Thriving while progressive chronic illness does its thing.


Medicine always claims that experience is the test of its operations. Plato therefore was right in saying that to become a true doctor, a man must have experienced all the illnesses he hopes to cure and all the accidents and circumstances he is to diagnose… Such a man I would trust. For the rest guide us like the person who paints seas, rocks and harbors while sitting at his table and sails his model of a ship in perfect safety. Throw him into the real thing, and he does not know where to begin.

— Quoted in A Leg to Stand On by Oliver Sacks by — Montaigne, Essays 3.13

This quote, in the preface of Sacks’ “neurography,” speaks gorgeously to my gut feelings in medical interactions, my potent belief in peer support systems, and my complex relationship to the “helping” professions – advocates and clinicians alike.

I’m in a transition period in multiple arenas right now. I’m in a transition period in my relationship. My one partnership, my family, is unsteady. We’re taking a “break” for a month. I place quotation marks because I – and I think I can fairly say “we” here – are not sure what that entails, exactly.  I know it entails my moving out and living with an eccentric, friendly, teacher in Bernal Heights in his dusty spare room that I’ve decorated sparsely with my stuffed friends and bright colors.  We’re supposed to only talk about our offspring and logistics, who has Oscar the pooch, Molly the car, when I need to access my belongings at the apartment. It means we don’t “see” other people, but we focus on instead on healing ourselves and thinking about what will be best for our future and how can we make “us” work.  But really, we both want a “guide book”, because, readily admittedly, so much of these parameters are based on sitcom scenes and how they fared.

This week I also transition from patient to provider. I take my ticket – provided to me by Social Security, my friendly government omniscient guide, to have a trial period working, since my “disability” has improved. Yes, my gastric neurostimulator has done wonders for my gastroparesis.  My vomiting has significantly decreased, and while I still experience some symptoms I cautiously feel that I am ready to return to work. Hence, SSDI’s “ticket to work” program, by which I actually find myself surprisingly supported. I can work for nine months while still receiving my cash benefits and if my disability prevents me from being able to do my job, I can go back on SSDI anytime in the next five years.

How are these transitions and the quote all connected?

I’m transitioning from patient to provider. I say that in a way that makes sense to society at large, though really I find that binary unreal – but one that we all work hard to keep up walls to see the distinction. I think we are always somewhere on the spectrum of both patient and provider, in a way such that the mere derivations and connotations of those words refute.

I couldn’t have moved out in the heights of my gastroparesis for all kinds of practical reasons. I’m not sure I would’ve wanted to, but it wouldn’t really have been an option. Had my partner decided to move out, I may have had to enter some type of home with routine care.

I’m going to be working with teenagers with chronic illness – type 1 diabetes, as I have. I’ll be providing them my facilitation skills and techniques in group treatment. I will likely disclose to them that I, too, am a patient of diabetes, when the time is right. So, I imagine they will see me as both patient and provider. In all likelihood, they won’t see themselves that way, in their oppressed states of being young and diabetic.

I’m not sure how I can help my mind transition. My body will go to work, all dressed up in my adult costume complete with collared shirt, trousers, and shoes that aren’t sneakers. I will have props that will help me play the part of provider, an email address, an office with a desk and a computer, a business card.  The photo ID that I can clip to my collared shirt so that I can pass every patient in the halls and wordlessly declare, I am not you, patient, for I am provider. But my mind won’t believe it because it won’t believe the binary and I don’t know how much I even belief in my transitioning along the spectrum of care. Am I healthy enough to work? Did I actually get that degree or was it a five-year dream?

And then, there’s fear. There’s my fear of failure, of disappointing my boss and my clients, of illness flare-ups. How close will my office be to the bathroom? How sound proof are the walls in case I need to vomit in there?

According to Plato, I need to feel all of that to practice. I do agree with him and Montaigne. I agree that SSDI would be a better guide if its executors knew disability from the inside out. I agree my experiences will make me a better guide than the protected painter of life’s dangers. I think when I’m thrown overboard into this world of working, independent adults, I can know that I don’t know how my clients are feeling despite our similar pasts. That I need to know them all as individuals and assume nothing about them. But I can understand that they probably feel fear and they’ve probably been taught that they are not the expert of their own experience. I can also bet that my co-workers probably are wearing their own sets of costumes.

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