I was sweating and cursing under my breath as I wheeled my suitcase through 30th Street Station in Philadelphia. Maybe it was early in my post-chemo life to be taking a trip to D.C. I might be jumping out of my pants to be my old go-get-‘em self again, but my body is definitely not so sure.
You ain’t ready yet sister, it alternately whispers and shouts to me. Patience, butterfly. Just a month out from the end of cancer treatment, I’m still weathering various side effects — leg clot, infected toe, a fuzzy brain and big-time fatigue.
But when a friend invites you to the first United State of Women Summit, a gathering that is essentially FLOTUS’s power-packed swan song, meant to shine the spotlight on the challenges and opportunities women and girls face around the world — violence, education, healthcare, workforce issues, family care, entrepreneurship — you go.
So I decided to do it. I just needed help getting there and getting around. Help? Help? HALP!
Asking for help is hard. But it’s one of those things that, when going through cancer treatment, you realize you have to get better at doing — a lot better. Help with meals, help getting dressed, help getting to appointments. The list is long.
Good friends are more than willing to chip in. My pal, Stacy, who was attending the event as media, offered to be my shoulder, crutch, anything I needed. Little did she (or I!) know she would also be my constant chauffeur.
Stacy and I had decided to take the train so I could get up and stretch my legs if need be; that damn blood clot makes traveling a bit of a nuisance. Once I got on the train, a nice gentleman offered to move so Stacy and I could sit next to each other. Thoughtful. I’d taken my hat off and gone full naked-cranium. I’ll admit it: Sometimes I do that to let people know I need a little extra kindness. I’m no martyr. Like when an Uber driver would park across the street and I’d be coming from chemo treatment and could barely walk, I’d whip off my hat to say, “Little help here, buddy.”
When we entered the cavernous main hall, I was greeted with smiles and head tilts from strangers. Whether it was an “Aww shoot, Cancer. Hope you feel better” smile or a new “Hi nice lady in the wheelchair” smile — I couldn’t be sure.
Unfortunately, I couldn’t elevate my leg because the train was packed. I watched it start to swell a little at hour two and just prayed it wouldn’t get worse. When Stacy and I made it to D.C., we were both starving so we grabbed Shake Shack burgers at Union Station, hopped an Uber, and brought them back to the hotel room. My feet elevated on the bed, cheeseburger in hand, a friend joining me in the naughty little treat: heaven.
That night, friends had invited me to a cocktail party at a D.C. art gallery. Was I going to be able to stand for a long period of time? Would I drink? And the inevitable worry, would I simply poop out fast? Answers: kinda, one drink, and yes-and-no. I was good for about an hour, and then, rather than collapse, I found a little plastic chair in the corner and sat to nurse a Perrier. After about 20 minutes of that, Stacy whispered, “Let’s get outta here” and we joined a few other friends for a sit-down dinner. Even that proved to be tough after about an hour, but dining al fresco, dusk seeping into the sky, sparkling light across the shiny government buildings, nibbling on Greek appetizers and just being outside — JUST BEING OUTSIDE — was what I needed, and as well as what I’ve been missing.
As I finally laid my head down for a very, very tired sleep with a swollen leg and an inflamed toe, I thought, How will I make it at the convention center tomorrow? I emailed the friend who had invited me for some guidance.
“Have you considered looking into a wheelchair?” she responded. “Convention centers are huge. There’s no reason for you to get winded if you don’t have to.”
“A WHEELCHAIR? I can’t do that… Seriously?”
When I arrived at the Walter E. Washington Convention Center and saw the line circling the entire, enormous block, I instantly knew I would not be physically able to stand in that hour-long line in the sun. I reconsidered the wheelchair.
“Look, Margit,” Stacy said, noting my dread and concern. “You don’t have to be dying before you are allowed to use a wheelchair. I don’t think you can’t do this otherwise. I’ll push you. It’ll be fun.”
With a strange sense of both reluctance and adventure, we approached the front of the line and Stacy did the talking. They were ready for people like me and ushered us right on in. I found myself staying quiet and making sure they knew I actually needed the wheels. Meaning I found myself limping a little harder.
“Okay, okay, you don’t have to overdo it, ” laughed Stacy.
Part of me still felt like I didn’t deserve to ask for help, or that I just wasn’t sick enough.
Once inside, we were met with a chain of well-intentioned-but-scattered guides who tried to help us find a wheelchair. Finally one very harried, sweaty volunteer promised to bring one to us—and so we waited, and waited, and wondered if he was coming back. But he did! Hallelujah! I handed over my driver’s license, and the chair was mine for the next eight hours. First, we had to figure out how to adjust the damn thing, which resulted in Stacy, in shift dress and heels, kneeling on the concrete, moving levers and pedals for a good 15 minutes.
Finally, we were off and rolling in the crowd. And, right off the bat, we clipped a few heels. Oops.
We established a hand signal for “Stacy, you’re getting a bit too close.”
She wheeled me over to a coffee and bagel table swarmed by conference goers. Stacy parked me at the side while she acquired two cups of coffee. My vision was at everyone’s mid-section; at belly height, you miss the context of smiles and pleasantries — instead, you just see only people’s intentions: hands grabbing sugar packets, bodies jostling for position.
As I sat there, I felt all the feelings: embarrassed, out of control, sad, grateful, ecstatic to be there, sad to not feel like myself, a total emotional sprawl. I’d been so anxious and eager to embark on my first real trip, and now I was here—on a set of training wheels.
When we entered the cavernous main hall, I was greeted with smiles and head tilts from strangers. Whether it was an “Aww shoot, Cancer. Hope you feel better” smile or a new “Hi nice lady in the wheelchair” smile — I couldn’t be sure. On wheels, you become an unintentional spectacle. I felt like a one-woman rolling parade float.
As we moved through the hall, a series of volunteers guided us to the ADA section right up front, about 500 feet from the stage.
Hello, there, special section. This could have perks.
I was placed between other women in wheelchairs, those who had brought their own. One woman had various veteran patches on her backpack. Another had an amazing array of pockets and pouches for her water bottles, snacks and other accoutrements. Another had lost both legs. I didn’t belong here; I did belong here.
The place was packed, with 5,000 attendees at least. I looked over at the chatting, buzzing women clinking glasses at the round tables, glowing in the darkened room and back at my crowd sitting in our solo chairs facing forward. I’m not going to try and even suggest I could intuit what someone thinks who is in a wheelchair in a different section all the time, but for me it felt lonely.
The conference kicked off with the “Violence Against Women” pillar, and we watched Vice President Joe Biden roar through one of the most impassioned (albeit long) talks of the day (video here).
“There is never, never, never a cultural justification for dehumanizing another human being,” he said.
Then the conference whizzed through a stellar, diverse line up of back-to-back speakers, (Highlights! Hilarious performance artist Sarah Jones who embodies— not impersonates — various characters and races and somehow gets away with it an emotional Mariska Hargitay and Joanne Smith, the executive director for Girls for Gender Equality, who noted, “Coercing a woman’s reproductive decisions is violence.”) but after about two hours, we were feeling antsy, overwhelmed and frankly, my butt was falling asleep in this metal contraption.
Stacy and I decided to roll on out to find one of the break-out sessions, but it was easier said than done. We had to find the right elevators to access Salon H, and the panel was halfway over by the time we got there. Since the room was already packed, Stacy wheeled me to a corner where my chair could fit, but I could barely hear the panelists. On her own two feet, Stacy was able to get closer and kept texting me things that were being said by the panelists. The carrier pigeon version of modern communication. Not ideal.
Lunch was next, and Obama was slated to speak soon after, so we wanted to “rush back” to the general session room. However…
“Sorry, ma’am, these elevators are shut down because the President is here.”
Apparently, we needed to take a certain set of elevators at the far end of the NFL Stadium-sized conference center. Stacy was getting a workout. We also had to be re-scanned in by a very intimidating security guard who, upon seeing a woman in wheelchair trying to circumvent normal routes of traffic, proceeded to scan and inspect the hell out of us. No body cavity noodling, but he examined every single inch of every 3-year-old lip balm he found in my purse.
Finally, we made it back. But our ADA spot had disappeared, replaced with the white –tablecloth-covered dining tables—which were already full. After some searching, Stacy found an open area to park near the front, which turned out to be where all the congresswomen were sitting. I watched a few other people also squatting in this area get kicked out, but they let me be. A kind volunteer even offered to bring me a bottle of water.
“Maybe you should just keep shaving your head?” laughed Stacy.
“Very funny,” I laughed.
Thankfully, we hadn’t missed Obama. And he was amazing. It made the trek worth it.
“So, I know you’re really here to see Michelle… or Oprah. But I wanted to stop by and make one thing very clear: I may be a little grayer than I was eight years ago, but this is what a feminist looks like.”
After Obama, we stayed put with the congresswomen for the next four hours. I wasn’t moving this time. Stacy regularly brought back bags of SunChips for sustenance.
They announced there would be a “surprise guest ,“ which turned the crowd rabid with whispers of Beyoncé… Nay, Hillary?? It turned out to be Attorney General Loretta Lynch, a seriously fine alternative. She spoke movingly about Orlando, women and LGBTQ rights: “Everyone needs a place of safety. Everyone.”
But then the day’s highlight was, of course, the armchair chat between MICHELLE AND OPRAH. (All hail.) Including the now-famous “Mmm, mmm, mmm” moment between Michelle and Oprah.
The First Lady spoke eloquently about her haters at the beginning of Obama’s presidency: “It’s not what people say about you; it’s what you do. So how will you take action? We can’t afford to be ignorant. We can’t afford to be complacent.”
And: “It’s what I did, not what you called me.”
The whole day was inspirational — an incredible opportunity to be in the same space as POTUS and FLOTUS, important issues discussed and SO MANY WOMEN in one room. That alone was a thing to behold.
On the down side, it was at times a bit too much dog and pony show for each issue and not enough time for interaction, dialogue or networking among the amazing attendees. It would have been powerful to have some truly action-oriented breakout sessions — to reiterate Michelle, it’s not what you say; it’s what you do. And, as someone in a wheelchair, slightly better access to hear the speakers and an easier way to navigate the whole darn thing would have been great. I now have a tiny window into what it’s like to be wheel-bound.
Around 7 p.m., we had to hunt down my driver’s license and return my trusty aluminium steed. It took us three or four volunteers, three or four elevator attempts and finally we found the right information desk. But the guy who’d taken my license had left for the day.
After a few phone calls, another volunteer tracked it down in a locked drawer. I turned in my chair and stepped out of my temporary transportation. And took another step back toward my “real” self, still in progress.
In this odd between-sick-and-well purgatory, I feel a hint of apprehension to let it all go: the attention, the handwritten cards, having someone help with the dishes (“But I’m still not well honey!”). But there is a more overwhelming drive to get back to normal. Even though it’s going to be a new normal, a new Margit.
As I wait to feel like myself again, and try to be a patient patient, it now seems like putting on training wheels was the most obvious, er, step to take.
Read more of Margit’s column, Ovarian Rhapsody:
- Nice to Meet You, I Have Cancer
- The Waiting Room: Details of a Diagnosis
- Choosing Your Cancer Hero
- Hair Today, Gone Tomorrow
- Side Effects Unfiltered
- The Routine of My Dreams
- It’s a Bird. It’s a Plane. It’s… Cancer Lady?