If I don’t have brain symptoms (which is the true limiting factor to my writing this year) and I start to post something about my illness, about my days, about my lack of coping skills, I invariably think, “You aren’t bedridden, how can you complain? You are able to feed and bathe yourself, are you really going to bitch about how difficult your life is?” Because that’s what I want to do more often than not. Complain. Vent. Rage against the world. And perhaps make some tiny bit of sense out of this existence and give myself some breathing room.
I’ve been so bottled up, I have tears threatening to spill over every day. So, I am going to write about today and preface it with this: To my friends that can’t get out of bed or watch TV or eat whatever they want… to those of you that haven’t left the house in years and don’t have some of the things that keep me sane like my dogs and my husband (I probably should have led with the husband there), I think about you. I shudder to think about you. You inspire and humble me with your resilience and I wish I could change things.
I want to write about the small, but significant choices I made today. It’s a short story and the end of it is I went to bed and sobbed into my pillow because my therapist said I should. He said crying is a primal emotion that serves a purpose and I should let it out, so I did. I don’t know if it helped. I feel the same as I did before, only with swollen eyes, but I appreciate that he gave me permission, for lack of a better word. He’s always telling me, “Get out of your head, stop trying to rationalise everything, stop trying to make an action plan for everything, stop the black and white thinking.” But if I’m not analyzing, organising, planning, executing, succeeding and then second-guessing everything I did, then who am I? That’s a rhetorical question.
I can’t remember the last time I went in a grocery store. Many, many months ago with my husband, I think. Maybe even last year. It’s a big deal, it takes planning and guts. We had a 10% off promo that needed to be used today and the store was a 4-minute drive. They have a deli and I decided that driving there and buying deli food would be less energy than trying to cook something. After all these years, I still marvel that these are the sorts of choices we (those of us with energy deficits) have to make. Driving, if my brain is operational, does not use up a lot of my energy, but washing, chopping, standing at the stove, stirring, whatevering… It’s exhausting. So: drive, park, the deli is right inside the door, get food, come home. Scary when I’m having a difficult health month, but easier, I decided, than the alternative and, if I’m not pushing myself too hard and crashing, then who am I? Again, rhetorical.
I’ve been beaten down recently by a 5-day migraine and bad sleep for months, wondering how to keep going through the motions of survival. In a nutshell, I’m pretty raw and small things feel harrowing. I talked to myself the whole way to the store: “You’re fine, you’ve got this, you won’t pay for this. Red light means stop.” I parked in a handicapped parking spot (with my permanent handicapped parking permit displayed) and shuffled to the elevator that goes up to the store. There’s a small stairwell, too, but I’ve never climbed it in the 4 or 5 times I’ve been at that building. I hear someone yelling across the parking lot. YELLING. Not nice yells. A woman near me says to me, “She’s saying she doesn’t think you’re disabled.” I replied quietly, “Oh, I am” and she gave me a kind look as she started up the stairs and nodded at the elevator as if to say, I can see that. But, also, look at my face! Can’t you see it? How can they not? But they can’t. Maybe in Seattle in November everyone is grey-skinned, sunken-eyed and haunted-looking to a certain extent.
I thought that was the end of it, but the woman in her car was still hollering. She’d stopped on her way out, blocking people, so intent on getting an answer that she’d rolled down her passenger side window and was shouting, “DISABLED? DISABLED? ARE YOU? HELLO? ARE YOU DISABLED?” It was aggressive and accusatory, not inquisitive or, god forbid, compassionate. I had already nodded yes at her, but she continued on. I mouthed, “I am,” but she couldn’t see or it wasn’t good enough. I started to feel very weak because I can’t sacrifice the energy to go talk to her, I can’t sacrifice the energy to project my voice, people were staring now and I felt defensive and emotional and the heat was burning up my chest and, before I knew it, I roared YEEESS! and immediately felt dizzy, immediately had a sore throat. Legitimately — a sore throat that’s still here tonight. We people with ME don’t roar. And, oh, how I miss it. How I miss being enraged and having a good old screaming match, replete with stomping off and door slamming. I used to be really good at that.
The woman shouted back: GOOD! and drove away. It echoed around the closed underground lot and made me feel very small.
I tried to tell myself her heart was in the right place, that she was looking out for disabled people and that I’m glad there are ballsy watchdogs like her in this world… but it didn’t stop the resentment from welling up. She caused this embarrassment, this upset, she caused me to yell when my voice is so weak. And she’ll be fine, she won’t pay for this interaction because she wouldn’t have initiated it if that was a concern. I started silently blubbering in the elevator. I walked to the deli weeping, I ordered the food while sniveling, I wiped away tears while paying. And I bought a pint of chocolate hazelnut fudge ice cream because fuck that lady.
When I went to leave the parking garage, I realised I hadn’t gotten my parking ticket stamped, but there was no way I could walk back to the elevator and into the store. Another example of the small, but soul-eroding kind of choices we have to make. I was so beyond my safe energy expenditure that I worried about not making it home. It was too far to go back and I had to save my steps to get in my house. So, I paid for parking and it negated the 10% off promo that inspired me to venture out in the first place.
When I was putting the things into the fridge, I did it sitting on the floor and when I stood up, I bashed my head so hard on the corner of the counter, that it drove me back to the floor, my vision whited out and stars burst and birds chirped around me. The migraine, which I’d just quelled yesterday with my infusion medications, burst back onto the scene, shooting cyclical stabbing pain through my left eye. That was it. I took my therapist’s advice and went to bed to sob into my pillow.
I do feel a bit better now, so maybe it did help. Or maybe it’s because I’m writing for the first time in over 5 months. Or maybe it’s the chocolate hazelnut ice cream.
I’m sure everyone with M.E. can relate to this EM – I know I sure can. I remember my parents being in Australia for 3 weeks and the day they came home I wanted to go to the shop to get them essentials like milk so they could make a snack after their 27 hour journey. I was so ill with ME back then, but dragged my arse to the supermarket. There were no disabled spaces left so I parked in the space nearest to the door which was Mother & Baby, displaying my disabled badge. I was screamed at by 2 women stood nearby that I didn’t have a child with me, to the point where I burst into tears and had to be calmed down by the store manager. I was so ill by the time I got home I had a seizure then spent 2 hours vomiting.
I’m so sorry this happened to you. It shouldn’t have. It’s no-one else’s business – you had a legitimate badge and the right to park in the disabled bay. That should be enough.
I have ME and I could relate so much to what one seemingly simple task can do to us. Raising awareness is extremely important. Thank you for sharing this experience.
Stupid people can be so stupid. I’m so sorry you ran into one of the stupider versions of what passes as a human being on a rare outing. I am going to pray that God sends you more angels when you venture out, more of the kind variety. And there is a reason they include a good cry and a carton of ice cream with a spoon (no bowl allowed) in a lot of those feel good, romantic comedies. It might not cure what ails you, but it does somehow help to clear out the bilges. Don’t you wish life was more like those movies?
Keep fighting the good fight and write when you can. I love your writing – it is infused with humor when it would be so easy to be bitter. Love you!
Ugh, this makes me so irate. I also somewhat, kind of, understand where her thoughts were coming from but to be so ridiculously hostile and make a such a scene. I wish I could have been there to be your bodyguard! Sending love!
I roared a few months ago- it was exhausting, but it felt good, too. (A very similar situation). It felt like I was clawing back the tiniest bit of agency in my life. A bit like ‘Ha, world! You can kick me as much as you want, I’m gonna keep getting back up!’.
Oh E Milo, what a day and what a horrible encounter with that human lady. Maybe when they eventually plug us all into computers, our robot selves won’t be so cruel and maybe just maybe the human race with become overcome with compassion and empathy. Just maybe. Until then, all I can say is I hope you enjoyed the ice cream.
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Oh.,I so understand this! No longer bedbound but oh my goodness me, it’s still so limiting and BORING!! And the guilt never goes away. Try throwing balled up socks, they’re not too heavy but still quite therapeutic! 😉 Rest and mend. Busybodies need to know limits too. 😉