On disability & confidence.

woman on her side in bed

Listen to me read the below here:

 

I began to think about the relationship between disability and confidence while visiting New York last fall for a friend’s wedding. I’d realized on the flight from San Francisco that who I am now bears little resemblance to who I was before I got sick. This is not to say that I was without insecurities, which would be a flat-out falsehood. I mean that I was capable of more extroversion; I exuded a particular confidence that could look like extroversion. I could chat up strangers at a party, laugh, swan around in a giant faux fur coat, walk into a quiet room and ask, “Why isn’t anyone talking?”

What happened is that my body started to fail me. I started to spend more time alone. I stopped being able to go out at night, which limited the capabilities of my social life. Worst of all, becoming disabled stripped me of my confidence. Confidence can be closely tied to capability, and over the last four years, I have lost much of my capability. Days of being unable to sit up without help, of stumbling down the hall to the bathroom on weak legs, are disheartening. Being repeatedly disheartened wears a person down.

books in bed

At times, I see that old self flash through. On a night when I was feeling well enough to go out to dinner, I told the waitress that she was absolutely gorgeous. Because everyone at the wedding I attended only knew me before I fell ill, I tried to recreate that person as best as I could, chatting and low-key flirting and joking until I departed the reception before the meal came, and by the time I got back to my friend’s apartment I was too weak to talk.

The next day, M and I went to see Hamilton on Broadway. We were extremely fortunate to have tickets for the show, which I’d been obsessed with for months, but although we avoided the subway and caught a cab straight to the Rodgers Theater, I was still worn out from the night before. In fact, I was so diminished that I can’t remember the performance. When I saw “Alexander Hamilton” performed at the Grammys, I didn’t recognize any of it. I’m embarrassed to say this even as I know that it’s not my fault.

If disability and illness have weakened my confidence, there surely must be an antidote–so I tell myself. Do I depend on the hope of remission to bring back that old boldness, or do I look to something else? What is that something else?

Esmé

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  • Perhaps it is like this. Your illness has changed you, you’ve become somebody else. Somebody different – somebody who’s not the old you. And I guess in these times, with everything different going on, you can’t help but yearn for the past. Back when things were at least marginally better, in the sense that you could be vivacious, vibrantly confident, forthright.
    Now, as things are changing it’s harder to view these changes as good things. There’s so much happening of which the only thing you can do is react to, that embracing these changes feel like you’re ‘catching up’. And in trying to catch up (and feeling as though you’re too slow to do so, or that things are moving too fast…a special sort of helplessness) you can’t help but look back at your past self. Look at her brilliance, and see the things she had that she doesn’t have now. But I don’t think I can stress just how brilliant you are now, you the person who is ‘catching up’. You are not her, and I don’t think at this moment in time you can be her. The old you does not carry the same challenges you do now. She was a different person, with an entirely different situation. It may feel as though she was blossoming in that situation in retrospect, but you are blossoming just as much, just in different ways.

    I used to look at my past self, admire how confident she was, how she could hold a room. And now I’m a fuller person almost, in that I have many more experiences than the girl of the past, and these experiences reshaped me. Perhaps we don’t resent the person we have become now, but I wish we wouldn’t view who we are now almost as though we are lesser than who we were before. The Girl of the Past was brilliant, because you are here to testify that whatever tribulations she may have had were survivable. In the present though? We have no idea if or how we will survive the challenges we face now. And it is with this fear that we look upon our past self as brilliant and miss the very fact that we are so, so strong right now and not even for a moment do I believe that with everything ‘different’ happening to us that we are ever diminishing.

    • This is such a terribly moving response, and is also most likely true. I must readjust the way I think of my former self, and learn to celebrate the person I am now; this new person has her flaws, but also her magical bits. Really, thank you. x

    • This resonates with me so much today Esme, and Mawa, you write so beautifully and from the heart, you have brought a tear to my eye and lifted me up to embrace who I am today, to let myself be confident with the me now, and to allow myself to grow into this new life. ” … I wish we wouldn’t view who we are now almost as though we are lesser than who we were before. The Girl of the Past was brilliant, because you are here to testify that whatever tribulations she may have had were survivable”. Mawa your quote is going to take pride of place in my space.

  • Esme, I found your site through Susannah’s April Love. It is beautiful; your writing is beautiful; you are beautiful. Thank you for sharing your experience as it helps me and others with chronic conditions that we are not alone. Looking forward to reading more of your work. Much love:)

    • Much love to you, too. Susannah has been a long-time inspiration of mine; I’m so glad you were able to find me through April Love. Stay in touch–and keep going; you’re doing great. xE

  • Grief. Loss. It is such a major part of the disabled experience. I have faced this a few times (it hasn’t stopped coming up) and I find accepting the loss helps to move forward and tried to find an answer for who I am now. My ghost still lingers, and now I am trying to find ways to integrate my past selves, those dreams and goals, and find a space for me now. We share our lives with what feels like different people… it takes time to get to know our new selves, and find our centers inside of them. <3

  • I am also disabled. I have been for my entire life. I’ve come to believe that the unusual stresses and wear and tear of living a disabled life require a higher level of self care. Especially in the area of confidence. I am 38 and realize now(after decades of not coping very well) that I require about 30% more time spent encouraging myself and supporting my personal growth than do my peers. I literally have daily confidence boosting rituals to help with the stress.
    I think that as people with disabilities we are encouraged to take actually less care of yourself then everyone else, to be the flexible part of any mechanism, so that we can simply be included in daily life, but in fact in reality we actually need more care, and more emotional down time..

  • Esme there is much beauty in the person you’ve become. Thoughtfulness, empathy, insight, kindness, love, understanding, gratitude, determination, purpose and strength are all virtues that still flourish in abundance.