Thank Gods

It’s ok, Colette, we’ve got this!

Something happened. I am so disgusted and shaky that it’s hard to write— but for good reason. Lately the brain fog has become much worse. I’m still getting sick and then bedridden for about a week at a time followed, happily, by a week or two remission except recently, the brain fog is continuing after the sick period into the sweet remissions. It’s scary and often humiliating and it effects my self esteem. Sure, I double book plane tickets, I temporarily lose my phone about twice a day but that’s not pathological, right? I use my Apple watch or someone else’s phone and follow the reassuring ping, ring, vibration or dreaded silence. It’s hard to believe I once graduated at the top of my class and it was me, this me! Not only did I show up to class, I read, took tests, wrote papers and I loved it. Now, I am, let’s just say, challenged and no, I’m not drunk.

About 12 years ago, concerned with how I was drinking, I quit, with much support. It seemed all of the other mommies around me had become a niche breed of wine connoisseurs (red, white or pink) but I doubted I could drink and parent with integrity. I’d forget to pick up my kid, I knew I would, afternoon “naps.” Something shifted. The party girl wasn’t cute anymore and was potentially dangerous. I couldn’t seem to have just one so I decided to have none. I envisioned myself a hungover mom hosting Christmas’ from bed, feigning food poisoning. As you can imagine, abstinence hasn’t always been easy but it’s been worth it.

One of the greatest rewards of laying off the booze was that of being a present and loving mother. Gradually, developing a sense of dignity, I was on my way to becoming a grownup. The self-absorbed party girl prima donna image has been shed slowly and has resulted in a degree of respect from my family, my husband and his family (at least more so than before). Even if I remained unliked by some, I was improving. If I told you I was going to be somewhere, I was there, typically on time with with the thought of what to give instead of what to take. I was, as they say, present.

She stops drinking, gets her shit mostly together, gets her Masters degree, becomes a teacher, is on every school committee, has genuine friends and dinner parties and then… what happens next?  She gets sick. So sick that it lasts forever-or it has so far. Talk about feeling like a huge, chronically ill asshole. Don’t take offense but according to studies, ME symptoms are reported to be just as bad, if not worse, than those of cancer. I know that’s hard-core but my new mantra has become -it’s none of my business what other people think. Easy to say but hard to internalize.

If you’ve read my previous blogs you know what happens next. The United States of doctors and diets, herbs, tinctures, oils, meat pills, meat powder, supplements in every form, vitamins, probiotics, prebiotics, juicing, no gluten, avoiding dairy, limiting sugar, one of everything over the counter and as seen on tv, no medicine, exercise, no exercise, urologists, neurologists, neurosurgeons, chiropractors, gynecologists, acupuncturists (kinda helps), gastroenterologists, pain specialists, rheumatologists, functional medicine practitioners, cognitive behavioral therapists (online and in person) psychiatrists, osteopaths, ents, concierge practice doctors, and most recently, a renowned neurosurgeon for cervical cranial instability for which he prescribed one of those neck braces that …. I’ve had a bit of success with the neck brace, though nothing close to a cure. As of right now, treating cervical instability for ME has unveiled some promising success (google Jennifer Brea).

Have you ever seen the pit of something like a peach or a nectarine? That’s what I feel like when I’m sick. A pit kicked down a dirty, dimly lit hallway. Finished.  Castrated, de-limbed, hollow, powerless.  

In casual conversation the term brain fog sounds like you smoked pot or didn’t get enough sleep. Lately, it’s gone from losing my phone to forgetting whole units, whole events, recorded on my calendar and triple checked with reminders. Sometimes, I go to the wrong place or lose brilliant epiphanies in mid-sentence. I’m afraid to mention these lost chunks of time, names, words. If someone was murdered I could be a suspect. Where were you on that dark and stormy night? Then I’d be on a tv show about the wrongly accused. This doddering mind frustrates my family, my friends and people in stores chasing after me with my forgotten bags.

Here’s why: a few months ago my sister, a huge supporter, asked me to meet her in Greece. She was flying to a remote island for a wedding and thought it would be fun to meet and make a short trip of it. My husband, a lawyer in the travel industry graciously offered to plan my travel. As the Greece trip approached I grew concerned though determined to go. The week leading up to the trip was bad.  I’d spent several days in bed and by the way I hate bed. Bed, THAT’S a bad word. The departure day came and I lucked out. Feeling quite healthy and super grateful, I arrived in Athens for a six hour layover. Plenty of time to regroup, window shop and catch up on emails before my next plane to fantasy island. Familiar with my hinderances, I consulted a ticket agent to confirm that my next flight was in six hours time, definitely six hours check double check. Triple check. We’re good. About a half hour into dragging my suitcase around the Athens airport, I decided to unburden myself and check my bag. It was cheap and one way not lose it! 

A passport was required required a passport was required a passport my passport where the fuck was my passport? I’m almost 50 should I call my husband? He’s gonna kill me. No he’ll help me he’ll just be DISAPPOINTED. I won’t be able to leave Athens. I won’t be able to meet my sister. I don’t ever want to leave Athens. I may never see my sister. I could runaway, start a new life, create a new identity. First, the lost and found, nothing. The airport police, nothing. The bathroom, nope, then back to the lost and found, still nothing, then to the ticketing agent, last chance. Watching her shuffle through passports, my heart started to sink, what would my new name be? Wait she’s asking my name and looking at me and back to a picture, a passport picture, MY passport picture. She has my passport! I am flush with relief and gratitude. I want to hug her but I am embarrassed.  

I am tired of backtracking. I am tired of retracing my washed away steps. Such fuck ups have become common and have conditioned me to grow quieter. As it is, I am hesitant to even blog about this and rarely talk to my friends about my illness. I’m aware that this retreat into myself is potentially dangerous but I’m also anxious, as telling the truth feels so garbled sometimes. I’m ashamed I think. About a month ago, I told a close friend how I was feeling. It was a risk. Her response was “Oh Jesus.” That’s it, “Oh,Jesus.” Honestly, I’m not sure I could come up with anything better. I’ve been told not to go to the hardware store for milk but sometimes it seems there’s no milk no matter where I go. It’s just gone. It doesn’t exist.

The tiny Greek island was spectacular. It’s just like the pictures but better. Flying over the Aegean sea, you’d never know I was sick. I looked like another privileged white girl. What you can’t see is this elusive and marauding disease that pulls me far away from the moment. I’m not stupid, I’m not an idiot, I’m not careless or mean and I’m not crazy. Nor am I sniveling. I’m just growing kind of sideways in a linear  world of which I was once a part. So I’m asking you but mostly I’m asking me, for permission to be as I am, no longer a runner but a walker and Jeopardy’s fine but I need a time handicap.  I don’t like making so many mistakes but I am not so important. I doubt any of this will matter in 100 years.

The trip turned out to be extraordinary. I had no idea the Greek islands would be so exquisitely charming. The people were gracious, the views kept my head spinning, the architecture, literally other-worldly, lauding not centuries but millennia, the blue and white repeating, the Aegean Sea consummately engaging the sky at all times and at night, full of stars.

Greece by Day

On the last day of the trip, I got sick. I don’t know why. Maybe the spontaneous hike in Delos wearing flip flops (don’t ever climb Delos in flip flops), the gluten, time change catching up, virus checking in, spine rearranging imperceptibly from moving my head to see the birthplace of Apollo? I don’t know. May never know. But TOTALLY worth it, a great five day run. I didn’t lose my passport and I only lost my room key once. Efkharisto!

1 thought on “Thank Gods”

  1. Well, Collette, all I can say after reading your blog is, “Krio nero, parakalo”–from my hippy dippy days, many years ago, on Ios. Don’t know if I’ll ever get to Greece again, due to this crappy illness. I’d be lucky to make it to Nancy’s Greek Restaurant, 5 minutes from my house. I just wanted you to know your blog is not going out into the void. I’ve been reading, and enjoying, it for a few years now. You may well have brain fog, but you still write beautifully, and with a sense of humor, which is essential when dealing with ME/CFS. I’m curious about whether you’ve been helped by Dr. Bonilla, and if you still go to Stanford for treatment. Like you, I’ve tried everything under the sun. In my case, nothing has helped. Not acupuncture, not saline infusions, not gamma globulin, or antivirals used for AIDS, or eating vegan, or not eating vegan, or injecting myself with B12, or, or or, on and on, ad nauseum. I’m sick of the whole thing, and of dealing with it for over 20 years. Now, I just drown my sorrows in Valhrona. Or cappuccinos. Neither of which is recommended for ME, but, frankly, I don’t give a damn.


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