Now that I’ve picked a title, I have the song ingrained in my head. I can already tell it’s the kind of earworm with some serious staying power. I’m even uploading it to my iPod, because why fight the inevitable?
It’s not just random cruelty, this attempt to infect your brain with the same un-dislodge-able song as is in mine. I really have had some sort of very slight, but fundamental, shift in my thinking just lately. Since leaving the hospital this last time, I think, because it was the first time that I left with a firm backward glare and a determination that borders on actual hope, not to have to return there any time soon, or perhaps ever again.
I need to stop being sick. I need to stop giving my loved ones a brief little jolt of worry whenever they see my name on the screen when their phone rings. I need to stop being a passive player in this overwhelming series of events. I need to start being me again – and if the former me is unavailable, then I need to figure out who the new one is.
There’s no magic trick here, no wand to wave or incantation to whisper. I can’t undo the horrors and fears and hurts of the past few months. I can’t ignore that which is unpleasant, and I can’t make promises that things will be easier from here on. Hell, I can’t even adequately figure out a way to wish, in my head, that things will be smoother for a little while.
Some of this means that I have to give up and let go of some things. Like that desperately coveted family vacation… I so, so very badly want a week on a tropical resort, with beachside massage and a gentle beach for the kids and hotel rooms overlooking the beach (are you sensing my theme, yet?). And I can’t have it. Not this year. The money just isn’t there – even with health insurance, the copays and deductibles and not-covereds are astronomical – and my health is still simply too unpredictable to do crazy things like reserve a room or book a flight. Maybe – I hope – next year… but I need to stop dangling this nonexistent carrot in front of my nose and accept the realities of my circumstances.
I have to give up, as well, on any glimmer of hope that a lawsuit might put things right. I’m still going to make a few calls, try a few more avenues, but for reasons both profound and ridiculous, acceptable and utterly infuriating, the legal system just is not going to help me here, because I don’t know enough about it and I don’t have enough fight left in me to figure it out.
I have to give up my pre-March baselines and concepts of “normal,” as far as both body and mind are concerned, and start instead thinking about what my maximum levels of healing can be. Just how far can I rebound from the psychological traumas inflicted by a single day’s discovery of a week’s worth of coma and surgery and life support and ventilator and hysterectomy and VAC and sepsis and so on? When will I reach a point at which I look down and say, “OK, this has to be good enough. I can’t expect my body to recover any farther on its own,” and then try to figure out the next step?
But it’s not all bad stuff. Getting back to my life also, and predominantly, means stepping up and returning to more of my former self, to the extent possible. I can’t do laundry, still, and even dishes are beyond my capacity at this point. Housework in general took up a big chunk of my daily activities, before March, and a lot of that is still beyond me… but there are some tasks I can attack, some projects I can take on. There are many things that I have allowed to slip away, sometimes into the hands of others and sometimes just slipped away altogether. Like, I have begun filling out various paperwork on my own again, instead of allowing Willem to do it all – that might seem inconsequential, but it represents a fundamental aspect of my personality pre-coma which has faded out. Like, my desk has become a model of disarray, and I can and will organize it, along with my filing cabinet. Like, I have all but abandoned my online presence, blogging only sporadically, rarely visiting message boards, using Facebook as a ticker-tape read of my ongoing crises but not wandering past the first page of Friends’ posts. These were major sources of communication and support and just human contact, filtered through pixels and modems but contact nonetheless, and I miss them.
As the fall looms, I realize that it’s just a matter of weeks until Willem and the kids go back to school, and it’ll be just me and Isaac at home. He’s a sweet, sweet boy, with a smile that simply forces you to smile back, but he’s not big on sustained conversation just yet. I will be alone, that is inevitable, but I don’t have to be lonely. And the way to avoid this is to start taking deliberate steps forward, even – no, especially – when I feel small and scared and confused and want to crawl back under the covers.
For weeks now, I have been able to smile for my children. A genuine, I’m-happy-to-see-you-and-I-really-love-you-and-I-mean-it smile, every day. That has wrought a tangible, obvious change to the household. I’m able to allow Willem to see me at my worst, to see the tears and whimpers and breakdowns, but I’m also doing better at showing him the smiles and affection, too. I’m trying to spend more time with friends, and during those times I’m trying to get them to talk, instead of once again cycling into my own neverending story of poor health and damaged psyche.
And, tonight, I spent two hours sending messages to various online friends, responding to notes I had received in the past several months but to which I had not replied; it just felt like too much, somehow, even to simply acknowledge the notes sent to me during that awful spring and early summer. It hurts less, now, and it just felt like it was past time to touch base. The next step is to get back into the message boards… soon, but not tonight. It’s late, and I’m already feeling a bit overwhelmed and tired. But, for once, in a good way.
I can do this. I’m still in here, somewhere.