Today was an uppy-downy-roller-coastery kind of day. My children came over for the weekend, and I hadn’t seen them in a couple weeks, so I was looking forward to seeing them. They are fourteen (my son) and thirteen (my daughter), and they seem to take turns being The Sweet One and The Hostile One. This week, it’s been my son’s turn to be The Sweet One. Sigh. I was excited to see them anyway. Esther Gabriel Kittenpants was here, and I knew my daughter would adore her. Of course, maplestar is also here, and my daughter… well, we’ll just say she doesn’t adore him. She doesn’t approve of me being involved with him, and she’s angry and hurt on behalf of her father. I’m sorry that our relationship angers and hurts her so much, but I will not tolerate her being disrespectful or even nasty to him or to me. The tough part is, teenagers loooooooove to walk that fine line between being smart-alecky and lippy, and being disrespectful and nasty. And having a grown-up, almost dry and witty sense of humor, my daughter has always had a hard time with her mouth getting her into trouble.
Miss Esther Gabriel Kittenpants was showing more signs of a kitty-cold today, but I wasn’t terrifically worried because she’s still eating well, and because we had a vet appointment scheduled for her. She is fine – no feline leukemia or FIV – but for her kitty-cold and a case of roundworms. She had her first worming and came home with a bag full of medicines, and I know she’ll be back to normal soon. She’s very playful, very spunky – a real little fighter – and my daughter loves to call her Scrap.
After supper, my daughter amused herself by getting on my nerves. Her favorite game is to push and push and push, until the point I tell her she absolutely cannot push any further… and then she pushes and pushes and pushes some more until I blow up and yell at her. THEN she plays the victim card, unable to understand why everybody is always yelling at her. (Yeah, very teenagery. I know.) So tonight, I just got quiet. We were in a pet supply store, and I asked her and her brother to go look at the fish while I finished up. Instead, they snuck up behind me and tried to startle me. I repeated my request, and they walked away, and then did the same thing again. Finally maplestar took the cart and made some evasive maneuvers while I went down around the other side of the store to the registers, and I had a few moments of silence to settle myself enough for when the kids caught back up with us. Once we were all rung up and getting back into the car, my daughter started up with me again. I just remained quiet, feeling my frustration and anger, recognizing them for what they are, but not expressing them in ways that would be counterproductive. Instead, once we got home, I took my sudoku book into the bedroom, shut the door most of the way, and stretched out in the quiet to try to relax. The anger started to soak back into the earth, and in the quiet I was able to restore my emotional equilibrium. It’s amazing how our family members are the ones most able to push us into those reactions. Ah, well.
My daughter had a session with her math tutor tonight, and they started working on some geometry as a preview of her course work this coming school-year. I can see her feeling more confident about math, and she is already liking geometry much better than she liked algebra ,which didn’t surprise me one little bit.
We went out for Italian ices, and after that maplestar and I made some music. I sang a couple of the songs I worked on this year, while he accompanied me on the piano. Then I took out my flute, and we tried my favorite Bach sonata with the harpsichord. It was… mostly okay. The tuning on the harpsichord was different, so I ended up reading the E-flat sonata in the key of E, so that we could match pitches. So the note names would be the same, but instead of three flats, I was playing four sharps, and all the accidentals and the scale passages (where my fingers knew what they were supposed to do, but that was all wrong for being a half-step higher) tripped me up. I can sight-read something where I have to transpose in my head without too much problem – though the accidentals can trip me up – but to do that with a piece I know so intimately was really difficult.
After that, I played a couple more things on my flute, and I realized that I hadn’t even taken it out of its case since Easter Sunday… and before that, I hadn’t taken it out of its case since late December. I only played for about fifteen minutes, and even with the special device my flute teacher had made me for my right hand, it was completely cramped and had to be massaged back into normal shape. My neck was spasming, my back was tight, and the pain was building in my hips and knees. My heart had been flying from the music, and I realized that making music on my flute is going to be one more thing I will mourn. After twenty-eight years, I don’t think I can consider myself a flutist any more. There aren’t many things I have identified as a part of myself for longer than that. A female, perhaps, the daughter of my parents, the sister of my sister. A lover of books and reading. I could never give up music entirely – that would eat the soul out of my body in no time – but it looks like this part of my identity will need to be properly remembered, buried, and mourned.
About a month ago, one of my favorite bloggers and just one of my favorite people, wrote a blog post about grieving for lost futures. This Ehlers-Danlos Syndrome, this chronic pain – it will never completely go away. I will never be the same person I was a few years ago. I will always have to make decisions, will always have to weigh my activities against the pain and harm they could cause to my body – if I go bowling with the folks from work tonight, how will I have to pay for that tomorrow? if I fix supper tonight, when I’m already so exhausted, will I be able to make it into the office tomorrow morning? if I spend the afternoon out, will I have the energy for the housework I have waiting for me? if my son doesn’t help me mow my lawn, will it tear up my joints to do it myself? Playing the flute makes my heart dance, makes my soul leap… but it makes my hand stay curled like a claw, and it makes my neck and skull and back muscles spasm, after a mere fifteen minutes.
Right now, my son is playing his favorite online computer game. My daughter is tucked into bed, curled around tiny Esther Gabriel. Maplestar has gone to bed, too, but I’m too wound up yet to sleep. I have pain all through my body, from dull aches to sharp stabs, and my mind is still unsettled. I have a book to read, sudoku puzzles to solve, a couch to lie on with my ice pack. I have many things to thank God for – a wonderful home, awesome (if annoying) children, an absolutely amazing fiance. I’m thankful that I can still play my flute at all, and that I can still sing. I’m thankful that maplestar is a musician, and that I can hear him play piano and organ and harpsichord. I’m thankful that I know now the illness I’m facing, even if there’s not a cure for it. I’m thankful – in a strange sort of way – that I know a few family members who have it also, because when the pain strikes – and especially when others doubt me, because the syndrome is completely invisible – they still know and understand and believe in me.
Next week, my car is being repaired, maplestar is participating in a sacred music conference, and I’m traveling to another state for my job. When I return, I’ll take a taxi to the car dealer, pick up my car, drive back past the airport to pick up the kids at their cousins’ house, drive to the conference to pick up maplestar, and then come home… probably exhausted and craving comfort and quiet, but needing instead to feed them all, love on the pets, get the laundry going, catch up on mail and voice mail and email, and lots of other fiddly little details. Ah well – that is for next week. For now, all I need is to try to sleep, perchance to heal.
Good night, my beloved friends. May God the Father watch over you this night. May Jesus, the Son, hold the Light in the darkness, for when you feel afraid or alone. May God the Holy Spirit breathe life and strength and comfort into you. And may the angels of heaven stand ’round you and protect you, until you wake in the morning.