I am not your fairy tale miracle cure story.


But more on that in a minute.

In the past couple years, I’ve been quietly preparing to die.  I hadn’t told anyone the full extent of what was going wrong with my body, because it was inexplicable.  Whenever I aspirated and got an infection, I became much weaker than the infection should have made me.  Sometimes I became severely weakened by stress alone.  I knew that there was something going on above and beyond the medical conditions we were aware of.  But I also knew that my symptoms could come from so many different things, it was unlikely we’d ever find it, or that it would be something treatable.

In parts of the chronic illness community, people use a term called ‘spoons’ to describe how much energy you have to do basic things.  I have mixed feelings about the idea, and the Spoon Theory story that originated the practice.  But sometimes it’s a useful thing.  What happened when I got sick was that my spoons would go negative.

When I say negative spoons, I’m not just saying I really didn’t have much energy.  I don’t mean that I felt sick and tired in any way that even the average chronically ill person feels sick and tired.  I mean that I felt like my level of energy was spiraling downwards in a dangerous way.  Where the less energy I had, the less energy I had to replenish it.  At my worst, I would be lying in a hospital bed, going in and out of delirium, and in lucid moments I would notice that it took too much energy just to keep my heart going.  I’d wish that I could stop and rest.  And then I’d realize what that meant.

When I was not acutely ill, I had a constant, subtle sense of fragility.  It felt like one good illness could put me in the hospital or kill me.  And often it did.  I had four hospitalizations between late 2012 and early 2013.  More recently, I was having periods of time when for no reason at all, I’d become unable to move or stay conscious for long.  I knew something was badly wrong.  And apparently so did my doctor, because he started sending me to more specialists and running tests.

This was the result:

Results of cortisol tests, showing cortisol too low to measure, ACTH too low to measure, and cortisol rising up to 8 and 9 when my system was artificially flooded with ACTH.

Results of cortisol tests, showing cortisol too low to measure, ACTH too low to measure, and cortisol rising up to 8 and 9 when my system was artificially flooded with ACTH.

What does this mean?  When they measured the level of cortisol in my blood, it was consistently too low to be measured.   ACTH is a hormone secreted by the pituitary gland that tells the adrenal glands to make cortisol.  My ACTH was too low to be measured as well.  When they flooded my system with ACTH, I made some cortisol, but not as much as they might have expected.

And what does that mean?  It means that my pituitary gland isn’t making enough ACTH, and hasn’t been for a long time.  And that my adrenal glands have therefore not been making enough cortisol.  I have something called severe secondary adrenal insufficiency.  We don’t know the cause yet.  But the upshot is that it’s extremely treatable.  I’m on a steroid called dexamethasone, that replaces the cortisol my body can’t make.

That health crash I had six years ago?  The one I worked hard to conceal until after the worst was over, because I was afraid of being bullied for having too many medical conditions?  Where every single health condition I had took a nosedive, I ended up bedridden, and needing a power chair, and all kinds of changes took place?  We now think that was the time that the adrenal insufficiency became serious.  It may have been around for quite some time after that.  And if we hadn’t treated it, my expectation that I wouldn’t live to see forty, may well have been accurate.

On dexamethasone, I improved rapidly.

Prior to dexamethasone, I could not jump even when holding onto a grab rail.  On dexamethasone, I could do jumping jacks.  First five, then ten, then twenty, then forty.  Before, I couldn’t walk up one flight of stairs.  Now I can walk up and down eleven.  I’m walking everywhere with a cane now, and barely even needing to use the manual wheelchair I bought (thinking that it was more realistic that I’d need a manual wheelchair than that I’d start walking everywhere — I still do need it sometimes, but not that often). I can do 400 meters on a treadmill, I am starting to be able to run (my legs wouldn’t even move that way before) and skip and balance on one foot, and all kinds of other things I thought I’d lost forever.  I’m going on walks in my neighborhood.

Perhaps most amazing is the way I feel after exercising.  In my entire adult life, I have never felt this way:  When I exercise, I feel invigorated afterwards.  I feel more energetic after exercising than before.  This is entirely different than before, when even minor exercise made me throw up, collapse, or both, and could leave me sick and with my body temperature running high and low for weeks.

And this is amazing and magical and wonderful.

But every time I try to talk about this with a nondisabled person, or even with many disabled people, I run into a very ableist way of thinking about this:  The miracle cure story.

It runs sort of like this:  A disabled person has been hanging in the balance between cure and death (because what other possibilities are there for a disabled life?).  Hope means finding a cure, despair means not finding a cure.  They do find a cure and everyone rejoices and everything goes back to how it should’ve been (with them not disabled, of course) and things are great from there on out.

So I run into a lot of people suggesting to me that I’ve “found hope” (I haven’t).  Or that I’m “cured” (I’m not).

Here’s the reality:

I will be on steroids for the rest of my life, according to my doctors.  If I don’t take them, everything goes back to how it was and I would eventually die.

I have to keep injectable steroids around, because it’s that important that I get them every single day, even if I have a stomach bug or a clogged feeding tube.  I don’t have any other meds where it’s so important that the doctor has insisted on injectables.  Even meds that are dangerous to go off quickly.

A bottle of injectable hydrocortisone, Solu-Cortef.

Any time that I become stressed out or sick, my symptoms come back and I have to take more steroids.  This puts me at higher risk when sick, hospitalized, injured, or severely stressed out.  To give an example, when I found out my mom had been in the ICU, I went from feeling great, to too weak to breathe easily, in a matter of seconds.  And when I run down my stress hormones like that, I don’t make new ones, so I have to put them back artificially, it’s called ‘stress dosing’.

I have to be constantly aware of my body and of my stress levels and other factors that affect how much steroids to take.  And I have to largely play it by ear.  There is no blood test to tell you if you’re on enough steroids or not.  You have to learn that yourself.

I’m still autistic.  I still have a variety of other conditions, although some of them are much less severe now that I’m on steroids.  I still need a feeding tube.  I still need to communicate by typing.  I still need a wheelchair sometimes.  I still have stamina problems, just not as severe as before.   I still have severe chronic pain, which is getting worse as I try to train my body to move around instead of lying propped up in bed all the time.  I still have autonomic dysfunction.  I still have hypermobility syndrome.  I still have gastroparesis and bronchiectasis and the hellish interactions between them.

And even though it’s under control, I still have severe adrenal insufficiency.  Having something controlled by medication is great, but it’s not a cure.  A cure would mean I wouldn’t need to take medication, wouldn’t need to watch my stress levels and illnesses very carefully, wouldn’t need to be constantly alert to changes in my body.

This is wonderful, but an inspirational fairytale ending it ain’t.

Blogging Against Disablism Day, May 1st 2014


16 responses »

  1. wow…just wow, i appreciate deeply that you shared this here. It explains so much and leaves me feeling, well, relieved. I know its not a cure but it gives you back to ‘us’…. to me. You see, i’ve followed you on and off for several years. You were the first ‘light at the end of the tunnel’ that i saw when i was reeling from my son’s double diagnosis of diabetes and autism. Your insights on so many topics are so crystal clear for me. Your videos were life changing for me. I don’t always agree, but I am grateful to hear your perspective. When you hadn’t posted for months, i feared i lost you and your perceptions. I actually grieved your absence. And here again, i’ve learned some nuggets of knowledge about hormones, pituitary and exhaustion (you see i have some limits too, and while there is no cure, if i can just get the most out of my life i will be pleased). Carry on, carry on and on…. xo ~ t.

    • Thank you. And never feel obligated to agree with everything I say. I don’t even agree with everything I’ve ever said. All I can claim to be doing is trying to figure out the right thing to do.

  2. i felt afraid you were dying all that time, and am speechless with relief that you aren’t. that’s enough “miracle”, whatever that means anymore.

    also pretty effing relieved that you are still autistic. =^..^=

    • I’m thrilled and relieved by all of it too. I was just getting pressure from some people to turn it into some weird disability-melodrama-blah-blah thing. But seriously, I’m now looking forward to getting grey hairs and wrinkles and stuff like that because it will mean I made it.

  3. I’m glad they figured out what the issue was, and that your treatments are working. The part about this post that spoke the most to me was about the hiding. How you had tried to hide it when things got so bad all those years ago, how you were thinking you might be dying recently, but not really talking about it. That part hits so close to home, it hurts. I feel like I spend so much time covering up how I’m feeling, just to make it through each day, and that the big things, I barely even talk about them with my docs, sometimes. It’s a lonely feeling, and not inconsequential to theme of BADD, I must say, even if it wasn’t the main theme of your excellent post.

  4. My reaction to your story is really hard to explain. I hope I can find the right words. Up to the halfway point, I was identifying with the fear of dying and the test results coming back and WOW there is actually something that can help you manage all that stuff that had no explanation before and now you can do things as long as you have the meds. Which is awesome. And I was happy. I went “wheeee!” :D

    And then you described the reaction of other people and I just stared at the words in disbelief. People actually talk like that? Miracle? Cure? And that makes me sound like I don’t believe you. I do. I don’t believe the other people. I don’t want to believe that anyone can be that insensitive, that determined to impose their own meanings on your experience. Is it really true? I don’t want it to be true. :(

  5. Mel Baggs,

    I used to comment on your blog regularly under another name and I’ve been reading the things you wrote for a few years now. Now that you’ve moved to tumblr I read you there, but since I don’t have a tumblr account I don’t comment.

    I want to say that it makes me so happy that your some of your problems are finally being addressed. Of course I don’t mean that I think they’re being addressed in a miracle cure way, but I did have the sense that you were “quietly preparing to die”. That scared me, but your experiences with the medical system while that was going on scared me too. There’s so much dismissal and harm that takes place there.

    I was talking with someone about about my problems on busses the other day and her response “It sounds like busses suck.” My response was “No, busses are good.” Busses are why I can get almost anywhere, but there’s problems- often unnecessary problems, but sometimes intrinsic problems- that go along with using busses too. I hate that dichotomy: are the resources that disabled people use a kind of prison or are those resources what completes us, what allows us to be a real person? I don’t want to have to choose one, but it seems like that’s all people can see, that if we don’t decide which of the two to choose then other people will decide for us which of the two it is that we’ve chosen.

    I should state that I don’t mean here that I think that the actions of using busses and of treating an adrenal insufficiency are that similar, but it says something that in the context of disabled people the two get responded to as if they are similar and that those responses often take similar forms.

  6. Of course I can’t speak for you, but from what you’ve written here, it sounds like you really have ‘found hope’. Not hope to be cured or non-disabled – I don’t think you even want that – but hope that you won’t be dead soon. And that’s a pretty amazing thing, to think you were going to die and now have hope that you won’t.

    • That’s not what I meant.

      Is there a reason that you need to find a way that the letter of the words applies to me when the spirit so clearly doesn’t?

      • I don’t understand.

        Since when is ‘finding hope’ only allowed to mean what ableists think it means?

        I found hope when I started being homeschooled, and realized it was possible to not be miserable all the time. Before then, I’d resigned myself to suffering at least 6 more years of daily bullying and abuse, if I survived that long.

        Ableists seem to think the only kind of hope that matters is hope for a cure – something many of us don’t even want. But hope to survive and be happy are real kinds of hope, and limiting the idea of ‘hope’ for a disabled person to mean only ‘hope for a cure’ is letting ableists take over our words.

      • It’s like I try to say something, and you try to find a way that the words mean something other than they actually mean. When I say that “I haven’t done this thing that ableists say I’ve done,” I’m not looking for you to find a clever way in which the words the ableists use are actually correct if you just twist them around enough. I’m trying to communicate about a specific, ableist concept. It is not helpful to do this. In fact it drives me completely up the wall when people do this. It’s like I’m trying to communicate an idea, and you’re trying to find a technicality.

        What I’m talking about is an actual meaning behind the words. You’re trying to find a new meaning with the same words. I don’t need you to find a new meaning with the same words. Finding a new meaning with the same words is just like solving a puzzle, it’s not actually helping me in any way. It’s just a clever thing to do with language. And I’m not trying to do clever things with language, I’m trying to communicate about an idea.

        It wouldn’t matter if the idea was called “finding hope” or “finding a monkey up my ass”, the point is there’s an actual idea that the words are pointing to, and I have not done the thing that is in the idea those words point to. The fact that you could use the same words to point to something else that I may or may not have done, is totally irrelevant and kind of annoying. Because it’s kind of like you’re disregarding everything I’m saying in order to prove a rhetorical point or solve word-puzzles.

      • Here’s some further explanation:

        This is not about whether “finding hope” can only mean what ableists think it means.

        This is about understanding and respecting what I’m trying to say about a situation, without trying to find a way to fix it all and wrap it up with a neat tidy little bow and make it wonderful again by changing the meaning of the words.

        So let’s say I was complaining about people telling me that I was inspirational for being disabled and not killing myself.

        And let’s say you came up to me after I said that and said, “But in a way you really are inspirational. You’re a leader in the disability community and you inspire people to do good things for disability rights.”

        How would that help anything at all?

        Obviously the word “inspirational” has many different meanings. The English language is like that. Words can mean many different things, and the same word can have many different connotations in many different contexts.

        In the context I am describing here, ~finding hope~ is something that occurs in the context of disability melodramas. Both real melodramas, like books and movies where a disabled person is hanging in the balance between cure and death (because just being disabled isn’t okay), and finally they are cured and they have ~found hope~. And there’s an implication in all this stuff about ~finding hope~, that there’s something wrong with a disabled person if they are not constantly ~hoping for a cure~ or at least ~hoping for the right doctor to come along who will save them~ or anything along those lines.

        And when a disabled person complains about people trying to shove them into that melodramatic mold, it does not help them one bit at all whatsoever to come up to them and say “But you have found hope, in a way, haven’t you? Because now you hope to live a long time, and you didn’t have that hope before?”

        And it’s annoying. It’s really, really, annoying. It’s like you care more about finding a way for the words to be okay, than you care about listening to what I was saying. And I was saying I didn’t want to be stuck in the middle of someone’s disability melodrama. In which ~finding hope~ has a very, very specific meaning.

        The fact that there are other meanings to “finding hope” are irrelevant.

        Do you think I don’t know that the word “hope” has other meanings?

        Do you think I didn’t notice that I’m happy to be alive?

        Do you think I somehow need to be told what I have and haven’t experienced?

        Because to me, all of that, it’s totally irrelevant. I don’t need to somehow take back the word “hope”. I already know it has other meanings, I use the word hope every day. But when I talk about finding hope in this particular context, I’m talking about being shoved into someone’s melodrama against my will. And when you try to argue with me about whether I’ve actually found hope, you’re basically saying that the words matter more than the meaning. You’re acting like I somehow don’t know that there are other meanings to the word hope and that some of them might apply to my life.

        It’s not that I haven’t found hope in any sense. It’s that in this context, I’m trying to talk about an ableist conception of finding hope. And messing around with words doesn’t help me at all. Telling me that there are other meanings to the word “hope” doesn’t help me at all, because that’s not something I’m unaware of in the slightest. I’m not letting anyone take over my words. But in this context, the only person who seems to be trying to take over my words and how I should use them, is you. I already know hope can mean other things, I don’t need to be taught a lesson about it.

        Unfortunately I don’t have the words to explain why I don’t like this. But I don’t like it. I didn’t like it when you did it, and I like it even less when you imply that by not liking it when you do this, I’m somehow letting ableists control how I view language.

        I mean… would you appreciate it if you were being called an inspiration right and left, in the most condescending of ways. And you tried to complain about it to someone. And the person said “But you are an inspiration, because you inspire people to action within this activist movement!” When the person knows that’s not what people meant by inspiration. And then when you get annoyed about it, the person says “Well don’t let the ableists control the meaning of inspiration!” I mean can you see, at all, how it feels like you’re not even listening to what I have to say, how it feels like you’re maneuvering words around but not listening to what I mean by those words, and then when I say “hey this is really annoying”, you justify it with abstractions about not letting ableists control the words I use?

        Like… I never said I never found hope in any sense. It’s just that “yes you have found hope!” isn’t relevant when you know that’s not how I meant the word hope. And I know you know, because you’re differentiating it between the ableist version and your version.

        It’s also very frustrating from the point of view of someone with my particular language problems. It’s like, the words I’m using matter less than the concept. And to you the concept seems to matter less than the words. What does it matter that there are two concepts that use the same words? Because the meanings of ~finding hope~ in the disability melodrama sense and finding hope in the sense you say it, are as different as apples and bricks. And it’s like… if they didn’t both happen to be meanings shared by the same word, you wouldn’t do this.

        Like if I said “I didn’t eat a brick,” and you said “Yes you did, you ate an apple!”

        That’s how it feels to me when you do this.

        Because I’m going by the meanings, not the words. But I have a feeling that if there were a word that meant both “apple” and “brick”, you would tell me that. Let’s say the word was gnarf. And I said “I didn’t eat a gnarf” (in a context where you knew perfectly well that I meant brick), and you said “Yes you did, you ate a gnarf!” (in a context where you knew perfectly well that you meant apple, and that it was different from a brick). And you’d only do that because the words were the same. If the two meanings of the word ‘hope’ were conveyed in the English language by entirely different words, this conversation would never have happened.

        And that’s part of what annoys me, that this is about words, not about… much else, really. And for me, I’m trying to communicate, I’m not trying to find clever ways to use language. And it’s very hard to communicate when someone else is communicating back in a way where a lot of it really is more about the words than the meanings. It’s just… it’s extremely frustrating for me to have conversations like this one. And for some reason, you and I often get into conversations like this one. I think our communication and cognitive styles might be, if not incompatible, at least highly different to the point that they cause frustration. I know you’re probably as frustrated as I am.

  7. “And for some reason, you and I often get into conversations like this one. I think our communication and cognitive styles might be, if not incompatible, at least highly different to the point that they cause frustration.”

    Really? I can’t think of any other time this has happened. Are you sure you aren’t confusing me with someone else?

    Anyway, I really didn’t mean to offend you. I wasn’t trying to twist words. It just makes no sense to me to use ‘finding hope’ *only* in the ableist sense.

    • I think we used to have a lot of conversations like this. Either that, or I had them in my head after watching you have them with others? But it was a very long time ago. For instance around ideas like low functioning — I don’t think high and low functioning exist, you think the ideas are okay as long as it’s emphasized there’s nothing wrong with being ‘low functioning’. Things like that.

      But anyway, I don’t think you’re twisting words. I do think that you’re doing strange things with words, but not twisting them. More like you’re finding ways that words can mean different things, to make them okay? Or something. I don’t know how to describe it. All I know is that I’m trying to communicate a meaning beyond the words, and you’re finding new meanings for the same old words, and that means we’re having two totally different conversations.

      I have never, ever said, implied, or meant, that ‘finding hope’ can only be meant in an ableist sense.

      What I have said, is that I don’t want to be placed in a disability melodrama in people’s minds. I used the words ‘finding hope’ to refer to a particular, melodramatic way of looking at disability. You then said something like “Well you did find hope.” Which is at best completely irrelevant, because the only thing that your idea of “finding hope” and the disability melodrama sense have in common, are that they use the same words. They have nothing else in common at all. So the only effect that your saying that has, is to make it much harder to have a conversation about the whole matter. It’s even possible that I would use the words ‘finding hope’ in the same way you did, in some other conversation. But that’s not what those words mean in this conversation.

      And by switching the meaning of the words in mid-conversation, the only thing you can possibly do is confuse people.

      It’s sort of like I’ve had conversations with people about the idea of curing autism. In particular there was this one autistic guy I talked to about it. And what he did, was he gradually changed the meaning of ‘cure’ throughout the conversation so that it meant about fifty different things, and tried to persuade me that I actually did support a cure because I supported doing some of the things that he called cure.

      I don’t like conversations where people ignore the meaning in favor of looking at the words, especially when it’s pretty clear what I meant.

  8. Pingback: Almost Alike: A Medical Cautionary Tale | Ballastexistenz

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