Never quite better

Testing … Testing … Is this blog still on?

Good grief it’s been a long time since I sat down and thought about anything more than what needed to be handled five minutes ago. Everything’s the same. Everything’s different. I have had so much on my mind during the past few months, I hardly know where one thought starts and another ends. It’s a blur.

That the pace of life continues to speed up as it approaches the future should surprise no one who spends their days with  small children. I keep putting off mopping my kitchen floor — which is sticky from so many dropped morsels — because I can’t decide if it is less futile to do it on Monday, so that it is clean at least one full day before my child comes home from school or to do it on the weekend, when there are more people about to help out (and help mess it up immediately). There is no end to laundry and dishes, which I can literally never get to the bottom of. Even as I do both tasks daily, I haven’t seen the bottom of my sink in months. There’s just no time or energy in me to do the multiple loads necessary to keep up each day. How do folks with team-sized broods do it? I’m exhausted.

Time and energy. Yes, that’s been in short supply this spring, which in the desert started with increased pollen counts in February because I am the universe’s cat toy. Pollen season hasn’t been this hard on me in years. ERs, immune-boosting prescription drug cocktails (mostly of the nauseating steroid variety), and weeks of bedrest have been the hallmark of the past three months. Naturally, as pollen counts soared near a 12 on the 12-point air quality scale, the nightmare of food allergies nearly pushed me right off a cliff. Down to beans, plain pasta, tea, and water these days. (Okay, there’s some occasional poptarts in there, because I’m weak … and fuck it.) I’d probably be as skinny as Kate Moss, if it weren’t for my stubborn Polish genes and the steroids the doctor keeps putting me on so I can, you know, breathe.

In short, this spring has been a real bitch.

The last time I remember feeling this bad was the spring of 2007, which is, incidentally, the same time I made some rather bold changes in my life, personally and professionally. I’m poised to do the same now. (Yes, there’s something I’m not telling you, but it will be revealed next week.) Something has to give. Actually, something is giving. My body. Things have changed during those seven years. One full-term pregnancy later, my body is healing at glacial speed, if at all. Bruises are taking months to heal. Seriously. Colds are morphing into very serious infections in record-time and then taking an eternity to come back from. The old tricks aren’t working and I’m all out of ideas. (So are my doctors.) I am slowly realizing this is the new normal. I’m getting older. The never-tiring immune system disorder is taking its toll.

I’m not going to lie, I’m angry and maybe a little bit scared. When I got diagnosed in my early 20s, I knew this day would come. I knew there would come a time when it was all going to get that much harder. (And, no doubt, this will not be the last such milestone.) It’s overwhelming. It’s unavoidable. It’s not fair. Now what?

The most practical plan is one many with similar illnesses employ — strict routine. And when I say “strict,” I mean drill sergeant quality. What they do is an exacting daily schedule factoring in meals, treatments, medication times, exercise plans, sleep, hydration, and more. Meals become precise nutrient delivery systems. Exercise routines are implemented to promote maximum success. The weekly schedule becomes over-blown with doctor visits, treatments, alternative therapies, exercise classes, etc. Like food, sleep becomes just another factor in the multi-variable equation. The mantra becomes: MAXIMIZE! As in, “Maximize results.” And, “achieve personal optimization.” It’s robotic.

I detest this plan. This plan is anathema to my spirit, my creative process, and to the spontaneity intrinsic to life. There is no joy to be had in life when your days and weeks are just a series of items to be ticked off a list. indeed, I find my friends who are so regimented to be kill-joys. Deviation becomes suspect and it’s pretty hard to schedule fun. (I mean, I already had to adopt a vegan diet, isn’t that enough?) But my rebellion, my dissatisfaction, my depression about the reality of my situation serves no purpose. I am not going to find spontaneous healing down some rabbit hole yet explored. (I’ve tried that already.) Now is the time for practical application of things that work — however incrementally. However mind-numbingly monotonous. However absent of joy. And the most frustrating part of this is that all that fastidious attention to detail and routine isn’t going to make me better. It’s going to make me functional. (There’s a difference.) I’m still going to be just as sick! And yes, that pisses me off. There is no cure for what ails me. And unless I want to continue to miss out on time with my family because I can barely breathe or am so exhausted by sickness (again!), there is only one thing to do. Submit.

Naturally, as my health is spiraling I am at a time in my career where all the dues are starting to pay off. Opportunities are coming my way. Exciting possibilities are tangible. But I keep having to cancel meetings and postpone projects. Is this how it’s going to be from here on out? Me constantly fighting my illness just to take the shot I’ve worked so hard to earn? Me lying in my bed, staring up at my ceiling, with so many ideas floating in my head I feel like they will spill out my ears? It feels like the universe keeps pushing me back down every time I stand up. And I have moments when I just feel like it would be easier to give up on dreams than to keep feeling them burning in my chest. It would be easier to just live day-to-day, checking off my health-routine list items, emptying the dishwasher, putting the kid to bed, making a grocery list — and repeat forever. Of course, the idea of giving up writing or any dreams I have therein makes me feel like going and finding an actual cliff to jump off. Not that I have the energy to. I can’t even muster the strength to sit at a computer for a half an hour. The futility is palpable.

This is why I haven’t been writing. I have had to carefully conserve my energy for just those tasks that are absolutely vital. I’m in survival mode right now. And the only thing I know for certain is that change is imminent because the way things are is not tenable. My only hope is that change brings some measure of relief.


  1. Thank you for your honesty. This post reminded me in this crazy harsh world that we are truly not alone, we all sometimes find ourselves simply struggling to get out of bed. I hope the summer brings you better health!

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