The lovely has posted the table of contents for Mythic Delirium 22 in which my poems will be appearing! I’m very excited about it and happy to see so many of the other awesome poets I will be keeping company with. My poem "The Anchorite’s Song" is right next to Sonya Taaffe’s poem which means a lot to me as I’ve long admired her work. It’s funny how sometimes the most unexpected but wonderful things can happen. Anyway, I love all the titles and can’t wait to read everyone else’s poems 🙂
Month: February 2010
MFAs and Celiac Disease
The good news is I found out a few days ago that I was accepted into the Vermont College of Fine Arts MFA program in Writing for Children and Young Adults. I am so excited! They actually called to welcome me which I feel bodes well for the program 🙂 Leda Schubert (one of the faculty) also called to welcome me and answer questions so we talked a lot about Lyme Disease and possible accommodations. I admit that even though I’m excited about all the wonderful things happening in my life I’m also starting get scared. It feels like my life is moving on without me regardless of my ability to keep up with it physically. This is what I wanted. I wanted to keep having a life beyond being sick, but everything is happening so fast! We still have to record demos and then it’s off to Portugal. I’ve got to finish a novel and read enough books written by the faculty to get an idea of who I would like for an advisor. Before July! I hope I can pull it off.
The bad news is that my stomach has been much worse lately. It’s hard to pinpoint because it swings back and forth, but I think it started to disintegrate around Thanksgiving and hit an all time low in January. I had a moment of panicking a few weeks ago when I realized that if this continues (the pain, uncertainty and sore throat) I cannot hope to have a career as a singer. I can write to some extent with joint pain. I can write slowly. But I can’t commit to performances if I can’t depend on my own body. Being sick is hard, but I can deal with pain and fatigue. I can’t deal with things that keep me from physically able to do the things I’ve loved. And as much as I’ve asked myself for years if I had to choose between writing and singing which I would keep and which would go, I really cannot choose. It’s like choosing between your heart and your brain. I need them both. They complete me.
So with that in mind I hiked up my skirts and hied me to the internets to try to figure out what out of the myriad things I haven’t been tested for I might have. Let me tell you, the list is not comforting. There’s a lot of things that could be going on but from what I’ve seen most of them are mysterious in origin and would probably be something I just had to live with sans treatment. Then I reconsidered the possibility of Celiac Disease. This is something that has been brought up before but I always dismissed it out of hand because my main symptom is carbohydrate intolerance. “How can I have celiac,” I have asked many a doctor, “when I feel sick if I eat rice?” The irony is that whereas most people moan and sob about having to give up bread I have often said I wish I did have Celiac. At least then I would be able to eat chocolate and rice and corn and potatoes and gluten free desserts, etc, etc.
Anyway, I came across an interesting blog written by a woman who has celiac and small intestinal bacterial overgrowth (which causes carbohydrate intolerance) and my brain did a backflip. What? You mean you could have both simultaneously? Apparently I have less imagination than I thought, lol. Turns out many people with Celiac have small intestinal bacterial overgrowth or SIBO. When people go on the gluten free diet and still feel sick this is a common cause of their continued symptoms. IT’s very possible that celiac itself causes SIBO in these people because it destroys the lining of the intestines and interferes with proper digestion. So I started looking up more about Celiac. It can cause joint and muscle pain, headaches, fatigue, numbness, tingling, dizzyness, and many more things. It runs in families. Like Lyme disease it’s underdiagnosed and the tests aren’t always accurate. I was actually tested once but don’t know which tests they ran and was on a mostly gluten free diet at the time which makes it nearly impossible to get an accurate result. It’s actually odd how many similarities there are between Celiac and Lyme only Celiac is actually recognized by the medical community as a legitimate illness.
To make a long story short, I talked to my doctor about getting tested and we agreed that it was a likely possibility. The only problem is I have to eat large quantities of gluten (bread, etc) for a month before getting tested which means I feel like shit. It’s actually amazing how many of my symptoms are back in force just since I started eating like this which makes me wonder, do I have Lyme or Celiac? I know I could have both, but it is rather inconvenient that I went on a more restricted diet when I started taking antibiotics. Now it’s impossible to say whether it was the diet or the antibiotics that helped. Part of me is enjoying eating all the things I haven’t been able to eat in two years. I’ve eaten oatmeal pancakes, lots of bread, ravioli and pizza. Oh bliss! I still have to eat a marionberry muffin, a giant slice of chocolate cake and french toast because regardless of what the tests say I cannot eat like this again. It is death. So I shall enjoy myself while I can. I also did a different test for SIBO since the last one was negative and got me curtly dismissed by my gastroenterologist.
I was praying last night over and over again that this is what I have because then maybe I could get better and get my life back. Maybe after being carefully gluten free I’ll someday be able to eat rice and fruit and chocolate again. Maybe my throat will stop hurting me. Maybe it will explain the mysterious illnesses of both my parents who btw are cousins (yes, it’s legal. No it’s not gross) so double the genes. My dad’s getting tested too. I’m keeping my fingers crossed. Of course, I would probably be the ideal candidate for a gluten free diet as I love the idea of having to reinvent all my favorite baked goods. Gluten free chocolate bobka! Gluten free chocolate cranberry bread! My celiac friends (I seem to meet more and more people with this disease) will love me. The one thing that breaks my heart is that I would never be able to eat a Pasteis de Belem again. That is a true tragedy. I guess I’ll have to invent my own.
Our Latest Performance
So the performance at Hannon library went really well! My dad and I were, of course, nervous wrecks. None of that nonchalant courage for us! We really had no idea what kind of crowd we were going to get so I was pleased to see that the audience was pretty full. One of the librarians counted fifty people, I think. My dad read a bit from his essay on writing The Undiscovered Island, showed some beautiful photos of the Azores and read an excerpt from the book–the part when Julia wanders into the garden of Maria dos Santos. And then there were questions, and such questions! It felt good to be educating the masses, lol.
Just when I couldn’t stand sitting there anymore (my stomach without fail betrays me every time I have to so much as stand up in front of people and talk, much less sing) it was time to perform some songs. For clarification the songs my dad and I are working on are set to famous (within Portugal) Portuguese poetry. My dad writes the music and plays the guitar. I sing. And Chris Matthews plays a mean cahon (Spanish drum). We chose three of the Pessoa poems my dad set to music because Pessoa’s poetry is a huge part of the novel, one Florbela Espanca poem because most of the songs are set to her poems, and I sang a fado a cappella.
The difficult thing about performing these songs is that they are in a language most Americans are unfamiliar with, therefore conveying the meaning of the song is a real challenge. Because I’m not fluent in Portuguese myself it’s also difficult for me to explain said meaning coherently without feeling like an idiot. So my lovely stepmother wrote out a few sentences for me to say to introduce the songs. I was really nervous about that, but I think it went well. Actually, I’m surprised at how well it went. Not perfect but, good enough to where I am beginning to think I underestimate myself. See, I’m ridiculously shy. I’m an introvert. Part of me just wants to hide in my house with my cat for all eternity writing weird stories and poems, never having to face the world. In a lot of ways I’m not a born performer. I don’t thrive in the limelight, but at the same time I’ve always craved it. I think mostly it’s a desire to be loved and appreciated after being invisible most of my childhood. But that desire can get… complicated. Anyway, somehow I’ve learned over the years how to perform, given the right circumstances. And my god did it feel wonderful to actually have an audience that was listening to me, not chatting over their mochas or coming and going. I could just focus on the song. I could lose myself in the emotions. And when I looked out into the audience I saw people sitting with their eyes closed, just as lost as I was. That felt good. Really good.
We live in a culture where we expect artists to bend over backwards to entertain us. We like our singers to be sexy, theatrical, charismatic, etc. But I like to think a voice is enough. I like to think that the ability to evoke and channel intense emotions is worth more than those other things. Because when I sing, when I really sing, I lose it. All the emotions I usually don’t show come pouring out of me, leaving me shaking and exhausted. I like to think that’s enough.
Anyway, I hope the above doesn’t come off as arrogant. I’m not terribly charismatic, I’m too shy to be theatrical and I’ve never thought of myself as classicly attractive. I’ve had to put up with a lot if idiots informing me I couldn’t possibly be a singer if I was afraid to perform in front of people. So from perspective I need to find something in myself to believe in and I have to believe a voice is enough. Because, in the end, isn’t that what singing is ultimately about? The music, the voice?
After the show it was wonderful to meet so many people with ties to the Azores, either through distant family or friends. Everyone loved the music, even those with no understanding of Portuguese and lots of people bought to book and asked for my dad to sign it. I sat there thinking “I want this.” I want to sing and I want to sit here giving out books, my books someday, talking to people. And it struck me that I worry so much about wanting both these things–music and writing–and agonizing over whether or not I can have both. Maybe I should just stop worrying and start living. Because I can’t make a career happen, but I can do the things I love.
