Episode 3 – Natasha

a photo of Natasha reclined on the couch, smiling at the camera
original photo by Stephanie Goldfinger of Flauk

In Episode 3, Brianne talks to Natasha Walton from the Tech Disability Project. Natasha shares a story about PTSD, fibromyalgia, and claiming disability as an identity.

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Transcript

Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

Today I’m talking to Natasha Walton, who I met through the Tech Disability Project. I loved talking to Natasha because she shares a story about her PTSD and fibro diagnoses, as well as the routines and habits she’s built up to manage them. She also has a lot to say about disability nomenclature, and what this identity has come to mean in her own life.

I do pipe up occasionally with my own experiences, so if you want more context for that check out Episode One.

We do get a bit of feedback on my mic in the middle of the interview, but I promise it goes away again. Thanks so much for your patience as I get familiar with the production side of podcasting.

And of course I’ve got a quick disclaimer:

This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: Okay, so why don’t you tell me a little bit about – I’m fiddling with my headphones, sorry –  tell me a little bit about how whatever started for you. Were you a healthy kid?

Natasha: I would not say that I was a healthy kid.

Brianne: [laughs] Okay.

Natasha: Growing up, I did have some quote unquote mysterious symptoms, mostly relating to headaches and stomachaches. I had a lot of anxiety and a lot of difficulty managing the stress of school and pressure and family changes. I also had a curved spine, and so I had back pain.

So it was never clear whether any of these things were related or whether they were different, but I had this pattern for most of my life really, until recently, where I would have spikes of enthusiasm or energy to dedicate to my body. And I’d say, “Oh, hey Mom, I think there’s something going on with my spine, can we go to this kind of doctor?” And we’d go, and then the doctor would say something  like, “Oh, well, if you had come 18 months ago, you would have been the right age for a back brace, but because you’re now in eighth grade it’s actually too late. So there’s nothing I can do.” And then I would fall into a deep sense of bitterness and resentment and struggle with the bad news, and then I’d just shut off and be like “Well, then, I guess there’s nothing.” And I’d lose all of that energy and momentum that I’d had previously.

Brianne: Gotcha, I can see how that would happen. So it was all kinds of stuff, but you were still in school and for the most part participating, it sounds. If you were taking initiative or even asking to go to doctors, you recognized that something was going on, but you didn’t really have the full picture, would you say?

Natasha: Yes and didn’t get any diagnoses really, as young person. And I think it must have been really hard as a parent, I don’t think my mom necessarily was equipped to know how to navigate the medical system or advocate on my behalf, and I was too young to know how to do that either, and so we just kind of flailed.

But when I was 17 years old, I had a very acute experience where I had just finished a sports competition, I came home, I had a terrible stomachache. I skipped dinner, which was unheard of for me and just laid down. And as the hours went by, I got worse and we ended up in the emergency room around midnight. And long story short, we were there all night. They said they believed it was a ruptured ovarian cyst and sent me home and said, I’m sorry you’re in pain, but you should feel better soon.

Brianne: Good luck!

Natasha: Check ya later! That was not the case. I didn’t start feeling better. I continued to miss school and when I had a check up maybe three weeks later, my stomach was still distended and I was still having difficulty getting through the school day. And they said “Oh my goodness. We were not expecting this to be the result weeks later.”

So they rushed me in for surgery the next day and anything that could have gone wrong kind of did. And what ended up happening was I had a medical case of PTSD where I woke up too early from the amnesia. It was much more complicated and intense of a procedure than anyone would have anticipated, and I was left again without a diagnosis or any reason of what happened. They said, “We found an infection, it’s probably related to your daughter’s promiscuity.” This is what they told my parents while I was still under.

Brianne: Great!

Natasha: Which couldn’t have been further from the truth and was really one of those things that you hear about doctors. It’s a way to cover their own tracks, they don’t know what’s going on so they blame it on your own behavior. So it was it was very difficult to recover from that, but I was young and I bounced back. But the PTSD was not diagnosed for another 10 years, and so the symptoms around tension, insomnia, and panic for reasons that I couldn’t identify really plagued me year after year and got worse and worse until when I was around 28. That ended up being the next moment for me where I thought “Okay, I think I’m going to have to muster up some energy to figure out what’s going on with my health.”

Brianne: So were things pretty much constant throughout your 20s? Since that’s about a decade, it sounds like that was between 17 and 28. So you were kind of going through life and coping however you were coping, but things were rolling along, basically. Did you look around and go “This isn’t quite the same as everybody else, but I’m doing it,” or how did that feel?

Natasha: Coping is definitely the right word. I went to college, I graduated, I looked for a job. I was trying to just do what everyone else was doing that I did always feel, before and after that surgery, that something was a little bit different with me. But if I had lost faith in doctors before I was 17, after that, other than an annual gynecological check up I didn’t go. Maybe if I had strep throat or something, but I did not have a primary care provider for that decade. I did not seek out any specialists. I didn’t do any investigation. I was in full-on denial.

That was how I coped. I was behaving like everyone else just smoking and drinking and doing the things that make things a little bit easier to cope with, and just really trying to focus on “Be normal, be normal. Come on body, you’ve got to do what I need you to do.” I ultimately felt very dissociated by my body, I felt let down by my body. I hated my body, if all it did was cause me trouble. And I just lived up here in my mind and thought that I was going to be able to have these coping mechanisms last forever. But they didn’t. They expired in a grand way when I was about 28 years old, and I couldn’t cope just by denying anymore.

Brianne: Yeah, just by ignoring it and getting up and telling yourself that this is normal or whatever it is. I’m sure everybody has a different version of self talk, that’s like “No, you’re just being lazy. Everybody else is doing it, it’s fine.” Oh, yeah, I really hear that. It’s hard, especially I think in college and in your 20s when there are so many things that everybody’s doing that are kind of generally unhealthy but also numbing. My experience is that if I drink at all, if I have a cocktail, so many of my body symptoms really mellow out a little bit. But I can’t actually be one cocktail drunk all the time for a variety of reasons. So it’s not solving anything. But you can really cruise for a long time in that coping mechanism plus denial place. So I hear that.

Okay, so that’s how you got to 28? When you are kind of forced to do some research and/or take action, whatever that looks like. So how did that go?

Natasha: Yes. So that was the beginning of a next chapter of recovery really. I had a hypomanic episode related to some difficulty I was having in my career path. And my sense of self, which I’m sure to a certain degree is very common for people in their late 20s, of kind of just self actualizing and growing into their adult self. But for me, I had these compounding health effects and psychological symptoms that made it much more difficult of an experience for me to wrap myself around, to wrap my head around “Who am I? And what am I doing here?”

So I had tried to found a company. I put a tremendous amount of pressure on myself financially to make very quick success. And again, not knowing I had post traumatic stress syndrome, using that lever of stress was the only way I knew how to motivate myself. And without really understanding the terrible effects that it was having on my mind and body. So I ended up having a hypomanic episode. It lasted, I would say there was really a year, a full year, where mentally I struggled every single day to sleep, to wake up, to feel all right in the world. I didn’t know who I was and even though there were positive things going on in my life, that’s around the time that I met my husband, I was struggling on the mental health front.

But I got into therapy and I started putting one foot in front of the other and learning some new ways of managing stress instead of coping through difficulties. And after making a little bit of progress on some stress management practices with my therapist, that’s when I started to really notice the pain. Because I’ve always been in pain every day of my life. And especially as a young person when you don’t know, you have no other baseline, it’s very difficult to ascertain exactly how much pain you’re in, and how much pain is quote unquote normal, and even how much pain is tolerable when there’s so much pressure to fit in and do all the things.

And when I really started slowing down and starting to care for my mind, that’s when I started to not be denying the pain that my body was in as well. So I started meditating. I started with just five minutes and that’s when the pain was just… I was in so much pain. And so I started just five minutes a day, being like, “Okay, I’m going to feel the pain, and then I stop. And then I go about my day.” And so for me, I know there’s a lot of conversation around physical symptoms being mislabeled as psychological symptoms. And so I don’t want to confuse my story with that type of confusion, and I have both physical symptoms and psychological symptoms. And they interplay.

And for me, the way I manage my own health is I treat them the same. I treat them both with the same type of attention now. Oh, something’s hurting, whether it’s physical or in my mind or identity. Okay, now I’m going to take that cue and address it. But when I look back on the story of how it all came about, the two just dance together in a very, very fluid way, was my experience.

And so I went to a psychiatrist. I got an evaluation. That I thought was extremely difficult. I cried every time I went to that office, I didn’t tell many of my friends. I felt tremendous shame, even though I knew that it was nothing to be ashamed of. I still felt a lot of shame. Ultimately, he diagnosed me with something called cyclothymia. It’s not very common. It’s on the bipolar spectrum. Because I had this hypomanic episode, but I’ve never had a depressive episode, a major depressive episode. And so cyclothymia means you just run a little hotter, little higher, little faster.

And so around then I started to say “Maybe PTSD is the right diagnosis.” But he asked if I’d ever had a flashback, and one, I didn’t really know what the trauma was or could’ve been. And in my mind it maybe could have been something different. We’ve all been through, especially women, some tough experiences. So I wasn’t sure even what I would be looking for in a flashback. And two I didn’t know what a flashback was. He said it was like a movie playing, and that registered a certain way to me. But when I was in his office, I didn’t have the information to be able to say “Yes, I have had a flashback.” And that’s why I didn’t meet his criteria and that’s why I didn’t get that diagnosis from him.

Brianne: Okay. And it’s so subjective it sounds like.

Natasha: Yeah, it’s all dependent, well not all dependent… But in my experience it was mostly dependent on what I could self report.

Brianne: And your interpretation of the question.

Natasha: Yeah, without having and knowing what all of these questions actually meant, and that makes self reporting pretty difficult. And that’s why I always include that detail in my story. Because I think there are a lot of people who may be experiencing PTSD symptoms who don’t know how to identify them, or articulate their experience, and are getting the wrong diagnosis.

Brianne: And who are maybe using the wrong language for the medical community it sounds like. That makes sense, and then of course makes no sense because nothing does.

Natasha: Yeah. We interface with the system and our understanding of it has so much to do with our success in it.

Brianne: Yeah, okay. So at this point, you are now seeing somebody and I guess if it’s a psychiatrist they do have a medical background, but they also are in mental health. So it’s a person who, whether or not it’s a good experience with that person, they are theoretically equipped to help on both sides. And then if you were starting especially looking at mental health stuff and that shone some light on your physical symptoms, did that change your course of action? Or how you started to think about your own experience of your body?

Natasha: That’s a good question. I think at this stage, I felt like even though I was starting to get in touch with some of my physical symptoms, that unless I could get mentally in a place where I was more stable, I wasn’t going to be able to treat those physical symptoms or maybe even feel them. So that’s kind of why I prioritized it. And then the second piece is basically after seeing that psychiatrist, he prescribed lithium for me. I had some nervousness around it, and I said, “Okay, I hear you. I don’t know if I want to get blood tests every month. I feel like I might have PTSD, and so I’m going to research some other treatments. And if those don’t do the trick, I’m going to come back and take you up on that course of action.”

So I did my internet research, and I actually heard a podcast. It was a Tim Ferriss episode interviewing a comedian of all people named Whitney Cummings. She’s very open about her mental health journey and chronic illness symptoms. And she was the first person I heard talking about PTSD in a way that I was like, “Oh, that’s a diagnosis that I could potentially have.” And she started talking about PTSD treatment, which I had certainly never had any exposure to. And that’s when I started to research again. And so she talked about a treatment called EMDR.

I ended up finding online a treatment called somatic experiencing. And just right after that, I felt like my trauma symptoms were manifesting themselves not only in my mind, but also my body. And somatic experiencing is a type of treatment that addresses the nervous system specifically, which connects the mind and the muscles essentially. So chronic PTSD is when the nervous system is in a near constant state of fight, flight or freeze. Verses for a nervous system that has an experience, it will go into one of those gut responses only when there’s a threat. And then when the threat’s over it will come back down and leave that threat response.

What I was learning as I was researching somatic experiencing and Dr. Peter Levine who created it, was that my system was getting stuck. It was basically always in a thread response. And that was really putting a lot of strain on my adrenal glands and just all of the systems that respond, for me to be basically constantly in a state of panic. And that’s why I was having so much trouble sleeping and that’s why my body was holding so much tension. Which I came to realize, as I started this kind of baby meditation practice that when I really tuned in and could tolerate the pain enough to feel it, that my muscles were clenched.

And so I started this therapy, and for me it worked wonders. I took it very seriously. I went twice a week for about a year. And then once a week for about another year. And it’s a body-based therapy where basically each session is different. And for each client it’s going to look different. But in my experience, she was holding space for me to connect my mind and body, kind of for the first time in a really long time. And it’s all about titrating, going very, very, very slowly and saying, “Okay, let’s just feel that a little bit. Okay, now let’s feel something that feels good.” And then keeping it in that window of tolerance and slowly training the nervous system to understand that whatever happened that was so terrible, that was then and this is now, and you’re allowed to be off the hook.

Brianne: And learn to close that loop in terms of, I also mean the fight or flight response. The nervous system response. So it was a place that you go to, which makes sense. What kind of a practitioner do you find? Are there many practitioners of this? Is it specialized, so if you’re in a city it’s easier to find? What kind of person is it?

Natasha: It’s growing. I’m sure that there are places in the country and world where it’s going to be harder to find a practitioner. I was in the Bay Area at the time, which was a great place to be looking for a practitioner. But it’s basically a follow-on training and a lot of the folks who are trained in it are first trained as therapists, but there are also body workers, massage folks who can do a version as well. So depending on what type of therapy you’re looking for, mine was an MFT but we did not do talk therapy. We also didn’t talk about the trauma, which I think is really important to note, that this therapy is not about revisiting or reliving or reprogramming your mind around the trauma. It’s about actually saying let’s actually stay really far away from that and move forward one inch at a time, not overwhelm your system.

Brianne: Yeah, and I know that some people talk about how for some people talking through trauma, your body can’t tell the difference between thinking about it. So talking through something that happened and actually living it. And of course, that also depends on who you are, and what your experience was, and how your system is processing something. But for a lot of people, you’re just tearing the wound open over and over again if you’ve identified the source and you’re trying to talk through it with a practitioner. You’re just hurting it’s not helping, but it depends.

Okay, so you were doing that for two years, which I’m sure would be a very intensive getting into your body experience. Especially if you’ve been running away from your body for a really long time. And then what? Where has that gone, I guess from then to now? Or have there been different physical things that happened or did that clear a lot up? I like to ask compound questions so that you can answer whichever one resonates.

Natasha: Certainly. Yeah. So again my philosophy that I was taking up was “Okay, I want to address my mental health symptoms first and then I want to address my physical symptoms.” Somatic experiencing helped enable me to continue the search for some additional diagnoses. So my talk therapist, actually, she really helped me work through some of my issues around doctors and just trust with the medical system. She was raised by physician. So that was just kind of an interesting quality that she had, and one of her parents was a rheumatologist, which I’d never heard of. But because she of this family connection she asked “Why don’t you just do a search? Why don’t you consider looking into rheumatology? A lot of the symptoms you’re describing could potentially be in that field.”

And so I went, and that was the first time I heard about fibromyalgia. And because of the chronic widespread pain that I feel around my body, we thought that that could be a diagnosis. And so I do think that I have fibro as well. I take a pill called lyrica, a small one in the morning, a small one at night. It’s been really helpful for me, just immediately. I didn’t have any negative symptoms, or side effects rather, and it immediately just helped me with brain fog, feeling a little bit clearer and a little less achy. So that helped.

And then there was also a physician, I believe his name is Dr. Teitelbaum, who is one of the experts who’s in the media around fibromyalgia. And he wrote a book and I read the book and I was like, “Okay, I can make these changes.” And they were lifestyle changes. And I think that’s one of the hard things about fibro is, even though there is a medication like lyrica, for me and the symptoms that I associate with fibro, just the way that I live my life and the lifestyle that I keep has a big impact on whether those symptoms are flared or not.

So I had to start going to bed earlier, I had to start winding down before bed earlier, and be really careful about screen time. I went gluten free. During this whole time, I really mostly stopped drinking, and I think that was mostly just in the spirit of recovery and to really understand what was going on with my body, I didn’t want to be covering any of that up, so that works for me.

I started taking some supplements for instance and more hot baths with epsom salt. That book and kind of coupling these diagnoses that I’d collected at that point, I really just amped my self care up. It started being a daily thing instead of a weekly or monthly thing.

Brianne: Yeah. Are there things that you’ve tried that you’ve let go of, and are there things that you’ve tried that you didn’t really think it would work, but it has made the biggest difference? Kind of both ends of the spectrum,   what has it been like to tinker with lifestyle? Because I think that stuff is hard because there are so many skeptics. Obviously it’s so hard to sell lifestyle changes, sell might be the wrong word, but many people look for medication because they only want medication, and they want to believe that nothing else will make a difference. So how has that worked for you?

Natasha: I think the most difficult thing for me to accept related to the question is that I was only going to realize some relief when I did a combination of things. And the kind of analytical thinker in me wanted to instead isolate things and do one thing at a time and see how much it changed versus embracing the more holistic approach. There’s something that made me uncomfortable about making a change and not being able to know exactly how much that one intervention was impacting things. But I’ve realized for myself that I can’t know with that level of precision. But in general, when I’m living a certain way, I feel much better. And as soon as I start to let my routines generally go, I get into trouble extremely quickly.

Brianne: Yeah, yeah. I have tried to do symptom tracking or even just food journaling, but food journaling plus symptom tracking plus whatever kind of other information you’d put in there, and every time I start to do it, it’s just too much information, there’s no obvious connection between anything. It’s such an intensive process that never really yields fruit, so that’s hard, I think. I agree with you, it’s hard if your brain wants to find connections and I think that’s one of the reasons that there aren’t good studies about some of this stuff is because you can’t isolate the variables.

Natasha: In terms of what has made the number one thing for me, the thing I prioritize top in my life is sleep. I’d say sleep is first, just that category. Then my health, including my mental health and then my marriage. And because when I don’t sleep and I don’t take care of my physical and mental health, I can’t show up for my marriage, much less any other relationship or aspect. But sleep is the thing. And so in pursuing sound sleep, that’s when I started being able to isolate variables. Oh, what happens when I watch tv right until the moment before I fall asleep? Oh, I can’t fall asleep. And so I think that by having sweet be my flag post, that helps me notice how other things might be affecting my sleep, rather than trying to decipher how these things are affecting every other symptom, that’s harder to track.

Brianne: Yeah, I’m definitely at that point right now where sleep is the thing. It is the one lever that I can immediately see if it’s impacted. Like, “Ah, this is hurting, it’s because I didn’t sleep well.” And you can tell, if you can’t fall asleep, there’s something wrong. Or if you wake up too early, because I run into that too. Monday morning I woke up at 2:30 in the morning and I didn’t go back to sleep, and this is a bad day, this day is over now. Yeah, it’s incredible how that kind of shakes everything. But I guess it’s when your immune system is operating and that’s what I’ve been told most recently is a big part of it. So yeah.

Natasha: And recovery for your muscles as well. So for chronic pain,   when we sleep that’s when our muscles repair. And for all those years in my 20s that I had insomnia and was only getting light sleep for a couple hours a night, my muscles were just building up this… residue, in a conceptual way not a physical way, they were just becoming more and more sore because they were never getting that chance to really recover.

Brianne: That makes sense. And so now where are you? So that’s a great priorities chart. I think it really resonates with me. How much of your energy – it sounds like at this point it’s probably still taking up a lot. This is something that I find for sure, is it’s a full-time job doing all of the things that I need to do. So how do you want your life to be shaped around that? I’ll work on phrasing that question better as I do more of these, but I think it’s important. Also, your project, the Tech Disability Project, is kind of about this too, about how work and health kind of overlap. And how do we build a space for that? So how is that working for you right now? Or how are you approaching it?

Natasha: So before I answer that question there’s kind of one more important chapter to mention. So after fibromyalgia and a lot of those interventions, I really was feeling better on a lot of fronts after taking PTSD treatment and fibromyalgia treatment. But something that was interesting that they said around fibro was acknowledging I’d had some injuries in the past. Which I have, I got injured a lot, as I was an athlete in high school. I had to stop running when I was around 20 years old and I had to stop skiing then, and I was kind of slowly losing activity. And I was realizing, like I tried yoga therapy, and then I got an injury. And as I was trying things I kept getting injured. But the fibro doctor said “Oh, no, fibromyalgia doesn’t actually tear, you’re not actually more likely to tear your muscles or straining your muscles with fibro, it just feels like they hurt.” But as soon as I thought that might be the case I started living as though that were the case, and I started getting even more injured.

So there ended up being this kind of extraneous symptom that for all the things that were covered by my other diagnoses and treatments, I was getting frequent muscle injuries that we still don’t yet have a proper diagnosis. We’ve explored Ehlers-Danlos Syndrome, maybe I have hypermobile joints, but there are lots of criteria that I don’t meet for EDS.

Brianne: And EDS is incredibly complicated because there’s so many different types and some of them have tests and some of them don’t.

Natasha: Incredibly complicated. And I am part of EDS support groups, and I found that the tips and tricks that folks share to EDS, many of them help me and it’s probably not actually the right diagnosis. It’s possible that maybe my chronic PTSD and muscle tension just for so many years has made my muscles more brittle. I don’t know. And I chased the diagnosis for a while. But one year ago, and this will relate to the question that you actually asked, I decided that I can’t continue my pace of work because I just keep getting injured, and I know that when I’m a little bit stressed, because stress blows me out more, then I feel my body less and I’m listening to cues less, and then I do something that hurts my muscles. So I had 10 muscle injuries. I strained my left pec. I sprained my spine on the chiropractor’s table.

Brianne: Just like, doing things that should be benign it sounds like.

Natasha: Yeah, I got chronic hip injury doing a stretch. I tore my calf on a walk. There’s no region of my body that hasn’t had an injury. So a year ago, we made some drastic changes. My husband and I quit our jobs, we sold our stuff in San Francisco and we moved to Bali, one way ticket. And I said, “I am going to take a break from the types of medical interventions that I’ve been seeking.” Not that I’m throwing any of that away or wouldn’t seek them again. I’m going to take a break for now, and instead I’m just going to tune in and I’m going to go far away and have zero responsibilities outside of taking care of myself. And I’m going to meditate for an hour or two a day, and I’m just going to try some things on my own.

And so the first part of the trip, I started really trying to work on my posture and some of my core muscles, and some of these things that are so commonly cited as having a big impact on your musculature functioning. But even just trying to sit up straight hurt. And I had to be honest that I was getting a little achievement oriented with it, like I went to Bali and I need this story and I need these photos. I need this certain success to look a certain way. And I had to back off and say I don’t think it’s going to look this way. So then I stopped and all I did was restrict my mobility, which no doctor has ever recommended, and maybe no doctor or PT ever would recommend. They’re always saying we want you to have more mobility, more mobility. But I said I’m going to make sure it doesn’t hurt, and soon as it starts hurting, I’m going to stop doing that movement.

So for instance, I stopped getting up and down off the ground. I don’t bend a lot because of my hip, and I started really honoring that and just deciding that if something’s on the ground I’m not going to pick it up. I stopped climbing stairs, because that really flares up one of the injuries I’ve had. And so I made these changes to the motions I was willing to make because I had so much time and space, which it’s worth noting is a huge blessing and huge privilege to be able to focus completely for this for four months.

I was able to prioritize the mental overhead of essentially memorizing the things that I can do because the feedback of my body isn’t quick enough in the moment always. I would have to commit these things to memory and kind of redesign how I move basically. And since I did that, I’ve been major injury free for the last year.

Brianne: Wow. And so that’s a huge change. I could work myself up into being frustrated just imagining the conversations that you would have with people about that. Who are like “What do you mean, just do it, just work around it.” And you’re like, “No, no, but it’s working, who cares?”

Natasha: Yeah, and to be honest, I don’t try to explain this part of my health very often. It feels great to do it in the context of promoting information about chronic illness. But this paradigm, you hit the nail on the head, this paradigm is not common sense to most people. And there’s such a tendency for people to ask prying questions or try to solve your problem that I’m not open to just talking about this with whoever really at all. I don’t climb stairs. I’m disabled, I don’t climb stairs.

Brianne: Yeah, it’s not working. And so that was a year ago that you quit and that you started doing it. And that is a huge change, to go, “I haven’t hurt myself basically in so long from paying attention.” And have you noticed other changes or what else has kind of evolved as you’ve been focusing like this?

Natasha: So in Bali, alongside figuring out the specific mobility and injury side of things, I really got to focus on self care, even more so without the constraints of a nine-to-five job. And so one thing I learned is that I need, maybe eight hours is the recommended sleep for most folks, I need between nine and ten for me to feel how perhaps someone else feels with eight hours, I need closer to ten. And when I get eight hours, I’m really sleepy, and lord help me if I get less than that. And I also found that setting an alarm doesn’t really work for me, I need to just sleep for as long as my body can sleep and that’s pretty counterculture. Even that isn’t something I talk about very often. But I don’t make morning commitments. Eleven a.m. is the earliest I’ll accept it and that’s very rare, occasional, once a month max.

And then when I wake up in the morning, I eat breakfast, I make some tea, I do some coloring and do some journaling, sometimes I do some reading of certain types of books. And then basically when I feel ready, I will meditate and shower. And not until after I meditated do I take my phone off of airplane mode and even consider interfacing with the rest of the world. And that is really important for my mood and for my stress levels, it’s a baseline for myself. Where no one else’s agenda or emotions or anything else is involved, because if I get involved in anything that will stir me up emotionally first thing in the morning, that can set off the entire course of my day and then I’m not able to take care of my body and I could get injured. 

Brianne: Yeah, and that’s your priorities priorities flow chart. Yeah, the appointment thing and what you were just saying about mornings, that super resonates with me right now. It’s something that I’m trying to navigate, and I’m asking okay, well, what kinds of things do I want to do? And I used to work as an editor, and as an editor I had daily deadlines. I was publishing every day. And now, usually, it’s almost certain that I’ll have definitely one good day a week, and lately more. But I don’t know which days won’t work, so I can’t. It is no longer a good idea for me to take on anything where someone is going to expect something on a specific day.

And the way that this goes with the rest of the world and with work is alright, well, what does it look to say, “I am smart, I am a good worker.” And there’s lots to unpack about not valuing yourself based on your output, but if you want to, if you want to be doing something and participating and you’re like, “Okay, but I need to find a way to participate that people aren’t expecting things at specific times.” And everything is built around that right now. And it’s bonkers, because it doesn’t work for a lot of people and more and more people. Or I guess I’m meeting more and more people as I’m seeking them out, and I’m sure you are too. Yeah, routines.

So then do you have an inkling, or have you started to think about where you are going or what your next looks? It might look basically like this, but are there things that you want to incorporate that you haven’t, that are in process?

Natasha: The way I think about it is that when I was in Bali, I relearned how to live. So these very basic components of sleeping and eating and waking up and moving my body. I had to go back to the drawing board in my 30s and relearn how to do all those things in a way that honors my mind body. And to build on what you were just saying, I feel like now I’m trying to figure out what that looks like from a professional perspective and it’s very much in process. Even at this moment I’m volunteering, I’m working on Tech Disability Project, there’s another community.

At this moment in time I’ve taken on more than I can. And none of it’s super longterm, and I’m going to be able to get that worked out in a couple of weeks. But it’s a struggle. I keep wanting to fall back on what I think of as my main skill set that I’ve been building the last 10 years, which involves people management and basically mobilizing people around projects. I know how to do that, and when I see an opportunity to do that that’s aligned with my personal mission I feel like I should just pitch in and do that. And then as soon as I get halfway in I remember that this type of work drains me and it’s rewarded by the world, and sometimes I don’t know if I could ever make money without using that.

But I have to get rid of that thinking because it doesn’t work for my mind, it doesn’t work for my body, and it stresses me out. And when I’m stressed, I can’t do anything, really. So I’m experimenting. And I wouldn’t be surprised if more of a quote unquote maker’s schedule is what ends up being better aligned. And trying to focus on writing and reading in this deep work that is so fulfilling. But also something in me when I get on it is like, “No, you should be doing something, you should call someone, you should sign up for something.” I haven’t really gotten to a point where I’m making a lot of traction in that new type of direction.

Brianne: Yeah, and I don’t know either, which is why I like to ask people. Because I think this is one of the biggest things. There’s so many people, so many people who are in this kind of in between where I have skills that I want to contribute, and I want to have community, and I want to do it in a way that isn’t counter to my well being. And I don’t know who knows what that looks like yet, but I’m sure we’re all kind of finding pieces as we go.

So you’re back in the States. Have you been back for very long ?

Natasha: We got back in late January and decided to move to Denver. So we’ve been in Colorado, it’s a different pace, the professional pressures are different. I’m getting to know people in all sorts of different industries versus I was really kind of in a monoindustry in San Francisco with tech where everyone I interfaced with did the same type of work.

And so it’s been pretty refreshing for me to pull myself out of that hypercompetitive environment and be in a place a little more focused on   wellbeing and family and turning work off after work.

Brianne: Yeah, and getting outdoors when that’s good. I just moved to   rural Massachusetts in the spring, and the pace is so nice compared to… I was in San Francisco for a bit and I lived in Toronto before that, which I loved. I loved Toronto, but it doesn’t work anymore. I can’t. Cities.

Is there anything else about your health or your story or reflections or stuff that’s come up that that you want to talk about or share from kind of thinking through it?

Natasha: I think at this point, I put a lot of pressure on myself as I was in deep recovery to simultaneously be sharing my story and giving back in fighting the stigma. And I ended up realizing that as difficult as it was to ever get that out of my head, just that trying to do those two things simultaneously maybe isn’t the best idea for myself. But now that I’m in a more stable place, and and of course recovery is ongoing and I still live my lifestyle but it’s not consuming as much of me as it used to, I’m focused on disability advocacy.

And so what that’s looking like, the main concepts that I feel are not yet shared are one around the nomenclature of disability, even using the word disabled or person with disabilities, personally overcoming the stigma around that and understanding how much that special magic word as I call it unlocks in the world. When I go to the airport and say, “Hey, I’m disabled. Hey, here’s what I need.” And I can get it. I can go to my employer and say, “Hey, I’m disabled, I need this accommodation.” And I can get it.

And for all of the unfortunate stigma that surrounds the nomenclature, for those of us that need it, everyone gets to choose how they identify personally, but for those of us that need accommodations, if we can use that magic word and get comfortable with that, so much can become easier and make certain activities possible.

Brianne: So, do you want to talk a bit about the Tech Disability Project? Because I will put this up in early October so that it also overlaps with October.

Natasha: Fantastic, thanks, yes. So since returning from Bali and starting to think about this next chapter of my professional life, I’ve been focused on diversity and inclusion in tech, for better or for worse, maybe. Maybe at some point I’ll fully escape the grasp of tech. But for now, I have this relevant experience, it’s an exciting growing industry, and it needs diversity and inclusion within every industry, but tech in particular is really important to me. So as I’ve been learning about all of the fantastic work that so many people are doing in the D&I space, communities, funds, initiatives, nonprofits, for-profits, there’s so much activity around so many different types of identity groups except disability.

And I couldn’t help but notice that every now and then disability is named, but there’s no meetup group, there’s no fund making sure that we have disabled founders that are succeeding, there’s no initiative to make sure that tech workplaces understand that folks with disabilities need accommodations. There are consultants and the ADA exists, which are fantastic, again, not to discount any of that work. But compared to so many other identity groups in tech specifically that have so much more activity and momentum around them, the disability community isn’t one of them. And so it seems like an opportunity to me.

At Adobe, where I last was, my last company was acquired by Adobe, and there was an employee resource group in name only at the time when I joined in 2016. It was called Access Adobe, which I thought was great. Even in name only actually helps because I landed at this new company and I saw this on the website and I thought “Okay, phew. I’m okay, they want me,  everything’s going to be okay.” But as soon as I started digging into is there a meeting or an email list? There wasn’t yet, and there was an opportunity to stand up and raise my hand in my workplace and say, “Hey, I’m going to help lead this.” Which was scary to disclose publicly inside of that community fair in front of all my coworkers. But I did it, and there were no negative repercussions, only positive impacts. And so that was kind of my first foray into the disability community in tech.

And so this year I realized that there was nothing above that. There’s, nothing necessarily beyond these employee resource groups at a couple of large companies. I started thinking about, okay maybe we could form a group, maybe it’s called Disabled In Tech, kind of like how there’s Lesbians In Tech, maybe there’s a group for us. But I started bumping up against this nomenclature problem of actually if we use the word disability, I don’t know how many people are going to opt in. And I don’t know if people are going to feel comfortable opting in. So that’s when the idea came to start with more of a content-first campaign rather than a community for a strategy.

Okay, let’s just create a space for folks to come forward anonymously or not, and completely with only who’s interested to come forward and share their story of injury, illness or disability related to their career path or their workplace. And I was not sure what would happen, but kind of put some feelers out there among some disability advocates I knew in the space and people started signing up and sharing and saying they wanted to participate. And now we have over 30 participants. Every day in the month of October, we’re going to be releasing at least one piece of content where someone is sharing their personal experience. And that’s it, there’s no other agenda beyond this. We aren’t at the point yet where folks have come together with a particular platform, maybe that will happen, that would be cool. But for now, we’re just trying to open up the conversation and increase people’s comfort levels discussing and disclosing disability in the workplace.

Brianne: Yeah, that’s great. I’m really looking forward to seeing everything that people write. Because I also think a nomenclature thing relating to what you’ve been saying, but to talk about it differently, is also that there’s what we learned that disability is maybe when we were little. And this is a representation problem and and it’s a signage problem, frankly, so we think that disability means mobility. So a lot of the time if we think about it, we’ll think about physical disabilities and specifically people who use wheelchairs. And then there’s a whole thing of a general population problem where we don’t recognize that many people who use mobility devices are actually able to walk and that it’s a tool, but that’s a whole platform in itself.

But then there’s this much larger thing about how everything else that you describe, so injury and chronic illness and chronic pain, they are disability, but calling them that feels like you’re encroaching. And not for any reason. I don’t think this is just me, because I feel like I’ve talked about it in different things, but because we learn this one definition, we have a lot of trouble expanding it to include all of the different people who need accommodations. And not for lack of trying on the part of the disability community. Because I agree with you, there’s a ton of really awesome advocacy going on and it’s still a really uphill battle for making sure that that language is understood by people.

Natasha: I think the most common misconception is that disabled means not able or less able, and even how folks say stuff like “people of all abilities.” That kind of makes it sound like there’s a spectrum there, the people that are able, and people that are medium able, and people that are less able. And actually the word disabled is kind of a medical interpretion. It’s a medical model and it’s related to ableism. Whether it’s malicious or not, but defining ableism is just believing that an able-bodied person is better than someone who is disabled.

And moving away from that, another model of understanding disability is that folks with disabilities simply require particular accommodations in order to interface with the constructed environments and the constructed society. And that we made these things up with certain folks in mind, and with other folks, we said, “We’re not going to make sure that you also have access to these buildings and these programs and these lifestyles.” And to have a disability simply means that we have this extra hurdle to jump through of figuring out, okay, what is that accommodation and then asking for it and making sure that we get it.

And I fall into this in my own life, there are certain things I don’t do. I recently got a house and I have this yard and there are these weeds. And I’m like, “Well, I can’t pull the weeds because I can’t get on the ground and I can’t bend.” And so I was stuck in that model of I can’t. And I was watching a video the other day of a person in a wheelchair using this tool to garden. And it’s not that I can’t take care of my garden, it just means that I have to go through these extra steps of figuring out what it would take for me to be able to do that. And of course, not everyone wants to do every single thing in the world. So we choose where we put our energy and effort certainly. Like skiing is not something at the top of my list that I’m going to figure out how to do. But I bet if I was hellbent on that, I could.

So that’s just another way of understanding the word disability. And until I understood that, I actually was really much more comfortable identifying as a person with disabilities, that identity-first language. And as soon as I understood that to identify as disabled, which frankly is just easier to say and is not an insult at all, that to identify as disabled is available to me because it doesn’t have to mean that I’m any less able or capable in the world.

Brianne: Yeah, and I think just a really quick synopsis of the first part, something that I love that I see floating around on the internet, that I am going to say wrong, but that a wheelchair isn’t causing your disability or lack of access. The steps are causing your lack of access, the wheelchair is a tool. And that being one of course of many. But when people start talking like that, you realize that this environment was constructed for one type of person and it’s servicing these other things. And I think the way that it relates to chronic illness can be so much harder because accommodations are so different for each individual person. And if you don’t already know the model, so if you don’t know what the ramp is, you can’t ask for it.

Like what you’re saying, as a person who really doesn’t benefit from waking up to an alarm, what does it look like to just sell that to an employer and say here’s the accommodation that I need, I need flex hours, and I need them to work this and this way, but I don’t even know all of the things. So it’ll be great to hear from people about either the limits that they’ve hit, even if they don’t know the answer, to get a better scope of the problem and the kind of workarounds and ramps that they’ve built, I think that’ll be really cool.

Natasha: Totally. When we work together, we can help expedite this process that so many of us feel we have to navigate completely on our own. For that beginning recovery years, I felt so alone and there wasn’t a person in my life that I knew that I could call up and actually seek counsel from because I have friends who love me and support me emotionally, but I didn’t have access to anyone who could give me concrete advice about how to manage some of these things.

Brianne: I think I’m kind of in the same boat that I wasn’t seeing things clearly for a long time, and I was just living. And I think back to my first job after school, and I was lucky because I was able to do this, but I worked from home so many mornings because it was so painful for me to get out of bed. But I didn’t see that as a problem. I knew that it wasn’t good, but I didn’t think that it was part of something bigger. Or I worked in a coworking space where I could lie down on the couch with my laptop a lot, which, again, was incredible, I just lucked into this. But it’s not normal to need to do that so often. And I had no idea.

And it’s incredible to me, just how many people are hobbling along right now, not seeing it. And so before you even have this lens of really a diagnosis or just the switch of thinking something is actually wrong that I can look for a name for, to seeking a diagnosis. All of the time before that, it’s awful.

Natasha: Which I think is beautiful, the way you even construct these conversations is to really demonstrate those chapters. And I couldn’t have come close to being in a place to do disability advocacy when I was in the height of not having a clue what was going on in my body, which it sounds funny even say. But that was what was going through my mind at the time was somehow, I think to make myself feel better about the fact that I was going through this, was well, if I could just somehow help people. And this might be like a white savior complex too, just these things that get ingrained in your mind about always needing to be helping people. Or a female issue, I don’t know. But for me, that distracted me from being willing and able to just take care of myself at the time and trust that I was going to get better. And that in time I was going to be able to participate in ways that I wanted to in the future.

Brianne: Yeah, you have to go through it. There’s a lot of things like that, I guess, grief is kind of the same way. Although there is a lot of grief for, I think, for bodies. You really just have to feel it before you can support people, you can’t support people from the middle. Not that this necessarily ends, but you have to really see an arc for yourself, I think. That’s definitely been my experience and I think it sounds similar. Because it takes up so much bandwidth and it still does, but a lot of this stuff turns into a habit.  What you’re describing about your mornings is you have to really carefully construct it and choose it every day for a long time. And then it can become a habit, but it gets shaken out so quickly because it’s not anybody else’s habit.

Natasha: Yeah, yeah, no. I end up realizing first I have to discover something for myself. Then I need to fold my partner into it. And then I need to fold my close friends and family into it. And then everybody else maybe, if necessary. But that if I didn’t understand that sequence, and I started trying to tell a coworker about something that I was just figuring out for myself, that I was going to end up in a conversation that I did not want to actually be in. Even though mentally, I might feel like I want to talk to someone about this, I want support in it. I had to learn to be a little more protective of myself and who I talked to about certain things when.

Brianne: But I think there’s also a huge language problem around all of this. And so when you’re starting the conversation with an acquaintance or someone who, for whatever reason you’ve just been introduced to but it comes up, is you have to take so many steps back to just have them understand what you’re talking about. Because what people think when they hear any of the words, we just talked about disability, but when people hear pain, when people hear fatigue, when people hear all of these words, the way that they interpret them is probably not the way that you’re using them. That’s definitely been my experience. When I say that I’m tired, what I mean is that all of my skin is on fire and my lymph nodes are throbbing. I don’t mean I’m a little bit drowsy, which is what you are hearing. It’s not what I’m saying. And so those people who are in your inner circle, and who you just described, your partner and close friends and family, you have to work on getting them to hear that when you’re talking because otherwise, that conversation just balloons. So we have huge language stuff that’s missing to describe these kinds of symptoms, and it’s a topic for some other time, but I think it’s a big problem with medicine that you go to a doctor and you say you hurt and you’re tired and they hear whatever they hear it.

But doctors, they are doing their best, and sometimes it is not helping. Okay, that’s my rant at the end of your analysis of where you’re at. I don’t think I have any more questions. Thank you so much for sharing. I can make sure to share the links and stuff, is there anywhere that people can go look this up ? I know your project will be on Medium.

Natasha: Yes, it’s on Medium. It’s Medium.com/Tech-Disability-Project.

Brianne: Okay, awesome. And I will figure out how to make sure that’s included in my show notes, which I’ve done in the past, but I’m restarting for this project, so I’m getting it started. Okay, thank you so much for your time and for your patience with my early tech issues. I will go and check out this recording now, but I think it should be good. And thank you for opening up and taking the time to talk to me. I’ll let you know when everything is ready to go.

Natasha: Perfect. Thank you so much for the opportunity and the work that you’re doing to advance this message as well.

[guitar riff]

Thank you for listening to the third episode of No End In Sight! I’ve got more great stories lined up for future episodes, so make sure you subscribe in iTunes, Google Play, or wherever you get your podcasts.

Don’t forget to check out the Tech Disability Project on Medium! Natasha is in week two and I think I have a post coming out soon, so head over there and make sure to subscribe and clap for any and all posts that speak to you.

Otherwise, if you want to commiserate with me on twitter, you can always find me @bennessb. And if you want to share your story with me, just click my bio link there to schedule an interview. I would absolutely love to hear from you!

Plus, I recently started a Facebook Group called Chronic Hustlers, for people living with chronic conditions who are self employed. So if you’re freelancing or running an etsy shop or managing your own fortune 500 company, I’d love it if you joined!

Last thing:

This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. For me, cross stitch is a perfect way to occupy my mind and my eyeballs during flares when I mostly watch long tv marathons. I’d love it if you checked us out at digitalartisanal.com