Struggling to Accept That I Can't Work
What do you do when you become fully disabled and can’t work?
This question has haunted me for years. I’ve found ways to stay active here and there. I’ve found things to occupy my mind and time. The one thing I’ve wanted to do though, I can’t. You see, I had a very strong work ethic. I used to waitress, for example. I would work between eight and 10 hour shifts. I would work during the day, the evening and occasionally overnight. The time didn’t matter to me. The pay didn’t really matter, either. It was the work. I was bringing home a check I earned with my own two hands. It was the satisfaction and the knowledge that this was my money from my work that I did. There was pride in it. My mother always told me, “There’s no work in the grave.” I didn’t fully understand what she meant until the day I couldn’t work.
I remember it so clearly. I had been waitressing at a local Waffle House for about three weeks. I had previously been a waitress there in the past and wasn’t having too much difficulty understanding the ordering system. I wasn’t upset that the servers all washed and bussed their own tables. I wasn’t upset at the extremely low hourly wage. I made amazing tips, smiled and busted my butt every day. Easy? Sure. It wasn’t complicated. Physically, however, it was so draining to me. My back had already been going to pot for years before that. My fibromyalgia pain started when I was a child and continued into my early teens. I was diagnosed at 20. But there I was, scrubbing, prepping, serving and cashing out, all with a smile.
One day when we were hosing down the tiles near the stoves, my shoe lost its grip. I fell backwards, desperately grabbing for anything near me, and hit my head on the cabinet behind me. I tried to stand up and immediately sat back down. My legs weren’t strong anymore. The pain in my lower back was a dull throb, but it was there. I dismissed my assistant manager and didn’t file a work injury report. Why should I? It wasn’t like I hadn’t fallen before. I would later come to regret that decision.
Two weeks later, I was still in bed. I could barely walk. I was living with a group of guys, all with their own trouble and problems. Occasionally, one of the two “nice” ones would come check on me. There wasn’t care, though. It took me sobbing for two days to finally go to a micro-movement specialist (whom I still see to this day). I wasn’t better when I finished seeing him, but the pain was lessened. I remember receiving a call from my boss.
“Why aren’t you here? You’ve been out for two weeks, Mikki.”
“Yes, I know. I can’t walk.”
“Well, are you coming back in? I like you, but I can’t hold your job. We need someone here.”
“I want to, but I can’t walk. Do what you have to do.”
“OK. Your last check will be in on Friday. You can pick it up whenever.”
I never did. Why should I? It wasn’t like it was that much. I was embarrassed. I was angry. I was hard on myself because in my eyes, I’d been careless. How could I have been so completely irresponsible? Nevermind that I didn’t have control over the soapy floor/shoe grip ratio. Nevermind that it hadn’t happened like that before and my grips had been fine prior to that. I was still angry with myself. Unfortunately, my back never recovered fully. That pain is still there. It’s not as severe as the initial fall, but it’s there, reminding me that I injured my back after it had already started getting progressively worse from the stenosis, degeneration of the disc and degeneration of the bone.
I remember trying to work after that. There was a diner in town. It was very well-known. I loved that place. I only worked about three days a week, but even sweeping the floor and mopping were so excruciating. I had been contemplating talking to my boss about trading responsibilities with one of the other servers. One of them offered me the chance one night and I jumped on it. I would do her fills and clean up her machines if she would just sweep and mop for me. I watched her while I worked. God, she was fast! It took me almost an hour to do what she’d done in 20 minutes.
We ended up having to move after my second week there. I was going to keep the job, but I thought about it and after a couple of days, I decided to quit. We were much farther away than we had been and the thought of walking all that way, arriving already in pain and then working for eight hours just… well, it terrified me. I knew I wouldn’t be able to do it. I called my boss and told him I couldn’t get there. I didn’t tell him why, just that I couldn’t. He got mad and hung up. I felt that sting of shame again. My co-workers had become my family, after a fashion. I remember being so sad that I wouldn’t see them regularly. I knew why, though. I couldn’t do it anymore.
These days, I spend some of my time looking for at-home jobs. I can’t work a part-time job or a full-time job that isn’t at home. Why? Well, because I’m considered unreliable. Each day is different. I have to wake up, take a breath and feel. I mean actively feel. I have to gauge how I am and then do so again several times each day. Some days, sitting up is almost impossible when I wake up. Some days, I can sit up, stand up, take a shower, clean and then suddenly, I can’t anymore. I know that makes me unreliable.
Right now, my biggest problem is finding a legitimate at-home position that suits me. I’ve missed so many years of work because of my illness at this point. People don’t want that. They want someone who has continuously worked. I haven’t, and it’s because I can’t.
I’m still working on accepting this about myself. As long as I have to, I’ll look. I know I’m disabled and can’t work reliably. I know I miss it. I know times are tough. I know I have to do whatever I can when I can, and most times, it’s not much. So I’ll keep looking. I’ll keep trying. Even if it’s volunteer work, it’s something. Being chronically ill has, unfortunately, given me a “self-worth” complex. That makes my inability to reliably work so much more difficult. But I keep telling myself this one thing my husband and my therapist have both been trying to drill into my head:
“Your worth is not contingent upon your ability to do stuff.”
Maybe one day I’ll find a job that lets me work when I can and won’t end up putting me in the hospital. Until then, I will keep reminding myself that I’m worth more than I think I am.
Getty image by m-imagephotography.