There have been so many days of rain this summer. Day after day after day of it. Rain so heavy it made our chimney leak. Rain so constant we have grown colonies of mushrooms on the lawn (which always makes me think of that Sylvia Plath poem and shudder). I have never seen the countryside so green at this edge of the year and I can not remember one as wet. Sometimes, when I can’t sleep for the unending chatter of the drops falling on the roof, or can’t leave the house because of the sheeting precipitation, it feels like it won’t ever stop. And yet, it always does. The skies open up, the edges of the horizon turn blue, the sun filters down in hazy rays through the clouds; it is bright again and I forget how it felt to be so damp it chilled my bones despite the sticky and suffocating humidity. In the midst of those grey and relentless days I’ve been living much inside my head. Sunshine makes it easy to avoid thinking beyond the next swim, the closest ice cream store, the joy of lying under the sprinkler in my bathing suit. In the rain I am forced to consider myself; to consider the question of my future and how exactly I shall answer it. It has been a strange month or so of growing and stretching in some unpractised and uncomfortable ways, and my skin feels tight and unhappy. Inflated with all this longing and yearning, I am getting too big for my current life.
There is one remaining test to be done before we are given a date for surgery. Just the one. In a month’s time everything will be ticked off; we will have jumped through all the hoops, and we will be, at long last, ready to move onto transplant. I’m not going to lie, sometimes it has felt like forever waiting for things to happen. Months pass with no forward motion, no new information, no results, no referrals, no plans. It can take up to twelve weeks between each part of the process before we move on to the next. It can be hard not to get angry sometimes; it feels ridiculous that something so important, so absolutely critical to me, can be delayed so often and so much. I try to breathe, try to remember that I am only one person, try to tiptoe that line between hope and despair. It has taken almost two years to get to this point, and, now that my transplant is so close to happening, I’m not actually sure that I’ve had enough time to figure it all out.
In this incarnation of my life I have always been careful not to plan too far ahead; not to think too much of the future; not to commit to too much and to always set up an out just in case. My yes is always accompanied by a caveat; health permitting. It changes so fast and I can’t control it. Even within the space of hours things can progress from (my) normal to critical. Because of this the future has always been an amorphous, tentative thing for me, and any plans beyond the small and domestic almost non-existent. In some ways this is self-protection; not just for my health but for my heart. Many things I can’t do. Many things I shouldn’t do. And even when I might be able to do them, there are far too many times I end up too sick to carry them out. Sometimes it’s easier to not to hope or plan for things than to deal with the disappointment when they can not come to fruition.
But my life is changing; now I have to consider the future, a different future, a future I have the control of. And I need to start preparing for it even if I can’t yet comprehend how it will be. My current life has a routine. It has well established boundaries and very clear limitations. And stepping outside of those boundaries when those limitations are removed is downright terrifying for me. I’m an imaginative girl but I am so far removed from the context it’s almost impossible for me to conceive of what a normal life will be like.
I jump from one potential future to another, one scheme to the next. I discuss these ideas with my friends or family, I do research, I write hundreds of lists. I have created enough fictional futures for a dozen lifetimes and I still haven’t decided what it is I want. If there were more parameters it might be easier to figure it out; but, within reason, there’s nothing to stop me from pursuing any of the plans I have dreamed up. I could do almost anything really, and yet the reality is, I can not do everything. And I am scared to the point of immobility. Because what if I choose wrong? I don’t want to choose wrong. I have already lost so much of my life, I couldn’t bear to waste any more of it by picking the wrong future. And it’s hard because I don’t know who I am when I am well. I don’t know what I will enjoy or how it will feel.
I Google “life after kidney transplant” but all it tells me are the medical implications, the physical changes, the critical commitment to medications, healthy lifestyle and diet, the regular doctors visits and blood tests, the potential for imminent failure but also the expected potential for a much more normal life. And that’s useful, it’s important information, I am grateful to read it; but though I search and search and search, nobody can tell me how it feels, how I might feel when I am through. Not physically, emotionally. Everything I can find is from hospital literature; what you can expect, how long you can expect it to last, what will be required from you. But there’s nobody telling me how it is to live it. How does anybody live it?
I feel twelve and choosing my new school far from home; I feel eighteen and choosing to travel overseas rather than go straight to university; I feel twenty-two and choosing to leave my hometown and make a new one. I feel all new and uncertain and scared and underprepared and almost, almost, almost free but not quite there. I’m not quite free and I’m not quite sure of anything.
I could study again, something new. Maybe do teaching or train to be a librarian. I could go back to painting or something else creative. Do I want to work for someone else or for myself? Do I want an easy job or one that challenges me? Do I want a job that makes money or one that makes a difference? Will I need a job with little stress to help protect my health? What is it I want to do?
If I am honest here, trying to figure out what I want to do is overwhelming. In the small hours of the morning, when I am still too often awake, I feel the weight of these decisions pressing in on me. And the truth is, I can’t actually make these decisions yet. We don’t know if the kidney will take, if the surgery will be successful, if I will improve drastically or if I will always be in some ways handicapped. We don’t know if this is the solution. We don’t know if there is more than one problem to be solved. Too much remains to be defined and that makes my planning problematic. My boundaries haven’t been prescribed and figuring out what I want to do is still an exercise in futility.
Besides, if the last seven years have taught me anything, I am asking the wrong question of myself. I think we’re all asking the wrong questions and, if the media, political climate, social malaise, rates of depression, anxiety, dissatisfaction and suicide are any evidence, we’re also coming up with the wrong answers. When I am lying sleepless in my bed, suffocating under these lives I haven’t lived yet, I force myself to breathe deeply and remind myself that what I want to do isn’t the important thing; the important thing is what I want to be.
There is a significant and incredibly meaningful difference between doing what you want and being who you want and sometimes you sacrifice the first for the second. It’s worth it, to give doing something up in order to become a better person. Or, in my case, to be given something and to become better, just better fullstop.
It is an incredible gift that I am getting. And I’m aware that calling it a gift might sound a little twee, sentimental or clichéd. But it is. I am getting a chance, I am getting the choice, I am getting an opportunity to do more, but, critically, I am also getting the opportunity to be more. And when I think about my intangible and still undecided future I want the decisions I make to be about the kind of person I want to be; not how to make a living but how to live.
Mary Oliver said it best, I think, in her poem The Summer Day:
“Doesn’t everything die at last, and too soon? / Tell me, what is it you plan to do with your one wild and precious life?”
And that’s what I am in the process of figuring out; what I plan to do with my own oh so precious life.
The title of this post is from another beautiful Mary Oliver poem, Starlings in Winter.