Do I need help… maybe I do…

I’m terrible at knowing when I need help. Before I had my current wheelchair, The Rocinante, even before my first wheelchair, Firefly, I still regularly refused help I sorely needed. I once took a train journey to London with a friend. On the way back we got separated by crowds on the busy train. I spent the journey mostly sitting on the ground and by the time we arrived at our destination I was barely able to stand. My friend took one look at me knowing the walk I’d need to make home and asked ‘do you want me to get my car for you?’ I looked at him and instantly, instinctively, declined. He looked me in the eye, with limitless understanding and sensitivity nearly perfectly disguising internal incredulity. He hesitated for a moment, finally asking:

‘If I went and got my car, would you get in it?’

My legs couldn’t hold me any more than they could hold a conversation. I silently nodded. 

Our culture is one that judges people for needing or accepting help. In the landscape of productive personal achievement, independence is considered prime real estate. Perhaps as a consequence I’m driven to manage my disease myself. That phrase doesn’t quite cut it. My motivation to do it all myself is incendiary, incandescent, inescapable. 

Yesterday the delivery driver arrived with the shopping from Sainsburys and he, as always, placed the box of groceries on the path a few inches below my doorstep. Caz told me that she could get it if I needed her to. For sure I needed her to. I still refused. My internal drive ignited and I asserted that I could do it myself. 

It was the kiwi fruit that defeated me. 

I had to bend low to get the produce into the bags I was holding, and I dropped the kiwi fruit back into the box, the final item to bag. I crouched to get it, commanded my legs to extend, and they instead began a controlled descent, no power remaining to them. I grabbed the doorframe to steady myself and hauled myself back to a standing position.

The delivery driver bent low, scooped them up, and handed them to me. Like it was nothing. I silently cursed my incapacity. 

Not accepting help causes me some serious problems. When I was out with family at a park there was an opportunity to pee, a toilet in which to sit and squirt right before we left. But people were tired, they wanted to get back, and I didn’t ask for the help I needed, didn’t ask them to wait the few minutes it would take me to empty. My family wouldn’t have protested such a request, but I was trying to be conciliatory, a good friend, needless, able. 

I wet myself on the drive home. 

Today was my first day of jury duty in a courtroom only accessible by stairs. I knew I could not afford to wet myself here. I also would not, under any circumstance, fail to complete this mission. Justice depended upon it. But the people I met today, the woman I was in their eyes, changed radically how I related to them, to myself, and to the idea of help.

In most situations I have the option of choosing whether and how someone helps me. In court, I had no choice. There are more important things to do, more important people to serve, than me at court. So when the Usher intuitively went to get me a seat I couldn't decline in front of the judge, the attorneys, the other jurors. I just needed to remain quiet and sit my ass down in the chair he provided. When I was the last to come in because the Usher wanted me to wait to be last, I couldn’t just hold up a hand remarking ‘I got this’ and blunder my way up the steps under the watchful eyes of lady justice. When the Usher held out an arm to my ailing self, careful to ensure that I got out of the court safely, it wouldn’t have been prudent to refuse him and then faceplant in front of the stenographer. 

I’m pretty sure you can be held in contempt for being a defiant asshat. 

But when I held the arm of this man, accepted his help, I didn’t suddenly lose the ability to walk entirely. The world did not implode. It was actually… kind of… nice. 

Being trans intersects with these experiences unhelpfully. When I’m out in the world I tell most people I’m trans. I’m open in this way because if I own my transness it can’t be used against me. If people know I’m trans already I’m not threatened in every situation by the chance that someone will find out. So when a kind man holds out a strong arm to guide me, I’m acutely aware that he could clock me at an inopportune moment. Honestly they’re all inopportune moments. Turning down offers of help isn’t just about me remaining independent. It’s about me remaining distant enough to remain hidden. 

But more and more I’m realising that no matter how close someone gets, all they see is me. 

Today, I’m almost certain that all anyone saw was me. They didn’t see the hallmarks of my gender history, didn’t hear it in my voice. All they saw was a bold woman in a wheelchair. In this new world I don’t need to tell them my gender history any more than how I wrote off my first car, or how I once danced through the desert in a corset wielding a lightsaber at Burning Man. It’s all just interesting stories about my history. They don’t change who I am. Getting close to people now all they see is someone who has responded to MS with gregariousness, a cherishing of each moment, open to connection and laughter, enthusiastic for every second she’s breathing. And you know what? I think they like her.  

On the way home I had two offers of help. These days I rarely get offers of help but today I was dressed for court. Black trousers, white conservative v-neck top, cat’s eye liner, mascara, blush super high on the cheek. I didn’t look, for once, like I was in the middle of a sweaty workout. The first lady to offer help very nearly took hold of the chair, and the second was with her daughter. I thanked both of these women profusely, declined their offers, and blasted away fast and strong. 

But something was different. I noticed that within these offers of help lay intimacy, kindness, connection. I thanked them a lot and we got into mini conversations about the experience. These women left feeling more confident in my abilities than they had started. I left feeling something, too. With their offers of help and a genuine option to accept them…

I felt truly like myself.

I’m super interested to hear your stories. How do you respond when someone offers you help? Comment below. I reply to them all!