Showing posts with label avoidance. Show all posts
Showing posts with label avoidance. Show all posts

Sunday, March 4, 2012

MRI




Here's a picture of Jamesie in the hospital. No matter what happened, James always kept his smile. We were very proud of him.

I had an MRI on Friday. I showed up late, despite the two or three phone calls I'd received (and screened to voicemail) telling me I needed to be there at 11:45 to get prepared. I showed up at 12:20. I was in court in the morning. However, I made no effort to leave early and committed to the hearing knowing full well it would probably cause me to run late. I'm wearing a suit and carrying my briefcase, trying to look for all the world like someone who does not belong in a hospital. I sit in the corner and whip out my phone in a studious attempt to pretend that I am somewhere else. I spend mere seconds filling out the paperwork, scrawling N/A at the top of the form and running a line down the length of the page, hastily sketched initials in place of a full signature. JMS, scribble.

I'd been tacitly avoiding the whole premise of the MRI since my doctor first told me I needed to have it. Of course I've had MRIs before- especially brain/brain stem MRIs. To get an MRI of your inner ear, there's really no other option. But not since James, and not so near where he had his, tucked away in another corner of UT Southwestern's medical center. Like his doctors, mine works and teaches at the medical school, a member of the small cadre of doctors who treat my particular condition. Microtia is just common enough that you can find at least one good doctor in most cities with a medical school. They all know each other, and are a welcome respite from run of the mill ENTs who often have no idea what they're talking about. In the waiting room there's a young boy who looks like he's on his second or third surgery. I remember the stages. This is what I worried about when Kara was pregnant, that James would be born like me. It's generally understood as a congenital, not genetic, birth defect, but the recurrence rate is much greater amongst family members than the general population. I had them check his ears at each ultrasound and still remember the palpable sense of relief I felt when he was born, running my fingers over his little ears and nose. Perfect. It never occurred to me to worry about cancer. I didn't know any better.

I consider asking my doctor whether or not he knows any of James' doctors. He would have to interact with pediatricians frequently, though I can't imagine he'd have much cause to talk to the oncologists. He called me James at our first appointment, mistaking my first name for my actual name. It's a common mistake and something that never used to bother me. I often didn't even bother to correct people I didn't think I'd see often. I always correct people now. To his credit, he either remembers or makes a note because at our second appointment he calls me Matthew. I like him already. He's mastered the low-key, candid approach that marks good bedside manner, at least for me.

I know the MRI is coming. My hearing is a little worse and I'm experiencing tinnitus in both ears. I'm also overdue as I neglected having one done after my last surgery three years ago. There really aren't a lot of other diagnostic options. There are any number of potential causes, from little cysts to something blocking my ear canal. Brain tumors are far, far down the list. The most likely cause is nothing in particular. I pick the last date proposed to me and tell no one but Kara.

The truth is just going over there bothers me a little. I take the same exit we used when James was sick, drive under the walkway that links Children's to the parking garages, the one with the Starbucks nestled awkwardly at its mouth. Past the garden where we had James' last photo shoot. I know where each and every one of his rooms is in the building, I remember every view. It's strange coming here for anything else, even though I'm going to another part of the medical center I feel the old routine tugging at me, wondering which garage I should park in and hoping my weekly pass hasn't expired.

Even though I'm over thirty minutes late, there's no delay in the MRI. If anything my tardiness means they're rushing me. The nurse takes my lateness as ignorance, because she's lecturing me sternly on what I can and cannot have on me during the MRI. I don't bother to tell her how many times I've heard the lecture or that the last time I heard that lecture my only question was how they would manage my son's IVs and needles during the procedure. He had three or four at the time. For his very last MRI, there was no lecture. It was understood that we knew. She's mad at me for being late and I give her no reason not to be. I rather prefer it this way, the less conversation between us means the less opportunities for me to remember. She flubs the first IV attempt because she picks the wrong vein and is a little too aggressive on the second. I mention that people usually have more success with my left arm and point her to the spot. She tries that and it works. My usual fear of needles is weirdly absent. I remember the way James started to squirm away from needles and nurses, his little body recoiling from being hurt again. I feel guilty.

The MRI is loud. My head nestled in a larger version of the football helmet like retainer that James had to wear. Though he was always sedated for his MRIs I can't help but wonder if the sound bothered him. At first it sounds a bit like a discordant orchestra tuning, all rhythm and no melody. Then a steady drumming, magnets whirring. They've added a mirror that provides a view of the window to alleviate claustrophobia. I appreciate that. I keep thinking of watching them take James back and the cheerful coloring of the MRIs at children's. I hope he slept through it. I hope he wasn't scared when I wasn't there to comfort him. As we walk out I catch a glimpse of my brain on the screens, looking just as it should. No tumor for me. I catch myself comparing it to James' last MRI, the tendrils of tumor wrapping around his skull, spilling down his spine. I wonder yet again why God wouldn't let us trade.

Afterwards I make my way to the doctors to confirm what I already know. The MRI looks fine, he hasn't looked at the full report yet but no worries so far. There's no reason aside from the one I was born with that things are getting a little worse. He even has good news. He points out that there's a new hearing aid on the market that could restore hearing to my bad ear. I make an appointment to check it out and am surprisingly interested, though it's hard to be interested in experiencing something you've never missed. He gives me a supplement for tinnitus that works for some people, though as he points out in a refreshing moment of honesty the only real treatment is to get used to it. I mostly have. I'm not all that worried about it.

I've been to appointments like this before, had these kind of procedures. Since James died though, it's like the only way I can view many things, including medicine, is through what happened to him. All the benchmarks set by childhood have been replaced with those few short weeks. It makes it difficult, because I catch all the memories coming back to me each time, though I know they shouldn't. These are unrelated things, I tell myself, but still I find myself subconsciously making links, drawing myself back there. It's yet another symptom of the post-James world. Nothing is the same, everything is different. I am different. Yet as I go through all of these different experiences, I do think things are getting better. Going through James related things, like an MRI identical to the ones he had, is not easy. But afterwards I feel better. I feel less afraid of them than before, more convinced that the new benchmarks don't necessarily represent inescapable lows. I feel less avoidant, less inclined to nearly blow off an MRI or show up thirty minutes late. Different does not have to be worse. I take comfort in that.

Thank all of you for your continued thoughts and prayers.

Monday, July 18, 2011

Day Twenty Six




When Kara was pregnant with James, I wrote him everyday. Most days I curled up at the end of the day and wrote to him in a gmail document, snippets of of the day and of him. Some days I just jotted off notes on pieces of paper and added them in later. I told him what size fruit he was every week, what we were learning about him. I told him about all the fun things we were going to do together. We called him the bean before we knew him as James. We got the idea from his first ultrasound, when his beating heart surprised our Doctor. He was ahead of schedule- the boy was always precocious. I thought he was a girl. Kara knew better. When I wrote that, I wanted to give it to him one day, on a birthday or some other milestone. I wanted him to take it with him and know how we loved him totally from the time we first knew him, before we gave him a name or even knew what kind of name to give him. That I thought of him everyday.

Sometimes, I feel like I'm still writing that letter to him here, pausing each day to write. We just won't get a chance to talk about it, James and I. What I hope and pray is that I'll find another way to get that letter to him.

We are still doing. Doing this, doing that, doing anything but. We sprang awake this morning- late but eager- and began the day with a barrage of phone calls. Schedule time with the funeral home. Schedule a time at the cemetery. Call charities to explore options. We were in the car for the funeral home within an hour of waking up.

I wish I could say our funeral home experience went well. It did not. We arrived were handed off to a director in a back room. He fumbled immediately by spelling my name wrong on the death certificate, then following up by asking us what education level our eight month old son had attained. Why "less than eighth grade" wasn't simply checked is beyond me. We were not pleased. We couldn't look at caskets. They didn't have the baby ones there. We looked at a brochure, full of gingham monstrosities and designs which should never exist. He suggested a plastic one for $600. We were not amused. The whole catalog shouldn't exist. We selected the least offensive, poplar wood and not very baby. In our minds, James never seemed like just a baby. He was a whole person, with a personality and an identity apart from merely being an infant. He was James Camden Sikes, our son. He was not just our baby. After we selected, we were told we couldn't get it in until Thursday- after we'd scheduled James' service. The details were sketchy, we scrambled looking elsewhere, pitched a fit, I pulled the lawyer card and lo and behold, problem solved. We received a discount for our trouble. As if it mattered.

We then ventured out to the cemetery- the one in Denton where Kara has family. We'd liked it the most yesterday, and we felt good about it. The environment was totally different, in a much better way. No corporate offices (as one cemetery salesman told us, "This is the very best of our 600 cemeteries") just an old country woman behind a desk, with a map of spots. A fraction of the cost. We were shown a few spaces and finally chose a block of three by a newly planted tree where we could put a bench. We bought all three. James will take the middle spot. We'll follow. Once upon a time, we asked each other but never answered "Where would you want to be buried?" Now the answer is obvious and simple. "With James."

We went home and our families were over. We burned time sorting through decisions. Pallbearers. Clothes. Songs. Pictures. We did all of that and we managed not to deal with a lot. We ate. And here we are again, another day spent. We'll run out of decisions, plots to buy, and things to plan eventually. We'll have to deal with emptiness, with the lack of James. But not yet. Florist in the morning. Always something.

Thank all of you for your e-mails, comments and prayers. We are horrible at responding, but we read each one. We are truly grateful for the impact James has had on the world.