Holidays are the best. For this Fourth of July, I was fortunate enough to have not just the usual three-day weekend, but my French-company gives us a five-day weekend for this most American of holidays (viva la France!).

The Fourth befuddles me, though, mostly because I know enough about systemic racism and American history to know that there were thirty two thousand four hundred eighty five days between the signing of the Declaration of Independence in 1776 and the events of Juneteenth in 1865 when slaves in Texas learned of the Emanicipation Proclamation. So there’s that. Let freedom ring? Puzzling to say the very least.

There’s also the fact that Pittsburgh considers itself quite the center of the fireworks universe so much so that I have vivid memories that center around fireworks from almost every major phase of my life.

As a kid, rolling up the blanket, loading up the fam in our giant very old used hunter green Thunderbird and heading to Lawrenceville’s Arsenal Park to lay on the grass and look up to see the sky explode in brilliant particles of falling sparkles of light accompanied by giant loud booms was my sign that summer had really begun. I was probably wearing one of the three brand-new pairs of sneakers my mom bought each of us each year at the end of the school year at KMart – one of each in red, white and blue. White were for special occasions so I’m guessing I would have been in red or blue and my sister would have been in whichever color wasn’t on my own feet so we’d be festively celebrating America right down to our feet.

I had a boyfriend in high school who wasn’t even close to mother-approved because he went to Peabody, the local public school in Pittsburgh and not Central Catholic like all good boys did. We met on the 94B, a Port Authority public bus that us city kids took to the all-girl Catholich high school I attended. After checking each other out for weeks as one of us sat sideways so as not to be too obvious, he dropped a hand-written note in the lap of my black-watch plaid uniform skirt one day as he got off the bus at the wrong stop that said something cool and mysterious like, “I’d like to see you off of this bus. Let’s do it.” He signed his note “the boy from the back of the bus.” I was obsessed with him and his mop of longish brown hair, the concert t’s he could wear to school with an obvious thrifted herring-bone sport coat and ripped jeans. When we started dating, I had no idea he would eventually be the boy who stood me up for my senior prom because unbeknownst to me he had gotten caught with weed in school and was promptly sent to school-mandated rehab with no time to call me.

That’s another story though.

This story is about the time he took me to see fireworks high on a hill somewhere deep in Pittsburgh’s Spring Hill neighborhood (also not mother-approved), over on the North Side of town that was nothing like the gentrified, bougie destination it is today. The Boy From The Back of the Bus took me to sit atop gravestones at a Spring Hill Cemetery to watch the fireworks that were shooting off all around the city. We probably saw six or seven different displays from that particular cemetery, including the massive fireworks display annually at The Point – the center place where the three Pittsburgh rivers converge at a massive downtown fountain. It was like fireworks heaven including massive making-out with a bad boy in a graveyard in the sketchy part of town.

Going down to The Point for the fireworks took some serious commitment. The crowds! The traffic! It was almost impossible to get anywhere close to the fountain unless you went there in the early afternoon and waited it out (drinking IC Light from a boat, ideally) but my family was never that brave, we didn’t have a boat (though my cousin did) nor were my parents willing to deal with the horrors of downtown traffic when there were many just fine public parks all around our city neighborhood doing their own much less grand version of the festive explosions. My mother was far too practical for that kind of foolishness. Public-park fireworks were exciting enough for us.

Except for that one time that I worked in a building a few feet from The Point on the 19th floor of a skyscraper at One Gateway Center. I had a lease to park right under the building and my company had given all of us employees permission to use the office for fireworks viewing – a very special vantage point indeed. My entire family including my sister’s three kids sneaked into that parking garage completely skirting the heart of the hideous 4th reveler traffic by entering the back way to the lot just as dark fell. We all sat on the giant picture window ledges in my boss’s office and watched the fireworks from The Point at eye level. It was nothing short of magnificent. It felt like we were inside of the actual fireworks themselves exploding all around us but we were perfectly safe and in awe. Even more awe-inspiring was how we scooted out of that parking garage the back way, again, and somehow missed the after-fireworks grid lock. A Fourth of July miracle.

This Fourth of July I didn’t see any fireworks except for the ones I watched on the giant television in my bedroom where my mom is temporarily sleeping while she lives with me for a short while until some work is completed in her house. Those television fireworks capped off a day where I cried at least five different times (trying not to let my mom know, of course, because I’d rather cut off my own right arm than make her worry about me more than she already does, especially now that she’s my house guest and there isn’t any hiding the decline abilities because of my worsening symptoms).

Luckily, the crying wasn’t done all alone in my house while the world was backyard barbecuing because there’s been another major development in my so-called disabled, chronically ill life and that is the fact that I have a roommate now.

No. That wasn’t a typo. Miss “Living Alone is the Only Way I Can Be Happy” had to eat her words with a side of yum-yum sauce when she realized that living with one of her oldest friends (who also is going through her own life transitions right now) might be the best idea she’s ever had. “She’s” me. Of course. And my life with Audrey deserves a post all its own that will happen. I promise.

But for this post the important thing to know is that Audrey and I have a good thing going where we feel completely comfy being two middle-aged women who used to go out and do fun things when we were in our twenties but now we mostly like to sit home, at the Hidden Falls Home for Wayward Women and watch Netflix and often pause shows so one of us can sob.

Me! Sobbing in front of another human! Regularly! That Dr. KB, my new therapist, is some kind of therapy miracle worker but this post isn’t about that magnificent reality either.

This post is about why you should stop calling your chronically ill, disabled friends on festive summer holidays and have the first thing that comes out of your mouth (or fingers, if you’re not a cretin and you text instead of calling) be the words, “What are you doing today?”

I mean. Really?

There are other iterations of this question I get on a regular basis from the able-bodied among us that participate in society where one must always have something to do at every point in nearly every day in order for one to be viewed as an acceptable member of the human race, including:

• What’s on your agenda for the day?
• Got any fun plans?
• Are ya seeing any friends today?

If it’s a festive summer holiday, the ante is upped significantly and the question could be even more specific like, “Got any plans for a cook out and fireworks?”

I mean. I don’t even know where to start but one of my greatest and most suppressed urges is to text back something like:

“Hey! Well I’ll just getting home from a run and I’m kind of tired because Audrey and me went out clubbing last night – super fun btw – and I didn’t get much sleep but we’re gonna hit the pool later and relax with some drinks and maybe walk to the park after dark to see some fireworks later. How about you?”

But I didn’t do that. Not even one time, which makes me feel like I deserve some sort of Crip merit badge for overcoming the urge for extreme sarcasm when asked perfectly good-intentioned and normal questions by the able-bodied folks who she’s lucky enough to be loved by.

Don’t ask a new wheelchair user who is openly struggling trying to master complex things like transferring to the toilet without breaking any bones what she’s doing today unless you really want to hear about it. Some people really do want to hear about it but most people don’t because, well, my answer to that question will typically revolve around things not quite as festive as cooking out and going to see fireworks.

I might answer that I’m going to try to spend some time in my fancy sleeping chair with my legs elevated while I have some time off of work because wearing compression socks every minute of every day because of sitting with my feet down, not moving, in a wheelchair makes them swell and hurt and those socks (while awesome) also kind of blow.

Or I might tell you that I decided to put on clean pajamas on this day because I realized I’d been wearing the not-so-clean ones for four actual days. Some of those were actual work days.

Or I might tell you that I’m going to do some work (because new business and ad agencies kind of always seem to lead to working at least a little bit on excessively long company holidays) but that I’m actually ok with that because hey! I’m American! If we’re not working we’re worthless, right? Or at the very least some of us may try to avoid the more difficult thoughts in their heads by focusing on the latest pitch to the latest potential new client (ok…”some of us” is totally me. You caught me.)

Or I could tell you that I’m going to try to write a little because I’m about to burst from all of the feelings I’m newly learning to actually allow myself to feel and there are so many words trying to jump out of my numb and tingling f fingers, it might be worth donning the socks from hell and sitting at my keyboard for a few hours in my wheelchair so as to prevent myself physical bodily harm from exploding, swollen and numb feet.

Or I might say I’m going to try desperately to finish reading the last 60 or so pages of the novel I’ve been trying to finish reading while also suffering extreme anxiety from a baclofen pump setting that is accidentally excessively high and making it hard for me to stand up so my arms hurt a lot because I’m over-compensating with my arms to make up for my floppy-ass weak lower body (and it’s a holiday so there’s no emergency pump adjustment appointment on the horizon).

You probably don’t want to know any of those things, but even if you do want to know they’re not the answers I want to give you.

I probably won’t say those things because saying them might make me cry. But as it turns out, not saying them has the same effect and whoever said feeling feelings was a smart thing to learn how to do anyway? Yes, I might also be cursing Dr. KB my own personal psychology miracle worker a little too. I’m a bit of a contradiction. I realize that.

Here’s the thing about the questions about what me or someone like me has planned to do.

Chances are that person might be trying to come to grips with so much epically disruptive and unpleasant life and health change in that particular moment when the question is posed that it mainly serves as a reminder of this one very unpleasant fact of living this chronically ill life: I can’t do what you can do.

And even if I could make all the effort and find wheelchair accessibility in abundance and do all of the things you can do on this Fourth of July, chances are I’d feel like such utter shit doing any of those things that I would choose to stay in my mostly-safe, as-comfortable-as-it’s-possible-for-a-chronically-ill-person to be home. A home I am most grateful for. Most of the time when I’m not being a spoiled, self-pitying chronically ill brat.

It’s hard to know what the right questions are to ask your chronically ill friend that won’t make her feel like a human barnacle. I struggle with coming up with even a few that don’t feel just plain awkward. Maybe something like:

• Have you read anything good lately?
• Are you being kind to yourself?
• Do you need to talk about anything just to get it out?
• What’s driving you crazy lately?

Those aren’t even great, really, because sometimes the answer would be I can’t read because I’m way too anxious and I’ve failed to be kind to myself for at least a week. More failure. Ugh. This talking to chronically ill people who are having a particularly hard time thing is fucking impossible!

Audrey was watching me sob while my mom was at my brother’s for a little holiday cookout and she said, “I don’t want to be that person who tries to give you advice when I don’t have a clue what the right thing to say is. I just want to fix everything for you because I see you every day and I know how hard even the littlest things can be for you. I don’t think many people get that because you only allow them to see so much. Which is exactly what I would do.”

And I said to Audrey, my miraculous new roommate, “But here’s what you get because you’re you and you’re here. Being next to me, or even across the room because of the stupid chair, saying nothing is the best thing you can be when I’m having these ugly, scary, impossible to deal with feelings. Dr. KB is teaching me that. Having someone be beside you. Witnessing. That’s what people can do.”

I wish I’d have learned how to let the many people who love me do that for me so much earlier in my life. What can I say? I’m a slow learner. And I’m American. We do. We don’t feel.

I did reflect and learn and study history I was never taught in all of those years of Catholic school on Juneteenth this year. Not to earn white woman brownie points but because it should have been done back then. And I can learn and grow and change my understanding so I will. Nobody called or texted to ask me what I was doing on the first Juneteenth that my company declared an official holiday this year.

I kind of wish they would have.