwards, I buy the stuff to make my trench cake. I have a delightful evening watching TV and making a cake that is a model of a WW1 trech, complete with masacred gummi bears, licorice barbed wire, wafer-cookie reinforcements. I had a really good time making it, and I can't wait to share it with my class on Monday.

Saturday- Work with Skye. She handles several customers without needing any help, and one totally by herself while I was in the bathroom. It's so cool to see how she's getting better every day. She leaves at 12, though, and I am swamped with customers and Nicole, Lauren, Brooke, and their parents visit since it is Chris's birthday. I manage to do everything and get out of there at about 1:10. He told me "Great job" on my way out. Weird, but he's been doing more praising since Elaina quit. He's still paying me 50 cents below minimum wage, though. I need to find a way to bring that up without seeming bad. Dad informs me that the boy's soccer team lost 4-2 in the state finals via text. They had a great season, though, and it was so cold I'm glad I didn't go. This afternoon I did really nothing, cleaned my room and organized my stuff, took a shower. It was nice and tomorrow I'm going to have a lot of HW, but it's all good.

So, in a lot of ways, very typical- school, work, HW, TV. But in a lot of other ways- talk about nosebleeds, terrorist attacks, BMTs, FBI files, being on lockdown, working on a Christmas pageant, and making a cake that looks like a trench- wildly abnormal. My life is so bizzare sometimes.

Tuesday, August 5, 2008

Awesome Day

Well, I've had varied survivor-related issues in the past few months, some kinda bad, and I really need to get on mom about the therapist thing. But surprisingly, going to the AAMDSIF conference and Capitol Hill day has made me feel much better about the whole thing. I guess knowing that there is a place that it's completely acceptable to talk about it, and having people who know exactly what I'm talking about is really comforting. So I'm doing better with all that since then.
But all that is not what I'm here for now. I feel the need to write about what a totally awesome day I had yesterday. I let myself sleep because I wasn't going to work and I got up about 9 am. I ate and mowed the lawn. Ian sort of quit doing it because he hated the job and how low the pay was, so I offered to pick up the slack. It makes me feel really cool to push the thing around, hear the roar of the mower, smell the freshly mown grass, and feel like I'm striking a blow to the face a sexism with every step I take. Sorta dorky, I know, but I had a good time. Next I took a shower, then watched a little Monk with Ian. After that, I went to the library and got another one of my summer reading books out, a Henry Reed book (since its a summer tradition), and a novel for me to read for fun. I then proceeded to read in my treehouse for several hours. It was awesome! That is exactly what I built the treehouse for, and it was so nice to just read and be outside. I figured out a new way to climb up and down, and I ate a nice lunch out there. Then, I practiced the clarinet and read some more inside. I drove to my clarinet lesson, which went really well, and I was happy to get back to that. Corey was happy with the work I did on the Mozart, which I was really glad about. I went home and got to talk to the woman who is going to design a professional poster for the Craft Fair! That is going to be soooo awesome. Then, I got to hang around and read some more, then I went for a nice bike ride all around my usual routes, then over to the convenience store for a slushie and some Hostess cakes. Home for more reading, and at about 6, I went over to Corey's. I wasn't expecting to get to hang out, but she was free, so we did. We mostly talked about our summers and school and the education budgets and stuff. Then we baked cookies and brownies and watched HOUSE then talked some more until 2 am. Her sister had Maddie Lanois over, and I think I got her hooked on House :). Corey and I are planning a season 5 premiere party with all our friends who watch the show. I loved the novel I got to read for fun. It's funny, but that was one of the best days I've had in a long time, and probably ranks up there with my best days ever. It was so simple, but I got to do everything I wanted to do, it was relaxed and fun and I didn't worry about work or summer reading or bone marrow or vaccinations or anything. The things I did were so simple, but they made me feel so good. I'm going to have to make a plan for more days like that in the future. I feel so refreshed and just...happy. This is what enjoying the summer is all about.

Wednesday, April 2, 2008

You're kidding, right?

So the past few days I've had some chest congestion, breathing trouble. Mom and I figured walking pneumonia, no big, but we'll get it checked out just in case. So we go to the doctor and she listens, says she hears nothing, my O2 sat is 99%. So I'm thinking this has been a big waste of time. She sends me for a chest x-ray and I go back up for the results. It takes a while and then she comes in and says I have a pneumothorax, which is air in the lining of my lung, basically a half-collapsed lung. They're pretty common after trauma, but a spontaneous one (which mine appears to be) is pretty rare, surprise, surprise. Honestly, I found it pretty funny, just the fact that it was me, and this weird thing instead of something lame and basic like bronchitis. Mom did too, and we were practically laughing while the doc explained it. She prob thinks we're crazy. So for this they take a wait and see approach, so I go back on Monday for another check, then if my body has re-absorbed the air, no big, if not they put me in the hospital for 24 hours on 100% O2, and re-evaluate. If that doesn't work, they basically go in with a needle to get the air out. Kinda freaky, and I hope it resolves on its own, though I kinda enjoy the whole medical rarity thing. Probably far too much for my own good. It's one of those psychological issues left behind by my sucky bone marrow. It's odd, because as much as i want to get better, there's a part of me that wants the drama of the more invasive treatments. I know I shouldn't hope to not get better, but I can't commit to hoping for recovery. Going back to school and having to tell everyone was a hark back to the days I explained bone marrow failure to my class. It was weird but pretty fun, another weird psyche thing. The bummer is I'm banned from physical activity and clarinet playing until Wednesday. Which mean probably no In C, no practicing, no clarinet choir, and no lesson with Corey. Also, no running in gym (how sad) and no exercising on my own (including walking to school which is a bummer as its nice out). So I now have nothing to do, and I am getting bored. I'll have to find other stuff to do to make up for it. Overall, a very odd day, and I'm sure it will be an odd week. I guess I am just a freak of nature, through and through. It's just so ironically funny that every time I go to the doctor's office, it ends up being weird. She said in a typical practice, you see spontaneous pneumothorax about once every two years. So it's like a 1 in 1000 chance. Which makes my medical history now like a 1 in infinity chance. My life is just one big instance of cosmic irony, I guess. What was a little off-putting was the concern everyone else had. Only Grace seemed to find any humor in the situation, and she said it was only funny because I found it funny. Well, I guess that's life... only really my life though.

Sunday, February 24, 2008

End of Vacation

Well, it's the last night of February vacation. I'm sad to see the restful time go, but at the same time, I'm excited to get back to school. I feel very refreshed. Mr. Fecke's facebook status says it all : Erik Fecke is excited to return to band. I have a new clarinet, so returning to band will be especially fun. I'm waiting anxiously for my clarient lesson to find out from Corey whether this was a good buy or not. Returning to school means returning to the crazy pace of life, the homework, and the stress of school. I didn't do much homework at all this vacation, but I think that should help me be ready to attack it anew this week. I always love going back to school after a break because everything feels exciting and new but familiar at the same time. I'll get to see my friends and hear about their vacations. It'll be good. The time over vacation always slips by so fast. But I actually did do quite a bit: work, babysitting the Mentes, Shamrock for HAWC, church, building a treadmill, reading a bunch, sleeping a bunch, finishing my science fair testing, jamming with Sloane, hanging with Grace throwing snow into the Ipswich river, exploring frolicking in the snow, and being randomly kind, spending time with my family, walking with Charlie, playing the clarient I bought this vacation. And now it's time for dinner and Toscanini's ice cream for dessert. It's all good. :))