Still Looming

I’ve written before about living Under the Shoe, that pervasive sensation that any minute now, the other shoe will drop and everything you have will turn to ash. I’ve written before about how living in the moment and not planning ahead was an unlisted side effects of finding a medication that worked in getting my life back. And I’ve written before about how, at a certain point, I decided to trust it. To make plans for the future. To believe that even if this particular medication should stop being miraculous, there will be another one and therefore, it is safe to focus on life period, rather than a life that can be hijacked at any minute. And I thought I had it. Had convinced myself that I was in the groove, chugging along and bathing in this gorgeousness that is life with a medication that works.

And I am. Every day.

But it turns out that I am also very, very good at lying to myself.

This year has been an ongoing learning experience on how to deal with stress and RA. Thanks to hopelessly overcommitting myself with one too many jobs and the team recalibration at ShowUs Your Hands!, I have learned much about the impact stress has on my health and happiness and have gotten a lot better at prioritizing. But I still move fast and I still have entirely too many things on my list. So naturally, I started thinking about what this does for me, because you don’t cleave so hard to a pattern unless it gives you something. And sure, it’s partly related to my addiction to getting a lot done. Which is ingrained in my personality and something that’s always been with me, but the other part is firmly grounded in the time I couldn’t. How do you not revel in the glory that is the ability to do after so many years of not? And on top of that, there’s the specter of potentially more years of inability and being sidetracked by disease in the future. You do it now, while you can, because it is entirely possible that at some point in the future, you won’t be able to.

It’s not something I like to think about. Which you can tell from the switch from first person to second in that paragraph. Makes it safer, y’know?

So there’s that. I work too much because I’m still more than that little drunk with being able to work too much. And I work too much because I have a lot of plans and just in case I won’t be able to continue working too much, I’d better put it all on my list now. That last bit is more theoretical. Mostly, it’s because — did I mention this before? — I can work too much! And that just doesn’t get old, continuing to be a joy every day.

But there’s another thing, something I don’t talk about it all. Something I don’t even like to acknowledge to myself.

In August, I discovered the perfect gift for The Boy. I hurried to get it, didn’t want it to not be available closer to Christmas and his birthday. It arrived in the middle of summer, the time of bare feet, air-conditioning and spending as many days as possible down at the lake. I’d intended to save it for Christmas or his birthday, proud of myself for starting so early. And then when it was here and I was holding it in my hands, I was gripped by a powerful need to give it to him straight away. I resisted the urge for a few days and then gave in. And it was not just because I couldn’t wait to see his face when he opened it, because it was one of the more perfect gifts I have ever found for him. No, the real reason was something entirely different. Because when I thought of waiting the four months to Christmas, there was only one thought in my mind:

What if I’m not here then?

I tried to be logical, tried to go through all the reasons why it is as reasonable for me as it would be for anyone else to assume that I would be here at Christmas, but there was no penetrating the panic. Once those six words had entered my mind, they refused to leave. I wanted to be the person handing this gift to my love and I wanted to see his face when he opened it. The only way I could guarantee that happening was to give it to him that very week.

This fear has been with me before and usually in similar moments. I can buy tickets for the theater several months in advance, plan a book release next year or commit to a consumer proposal that will take five years to pay off. Somehow, I’m able to act normally with certain parts of my life, whereas others, small moments of intense importance, bring it all back home.

Coming close to losing your life, being given the gift of a second chance, is an overwhelming experience that consistently requires adaptation. Even almost 9 years after that first injection of Enbrel, underneath the routine of living this life I’ve created, it still feels very fragile and tenuous to me. Believing in the hope that the medication will continue to work, or another one will be able to take its place, requires attention. Having faith doesn’t just happen. It’s hard work.

I wonder if I will ever take it all for granted? I wonder if I’ll ever fully believe?


Vanessa Collins said…
Well said, Lene. I think many of us will relate to your writing on at least some level.
Wren said…
I can empathize--at least, to a degree--with what you're saying here, Lene. That looming "what if..." My RA is mostly under control and while I often hurt, it's nothing like it was during the first five years after diagnosis. And yet, with each sharp, isolated twinge of pain I feel in a knee, or foot, or wrist, I go tense, waiting for that small pain to suddenly transform and grow huge and overwhelming.

Fortunately, it doesn't. And yet, the fear of it looms.

I DO so get your apprehension, Lene. And yet I know, as you do, how many wonderful, new drugs are available to fight the RA dragon. We may not be able to vanquish him, but we CAN beat him into some submission.

Consider yourself hugged, k?
steph gas said…
it's interesting - your post resonated with me. i am newly diagnosed with ra (about three months in) and am set to start a biologic in two weeks. but i spent twelve long, dark, horrifying years trying to find an antipsychotic medication that would work. i finally did in 2012, but that feeling of waiting for the other shoe to drop is a constant in my life.