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.

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.

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.

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.

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....

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.

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.