what is and what should never be

Yesterday, I was in a very dark place. I was (and am) beaten down by relentless bowel symptoms that eclipse all others and continue to monopolize every day.

What food to buy, how to prepare it, when to eat and * whether to eat it, how much to eat and how much to blend it, what digestive aids to use — bitters, ginger, HCl, enzymes, castor oil, Digest Zen, massage — how to move it through, what medications to take and in what combinations, at what times, how to ameliorate the side effects, how to improve my bathroom situation — padded toilet seat, squatty potty, head rest, neck brace, lubricant, pillow — worried that I’ll be an 80-year old trying to get up and down off the floor to give myself enemas, worried that my husband will be giving me enemas, scouring support groups, researching surgeries, praying for someone to cut out my colon and replace it with a bag… Fearing that this will kill me. Or that it won’t and I’m trapped in this body with no easy exit.

Today, I saw this memory and it immediately brought tears to my eyes. At this point, I’d been sick for almost 3 years and mostly bedbound for almost 2. I was so, so sick. I shudder to think of it. Sure, I could still eat solid food and poop, but only if I managed to get up and leave my room. They were the most terrifying years of my life. A privileged “terrifying,” I realised even then — I had family, a home, resources — but gratitude didn’t quash the symptoms, fear and confusion about what was happening to me.

It took Herculean efforts on the part of my mother, husband and friends to get me to California to see Dr. Chia (where I took this photo) and it felt like the effort might kill me. But the emotion from seeing the ocean when I truly thought I never would again (shit, even the feeling of seeing Seattle as we drove to the airport) was completely overwhelming and magical. And, also, very sad because I didn’t know how or if it could happen again.

Anyway, I needed this slap in the face today to remind me of what was and what is no longer my situation. My illness now is structural and neurological. It’s just as scary and uncertain, but I can take my dog for a walk with my mobility scooter and cook some soup and talk on the phone and watch a movie. Without a pandemic and if my gut behaved, I could even have a social outing.

From 2012 through 2015, I white-knuckled-it through every single minute of every single day, concentrating on taking the next breath and making it to the next hour. I still find it exhausting trying to keep my body functioning, but it did get better, just like my Mom told me it could. I’d once had a rare better day with less poisoned pain, fewer flu symptoms, an uptick in energy and she said, “If it happened once, it can happen again. And for longer.” I clung to those words like a drowning person, trying to swim up towards the light.

For everyone in this situation, for people with severe ME, for all the long covid patients, it does get better. Or, at least, things will shift and change. Grab hold. Hang on.

Title Credit


8 thoughts on “what is and what should never be

  1. Jak says:

    I relate so much to this and really needed it today, so thank you for posting.

    I’m having a bad ME patch and am feeling scared (will it improve again?) and sorry for myself (I’d forgotten how lifeless, poisoned and ill bad ME makes you feel). I needed a reminder of how far I’ve come and to be grateful I’m as functional as I am xoxo

    Liked by 1 person

    • Oh god, that is so scary. ME IS a lifeless feeling, a sickness that feels like it might never leave. I’m so sorry, Jak. I’d hoped that those days were pretty much behind you, but it will always be an ebb and flow with our immune systems, it seems. I know how much you do for others and how long you’ve been doing it. Maybe this will be a short-lived reminder to scale back. Thinking of you! X


  2. This is completely epic. Please keep going, we need you xxxxxxx

    Liked by 1 person

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  4. […] der Zee, Naomi Whittingham, Jamison Hill, Jessica Taylor-Bearman, Nevra Liz Ahmet, Ketra Wooding, Elizabeth Milo, Whitney […]


  5. Sage Lazar says:

    You are SUCH a talented writer!!!

    Liked by 1 person

    • After calling an ambulance this morning, I’m having one of those days where I wonder what it’s all for, why I’m still here fighting this exhausting fight. This one comment from you is just what I needed to give me a drop more fight. Thank you. X


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