Confessions of a grieving disabled workaholic

My trip to San Francisco was supposed to be the greatest trip of my life. In some ways it was and in others it wasn’t.

As I grow older, as my disability progresses and as my grief deepens, it sometimes feels like I’m constantly under attack. Like no place is safe for my body and no hands are safe for my heart. Grief is not something you overcome, it’s a tide you pray won’t crash onto you at the worst possible moment, and when it does, you learn to deal with it. Or at least I suppose, I’m not there yet.

Work has been my life line in all of this, weirdly. It is the only thing that has made me feel valuable in the last 5 years. My ability to set academic and career goals for myself and then achieve them is what I have found to be the most rewarding and the safest. Diplomas can’t hurt you, awards can’t betray you, fellowships can’t lie to you, and esteemed gigs can’t make you feel unworthy. Compliments about my intelligence are the only ones I believe because they don’t feel conditional. They will remain true after the lips that have spoken them are long gone, and now complimenting another. My passage in the Golden State was a confirmation of my importance, a reminder of my intellect, an undeniable proof of my existence as a voice that matters.

But being surrounded by other disabled people is the closest thing to safety I had felt in a long time, where a look or a squeeze was enough to say everything. Space where safety is King and not accompanied by passive aggressive comments that stir up your stomach. A space where safety is Queen and devoid of guilt inducing words towards those in need. A circle where safety is us.

I felt so free in San Francisco. But that very feeling that feels like wings to your spine also can feel like a hand around your throat. Because that freedom too is conditional. San Francisco’s fierce afternoon sun and its unshakable evening wind reminded me of grief. Predictable on paper but nonetheless shocking when face to face with it.

The absence of true peace is never something you get used to though. It becomes like an endless battle against the current, a fight to keep one’s head above water. Then you reach and grab anyone at proximity when your nose has spent too long under the surface. And you let go. Pretend you’re simply floating and don’t need any help because you realize the world despises needy bodies and minds. Who could ever love someone with arms that can only grab but are too weak to hold?

As I am working on my next project, I am driven by the knowledge that I will succeed but also terrified by the reality that the road there is unsafe for my body and thus dangerous for my mind. The voice that reminds me that I am not safe anywhere, not even with myself is one that cannot be silenced. The shadow of grief that is always looming over me to remind me that any glimpse of sunshine is temporary, that the darkness is near, always. And this shadow is incompatible with safety, incompatible with peace.

I hope that one day I too can be fierce like San Francisco’s afternoon sun, and unshakable like its evening wind. Predictable on paper but nonetheless shockingly strong when face to face with me.