Why Intermittently Awesome?

I was 35 when I first identified myself as disabled, but that choice came with two realizations: first, that I had been disabled to varying degrees most of my life, and second, that I was now more disabled than before. 

I'll be discussing the details in future posts, but one defining feature of my experience is the unpredictability of my symptoms.

I don't know from one day to the next what work I'll be capable of doing. I don’t know what time I'll begin to function on any given day, how long I'll be able to sustain any activity, and how much time I'll need to recover from it. Tasks that come easily today may prove impossible tomorrow. 

I've accepted that some of the activities I once enjoyed, such as ice skating, martial arts, and horseback riding, now pose too great a risk. However, it’s been more difficult to recognize the things I can still do safely but only occasionally and not necessarily when I'd prefer. 

I earned my PhD in five years and completed my dissertation in less than one, but now I struggle to write this sentence and know I'll need to edit it some other day. 

I taught college English for eight years at multiple universities, but recently, tutoring one eighth grader proved to be all I could handle. 

I put a great deal of effort into trying new things and finding new ways of doing old things, only to leave articles unfinished, goals unreached, and dreams unrealized. 

The intermittent nature of my condition is not unique. Many wheelchair users are intermittently ambulant. Many diseases cause intermittent blindness, deafness, seizures, cognitive impairment, or fatigue. Many chronically ill patients experience cycles of relapse and remission. 

Everyone has good days and bad days. The problem is that those of us with intermittent symptoms are accused of faking a disability if we are seen having a good day or accused of exaggerating our disability for sympathy when we are seen having a bad one. 

Over time, I've realized that my physical and cognitive impairments are not the true source of conflict. Rather, it’s my perception of what I should be able to do, what I need to achieve to feel successful, and what I need to contribute to feel useful. 

It's also others' perceptions of what I must accomplish to be worthy of recognition, what I must produce to be worthy of compensation, and what I must do (or fail to do) to prove I both need and deserve help. 

All of these perceptions are clouded by the ableism we've all internalized, and all are limited by a lack of information and awareness of what disability currently is and what it possibly could be.  

Once, I might have said I'm disabled because the various medical conditions I was born with and later acquired are incompatible with my chosen career and lifestyle. Now, I recognize that the living and working conditions available to me are incompatible with my needs and desires. Again, I am not alone. 

I struggle a lot, but once in a while, I’ll have a good day, a good hour, a good moment when I can say to myself, “I still got it.” 

More importantly, I have moments when I experience something I never have before, something I would never have experienced if my body and mind were not exactly as they are. 

I want to acknowledge the times I am intermittently functional, but I also need to recognize the times I am intermittently awesome. And I want to share both with you.