10:35 p.m. - 07/01/03
on the contrary...the fact that you can feel pain like this is your greatest strength.
I spent most of today remembering why my anxiety disorder can compete with any other part of this illness for the title of "most devastating." Annoyingly enough, I wasn't even doing anything particularly frightening; I just didn't think to take my meds before we left, and then the amount of sensory stimulation (the first place we went was a mall) alone sent me spinning. I did get to see my grandma and my aunt with Down Syndrome (as well as one other aunt, and a handful of her "children" who all apparently grew up while I was blinking). My aunt looked really well. She'd just gotten back from a visit with another aunt and the one who was watching the house when we arrived, and she was grinning proudly about having gone camping and fishing and so forth. She's already had a more active summer than I can aspire to, which is good; she deserves it. My grandma...looked a little less well. She'd been to the doctor (cardiologist) and was pretty wasted from the effort. At least, that's what I keep telling myself. It's not entirely true, though. I want to believe that today was a real fluke in her reality, and I did not see her typical state because I want to believe her health is not degenerating. It isn't true, though. The internal strength that drew me to her as a child is now almost invisible on the outside. Her emphysema (and perhaps a little eating disordered behavior, which I wouldn't suggest except she sometimes talks to me about not wanting to eat, wanting to lose weight on purpose, et cetera) has left her (physically) extremely frail, and it isn't finished yet. I was holding her arm for a little while today, and I had to be careful how I touched her. Sometimes my hand would start to curve against her forearm, and the thinness of it threw me right back into the hospital. Illness doesn't make a great deal more sense in older loved ones than it has with my girls, even if it's a bit more expected... Today there was no storytelling. She struggled to breathe, and we sat in near darkness, watching the television. I've never watched the television with her. I've never seen her watch television. By the time we left, I was so ravaged by my own illness that I couldn't even tell her that I love her. I want to go back again soon, see her again, tell her...but I also know that the visits from now on are going to be more and more like this, and less and less like the ones I remember. No more pretending her break to gather breath is just a dramatic pause. Less and less pretending she's immortal...
She still has those one-liners though. Today my mom said, "How fun is that?" and got chewed out for her grammar. She was told not to "leave half the sentence at home on the desk." She also said that, "it's like adjectives and adverbs don't even matter anymore!" which almost knocked me out of my chair, considering I whine about that so often my friends could recite the speech. ...I guess it's just hard to hear those things and remember so much of who she is that's getting lost behind the illness. Breathing tubes, doctor's appointments, seeing her tiny as the mama at the end of "Love You Forever"... She walked out of Brooklyn when she was four years old. She met my grandpa, having sneaked out of the house; he was a sailor, she was all for it, just told him that...when he called the next night...he had to pretend it was a blind date because she wasn't supposed to be out. She moved to live where he did. She had seventeen children. She kept and took care of her Down Syndrome baby (after being told that if the child survived more than a few years, her only life could be in an institution) all these years. She's fierce, with a fiery humor, a Brooklyn accent, Irish blood, and the best sort of storyteller's heart. She's such a matriarch; the family looks like chaos without her standing strong in the middle. Sometimes, I have to wonder where we go when we're no longer visible. I know she isn't gone, but it's so difficult to find her. I came through illness to find myself again, having seen about as much of my identity as I had of my cousins'. I thought I was lost, but I was here. Somewhere. I want to have that key, that compass, that map. I want to know that secret.
I will always be grateful to her. (For everything, but especially...) For hanging on these past three years. I know that since my grandpa's death, she's had more pain than pleasure, and at times telling a woman in her place to hold on is ludicrous. But I will always be grateful to her for hanging on that spring in the hospital, to pray for me that fall. I will always be grateful to her for showing that strength, for holding on not always because she needed to but because she was needed. Thank you for teaching me what it looks like to be strong.
Seeing cousins again brought up a lot as well, but I don't think I want to go into all of it tonight. I've just been thinking a lot about that girl who was so clearly here last night, and the promise I've made to parent her and give her what she didn't have. And it's funny, almost, in that you'd think there were actually separate people - the memories of who I've been at different ages that are searching for healing - because I'm frightened, saddened, hurt, and angered by all the things I can't protect her from. I'm sorry about what doesn't happen for her when she's so tiny and so sick (but trying, trying, trying not to be), and I'm sorry for what will happen...when puberty beats her up and bleeds her nearly dry. When she becomes ill. When she has to hear, "oh, I'm so glad it's not cancer or AIDS or something" from people who are supposed to understand how close to death she already is. Yes, I'm sorry for that, too. I'm sorry that she had to live so close to it for so long - because even though we are not dead...that was damn close. And she/ I did not deserve it. It's hard sometimes, to let my memories play. I want to pause them, like I can stop in retrospect what I had no power over at the time. At least...I'm glad to be my age today. Old enough to look after the girls who have not grown up and love them enough to be angry.
So much for not talking about it tonight. I guess I don't want to talk about the details; that's what I meant. I think I'll save the details for a private entry.
...You know, I really don't want the message in my inbox with the subject line "you are great" to be spam. I think I'll take the compliment and forget the sales pitch. It works better that way.
I want to talk about Rogers before I go. I'm skipping around subjects so oddly tonight; it seems almost silly to go here, too. But I want to, and that means something, so I'll honor it. Beth Ann left me a beautiful message (guess what! you can leave one, too!) about equating what Rogers is to me with what faith is to her. And it's almost odd to say this with an ankh cross at the top of my journal, having titled yesterday's entry based on a song that sometimes means Deo to me and other times means Rogers - but - that is partly true. In some ways, Rogers was my temple. It's difficult to explain, I guess, because what I believe about "God" is not something they taught me. But they were...(are?...) my world, my heritage, my upbringing. What I know about the world and life and people, I know because of Rogers, and from that information I draw conclusions that grow into things like spirituality. So it seems connected. I wish that calling it "home" conveyed more of the full reality to people, but sadly most of us haven't had the family it would take to understand. I don't doubt, for instance, why it's so difficult for my parents to comprehend what went on for me at Rogers - it's not something they've come close to experiencing.
I think what I'm trying to say is that I have faith, too. Or faith still. I have carried with me every beautiful understanding I was given and gained more since I left. I don't feel stripped of my spiritual side without them, but I do have very strong connections between the love I received there and the Love I believe in... It's more like...they have been fellow pilgrams on my quest, and although the the truth of what I learned there stands up without them, it's an incredible loss.
So incredible...so dreadful...that I'm thinking of throwing myself to the wolves again. By which I mean starting up the call-making and the letter-writing once more. Saying again that they mean so much to me, that I would love to hear from them, that I haven't gotten over leaving. Saying I am healthy enough not to create sick relationships, and I am human enough to need this with such hunger it seems insatiable. I know that I will experience pain when certain people don't respond. But I still have this damn hope ring on my finger, and it's interfering with my life.
Perhaps I'm reading too much Tolkien, but I swear - the ring has a will of its own.
chord
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