Episode Transcript
[00:00:00] Speaker A: Foreign.
[00:00:06] Speaker B: Welcome to Disability Empowerment Now, Season four bonus episode. Who's counting now? Anyway, I'm your host, kid refugee Consini. Today I'm talking to Jessica McLean.
Jessica, welcome to the show.
[00:00:32] Speaker A: Hi, Keith. Thank you so much for having me.
[00:00:36] Speaker B: So we met in a very interesting way on a social media site because that's how people meet these days.
You're a poet and a writer who has a disability.
[00:01:02] Speaker A: Yeah, exactly.
So I was born with Ehlers Danlos syndrome and spina bifida occulta hypermobile. Ehlers Danlos syndrome, most likely it's. The diagnostic diagnosis for EDS is really difficult. The genetic testing is like 10,000 or, you know, thousands of dollars, and just the appointment is $2,000. And.
And then there's no genetic test for the most common type that I've.
I've tested for the way that is allowed to be tested for that one or the way that there is a test. So it's like a clinical test for that one. And it's a sheet of paper. And, you know, there's all these different criteria, different sections, and you have to meet two or three or however many from each section. And so that's the diagnostic right now for hypermobile. And then spina bifida occulta occulta means hidden. So there's a gap in my vertebra, and it's not really very outwardly noticeable. I mean, there's some little things that you can see and then that can cause between the two conditions, I have a bunch of comorbidities. Now, EDS is kind of a condition of comorbidities. And then spina bifida occulta also can, of course, cause more low back problems.
[00:02:23] Speaker B: So what exactly is eds for those who don't know?
[00:02:31] Speaker A: So that one is kind of complicated.
It's a tissue connectivity disorder, and it involves faulty collagen production.
And so it involves every single system in the body.
You know, the eyes, the skin, the organs, the joints, the bones, the veins, nervous system, you know, every single part of your body, teeth.
So, like, we'll have problems in those areas in every area of the body. And certain types of Ehlers Danlos syndrome, there's over a dozen types of Ehlers Danlos syndrome subtypes.
Some of those have different pronunciations, like a more dramatic pronunciation of certain comorbidities than other than maybe another some types. Maybe your skin is more affected, like the classical type or hypermobile. Maybe your joints will be more affected than other types.
[00:03:34] Speaker B: What would you like finding out? You had these conditions and how did you process that?
And how did you eventually adapt your life to living with those convictions? And then all the com.
Yeah.
[00:04:05] Speaker A: So each diagnosis is sort of a new adaptation. And each diagnosis is like what you're saying it's another hit.
It's more pain, it's more adaptations, it's more disability, it's, you know, losing more friends, it's losing more abilities and more life, really, and capabilities that you.
It limits your life so much, you know, to a certain degree that you can't almost do much of anything. So finding out about each diagnosis was hard. I was a child when it all started.
I had tubes in my ears as a baby and then frequent bronchitis. And I was motion sick.
I was in physical therapy for my knee. I had Ashgood Schlatter syndrome and my kneecap was off track. Tracking issues are common. That was when I was 12.
And then I got like TMJ in my late teens.
And psoriatic, no, SIBO psoriasis. That eventually turned into psoriatic arthritis just recently.
And I was maybe 17 or something when I got diagnosed with SIBO psoriasis, that's autoimmune condition.
And so it just kind of snowballed from there. Tmj. Well, I had my first migraine when I was seven years old and I vomited from it when I was seven years old.
And so migraines are common for people with EDS, so each seven. So I was taking prescription migraine medication at 14 years old. So the doctors were prescribing me.
Wow, very intense, you know, medications that a 14 year old probably should not be taking.
And then I started to have to take preventatives soon after that. And then I was taking some anti seizure medication for a while that was making my numbs, my limbs go numb. And I mean it was the, the side effects of that were.
Anyway, so it's been, you know, a journey. And then my back broke when I was taking care of my elderly dog. So I have bilateral vertebra fractures on that same vertebra that has the spina bifida. And they say it's weaker. So I was taking care of him. I fell asleep on my couch sideways for two hours.
I mean, it was a comfortable couch and I was just positioned incorrectly and that broke my back. And now I have cysts in my low back filled with spinal fluid.
And those are called tarlops cysts. And there's only three neurosurgeons in the country who treat those. And they're not actually curable.
They're only treatable and really they're not. The treatment is riskier than the condition and it will not cure it. So it will come back. The treatment. So it's like you're risking, you know, you find these three neurosurgeons in the country to treat it. You get it treated and then it comes back or you're worse off than you were.
And then I have spondylolisthesis, which is like a shifting and that kind of runs in the family.
So, yeah, it's been very difficult. They say that you have to oscillate between acceptance and distraction.
And so I've done a lot of that, like going out to live local music here in Prescott.
And it's just a vibrant community. I'm a writer and author and competing in poetry slams, you know, to bring awareness to my conditions. And so we just have to do our best. But then the reality of it is sometimes our best is not going to be good at all. And sometimes the pain, like last night, I was just crying and literally just moaning and wailing for hours. And that's not normal for me, but I was just laying still.
I had stretched too much the night before. And sorry about all the ums. It's a lot to process.
[00:08:08] Speaker B: Yeah.
[00:08:09] Speaker A: And to, to feel in your body all of the time and to always have problems and always have things happening. So I think so. Things like hot tubs have helped me a lot and medical marijuana has helped me a lot. I'm not on any prescription medications anymore at all. I'm 42 now and I have way more conditions than when I was a teenager and was already beginning my prescription medication, you know, regimen, I guess. And so for me, natural things have been imperative.
Spring water, healthy food, anti inflammatory food, hot tubs. I did a cold plunge a couple times, but it hurt my chest and heart and heart symptoms.
Heart conditions are common for people with eds.
So I talked to a heart doctor, actually. I met him at the courthouse here in Prescott.
And he immediately knew, sorry, that's a.
[00:09:11] Speaker B: Very strange and weird place to meet a doctor doctor.
I mean.
[00:09:25] Speaker A: We became friends. He. He came up to me with his dog and he. I had a mat on the, like a thicker mat, not a yoga at, but a thicker one on the grass.
And he knew I had Ehlers Danlos syndrome. He knew I had eds. Just looking at me, he said, do you have eds? And I was like, yeah, yeah, I'm. I'm a.
There's. So EDS is a spectrum condition.
[00:09:46] Speaker B: Yeah.
[00:09:47] Speaker A: Someone like me is like way further on the spectrum, you know, worse off with the condition. And so somebody else with Ehlers Danlos syndrome could be relatively healthy. And so you might judge somebody else with EDS as, you know, being a hypochondriac, which is incredibly common. Munchausen syndrome.
Children are taken from their parents all the time. So anyway, he met me at the courthouse and he said, do you have heart? Does your heart kind of flutter sometimes?
So he already knew my condition and my heart condition before I said a word, my heart symptoms. And that's not normal for people with eds, but it's because he's a cardiologist and he's seen a lot of patients with EDS because heart conditions are common for us.
But other doctors do not know about eds.
They don't know the comorbidities. They. I go in and get my blood drawn, and I try to warn them about how fragile I am.
And the person drawing the blood has never heard of eds.
So it's kind of dangerous for us.
[00:10:57] Speaker B: What is kind of dangerous?
[00:11:01] Speaker A: Just living. Honestly.
[00:11:05] Speaker B: I get hurt to put words in your mouth. That's why I asked.
[00:11:13] Speaker A: Medical treatment is dangerous for us. Medical testing, medical, you know, anything medical is dangerous for us. If we get prescribed a new medication, we're probably going to have some serious reaction.
If we get, you know, a surgery or some other treatment, it's probably going to cause more things than it's going to benefit. So, you know, even limiting that, that cardiologist told me to stop seeking diagnosis and to find comfort. So he pretty much said, don't come into my office. Don't find out what your heart condition is.
You have enough diagnosis. You have dozens of of diagnosis already. I have three kinds of arthritis. I have osteoarthritis, arthritis in my neck. That's called degenerative facet anthropathy. And then now I have psoriatic arthritis.
My nails have, you know, have been having issues and growing into my skin. And so that adds, like, another layer of pain. Trying to manage that, that's the only prescription I have, is like, topical creams. At this point, a lot of people with EDS can't manage that. And they're on a whole list of medications from their doctors, and they're getting all sorts of injections and treatments. And sometimes those things can help, but sometimes they can make us worse, too. And it's difficult to know where the line is.
[00:12:40] Speaker B: So how did you become a author and a book poet?
[00:12:47] Speaker A: Well, I became a writer. I started working in marketing out of college, and I interned at Honeywell in their marketing department when I was still in college before my senior year and then started working in marketing communications and writing press releases and writing marketing stuff and emails and all sorts of things, flyers.
And so then I. Well, I started writing poetry when I was young, you know, in, in elementary school and I won a poetry contest in like fifth grade.
And so I think I've always been up that alley. And then when I was a senior in high school, my teacher.
[00:13:29] Speaker B: Hold on, so you've always been a poet? You1 poetry slam content when you were in elementary school and that was the proverbial bug that bit you.
How did you become the author in what do you write besides poetry or indigenous poetry?
[00:14:15] Speaker A: I write just about everything. So I became an author.
I had bumped my head. So people with EDS don't heal like other people. And if we get a head injury, we're probably not going to heal like other people. We're going to need more rest and doctors probably aren't going to be aware of that to give us that advice.
And so that was kind of what started the book. I had moved. I, my, I was really brain injured. I wasn't really moving around and going out and doing things all that well.
My, I wasn't in a great place mentally. My mom passed away and she was bedridden and sick and sort of just died one day. And her autopsy kind of said tachycardia, but that's not really a cause of death. So. So her autopsy is pretty inconclusive. We think it might be chemical related.
And then I got her laptop and it had a document from my grandma that said Chuck and Jerry, A love story.
And it was about 12 pages long and it didn't have like dialogue really in it or anything. So I just took that and that was what started the book. And I started to find other documents written by like my other grandma and my great uncle on the other side.
And you know, I knew some things, of course, and I had a bunch of pictures, so I just started to piece it all together.
[00:15:38] Speaker B: Until you added on and finished the work, the ridgeon work left by your mother and your grandparents.
[00:15:55] Speaker A: And my grandma had like folders of different, you know, the cabin, the old cabin houses that. My papa was a home builder, so different things.
Ms. She was Mrs. Arizona. So Mrs. A folder for Mrs. Arizona and had all these cool old pictures. And sometimes there was even documents, you know, that were in there that, that were helpful as well.
You know, all that little bits of information can really be helpful. And yeah, I, I took her document and, and added to it. Sometimes I Used some of her own words.
[00:16:32] Speaker B: So what is that book called?
[00:16:35] Speaker A: Oh, it's called Arizona Rain.
[00:16:38] Speaker B: Arizona Rain.
[00:16:40] Speaker A: It's on Barnes and Noble and then for sale here in Prescott at like Charlotte Hall Museum, if it's still there. Peregrine Book Company, really beautiful bookstore.
And then on Whiskey Row at a museum, Prescott Western Heritage center. And then at Fitbin Museum, a really cool cowboy museum.
[00:16:58] Speaker B: Have you always lived in Prescott?
[00:17:02] Speaker A: Well, my grandparents built cabins up on the top of Mount Tridle, which is about 30 minutes outside of town here. Real rustic. So I grew up going there and when I was a kid I lived in kind of the Glendale, Peoria, Phoenix area.
And then I moved to Camp Verde for about five years. And before my back broke and before my head was quite as bad, I lived in my RV for about a year with my ex husband and our dogs. And we were really adventurous and had a great time.
[00:17:33] Speaker B: Nice.
And so you mentioned that you were really chemically sensitive.
Can you talk more about that and how that manufacts and what severity is like? I mean, you mentioned last night you are in extreme pain, more than you've been in a while. And I mean, that just sounds awful, horrible and extremely taxing.
[00:18:23] Speaker A: That can be. Yeah, I was. It was literal head to toe pain. Every single part of my body hurt. Fingers, hands, legs, arms, toes, everything hurt. And yeah, it can be taxing and difficult. I try to not get to that point, but.
So what was your first question? Sorry, I thought. My train of thought.
Oh, yes. Okay. So that developed. It was always, always kind of there, I think in the background or the susceptibility to it was. I was detecting like the, the burns around here, the pile burns that the forest service was doing. And I was getting sick from these small pile burns. And I called, I talked to the burn boss and he was like, you must be chemically sensitive because this is, that's really sensitive.
And so then I. There was some construction projects and different things around me and I started to like get this funny taste in my mouth around chemicals and coating on my tongue. And then like I would even my nose would bleed and I would even spit up blood. And then I started to lose weight and so I, I weighed like maybe 150 pounds or something when the chemical sensitivity developed. And now I'm down to about 110.
And so I've. In a short time I lost enough percentage of my body weight that the doctors are, you know, that's an alarm. If you look it up, that's like death. If you look it up.
So, you know, it was. It was really scary. And then I started to develop other symptoms where I would get a headache from it and I would get stomach symptoms and wouldn't be able to hold my food down or whatever sometimes. And one time I ended up in the ER and I couldn't walk after vomiting so much, and I needed potassium to stay alive, really, and needed to rest quite a bit after that.
And so that was a real intense exposure. That's happened a couple times where I vomited and I tried to go to the hospital here once in Prescott, that was when I was living in. Or I was over in Sedona one of the times. But here in Prescott, the hospital is kind of in a chemically area, and then the hospital itself is really chemically inside. I can just smell this funny chemical smell.
So I tried to go there one night and I ended up vomiting when I got home anyway, so. And I just waited and waited and waited and then just came home. So it's kind of like you just have to leave.
The bad air is what most people say.
Some people say that chemical sensitivity isn't real, but I absolutely know it is. And there's.
There's times where I will start to detect chemicals and then I will leave and I'll see, like, a bug vehicle, like a bug spray pesticide company or a painting company or a roofing company, or, you know, something like this where it's confirmation. I don't think I've ever actually been wrong when I've detected the chemicals.
[00:21:40] Speaker B: How do you manage?
How do you get through your day?
How.
How do you, for lack of a better term, enjoy life?
Well, because everything you've said, I can't even fathom not to sinking in to a deep depression.
[00:22:13] Speaker A: Yeah, it's.
It is so difficult. So I've competed in, like, the Prescott Poetry Slam and won first place. I've gotten really involved in the local music scene here and done karaoke and, you know, made friends with a lot of local musicians to where I fit in because of my creativeness and.
And so it's really fulfilling. I live in a.
Even though I have to leave a lot to get fresh air, there's a lot of deer and wildlife that come through my yard, and so that's incredibly comforting. I wrote a blog for the Christopher and Dana Reeve foundation called Wild Care for no Cure, about, you know, kind of just drawing comfort from the deer and the wildlife and even singing to the deer. And so it's just always trying my best. But then, you know, there's a book that I read about oscillating between acceptance and distraction when you have this many conditions. And so you can't just distract yourself all the time with hot tubs and cold plunges and massages and it would.
[00:23:19] Speaker B: Be great if you could, right?
[00:23:22] Speaker A: It would be great.
No. And people expect you to always be positive. It's really strange.
[00:23:32] Speaker B: Jen Seger, why can't you always be positive despite all of your health conditions?
Why can't you be more positive? In case anyone thinks I'm actually serious, I'm not. I'm not at all.
If you just listening to this and can't view my handsome face, here's your clue that what I just said was pure sarcasm.
But that was what we were talking about before the break.
People expecting you.
And I think people expect this from a lot of people with disabilities, strangely, that we should always be positive.
So what is that like for you?
[00:24:52] Speaker A: It. It does feel like that. It feels like people expect you to be positive when they. They can complain about, like, their little problems that are occurring in their day, but then if I complain about something incredibly major that's affecting my ability to even survive and function, I'm, you know, bringing other people down or whatever. And, yeah, I get that I have a lot of stuff going on, so I do have to kind of manage that with other people in a way. But it's not exactly easy.
You know, my mom, she was just negative, and I would say, is there anything positive that happened? And now I realize that it is hard sometimes to even find one positive thing or to work on that neuroplasticity or to get your brain waves, you know, to get into some different grooves. And. And it does kind of. You do need other people, and you do need support and love and community and enrich. Enriching things. And you need a hand to hold comfort. You know, we're human beings, and we are even more so to a higher level, you know, suffering to where we do need comfort. And people will sometimes say, well, you're an adult, or something like that. And, well, yes, but I'm a vulnerable adult and I am in pain. And. And I do go back to a childlike state sometime because of the level of suffering that I'm enduring.
[00:26:21] Speaker B: What is that supposed to mean?
You're an adult.
So, I mean, that just boggles my mind. It's like when you become an adult, you don't suffer. Everyone knows that everything is PG keen in life, and it's just one powerful roller coaster of enjoyment and positivity all the time there's no such thing as a midwife crisis.
No one really gets divorced at all.
Again, sarcasm erect.
The fact that you're a adult does not negate the things you just mentioned that you clearly need and deserve.
[00:27:42] Speaker A: Thank you.
Yeah. Yeah. So a lot of people with EDS have, like, wheelchairs and a bunch of different mobility assistance devices, braces all over.
We'll have, like, special things for our fingers. I haven't gotten a lot of that.
I've just kind of been in a weird state where I've been trying to survive.
And.
And so, yeah, it's. It's a lot like you're saying. It's like I can't even address everything because there's so much to address. And so the reality of it is, is that it's difficult and I need help. And the sicker you are, the more people will drop you. The longer you're sicker. The. The sicker you are, the more.
The less support you're going to get. And so it becomes more and more and more of a challenge over time to where you're just by yourself, trying to deal with all. You know, a lot of people in my condition, like, live with their parents, for example, but, you know, I live alone, and it's. It's not exactly easy, you know, with a broken back and, you know, joints that just fall out of place. That's kind of what happens sometimes with eds. And so, yeah, it's not easy. And I do have some mental conditions as a result, and that will get judged as well. So I have, like, ptsd.
Chronic. It's called chronic illness and medical ptsd, Two different kinds. And the medical is, like, from medical trauma.
[00:29:11] Speaker B: Yeah.
[00:29:13] Speaker A: And so I was recently wrongfully. Title 36.
[00:29:22] Speaker B: What is that?
What did that mean?
[00:29:27] Speaker A: So I didn't know what it meant, but it means that all of your rights are taken and that you're put into a psychiatric hospital and you are locked in there, and you're not an American citizen with rights anymore. You're not a sick person with disabilities or illnesses.
You are a mental health patient, period, Subject to judgment, even if it's wrong. As a medical patient.
For someone with Ehlers Danlos syndrome who looks like I do, who looks healthy, it is incredibly dangerous to be put in that position.
They said they didn't have any of my medical records, and so my discharge paperwork said that I had fibromyalgia and that I was delusional and in psychosis, and I was delusional because I said I couldn't breathe. The air, because it's in an industry industrial area, this facility. And I was forced to go to this area that I drive through as fast as I possibly can.
And I have. These are. These are diagnosed conditions. I have X rays, you know, I have proof of all of these diagnosis.
And then my notes say I'm delusional and I have fibromyalgia. And I don't have any other conditions. As somebody with a broken back and a body that I got bruised from a massage the other day. I have a giant bruise on my leg and then I got bruised recently from bug bites, from scratching. Bug bites. As somebody who's that sensitive to not be accommodated, to be told that you're crazy and to be told that you're delusional and to be held against your will and to have your rights taken away and have none of your conditions accommodated is absolutely the most terrifying thing that you could possibly go through.
I wasn't given my mouth guard. I was all night long. I didn't have my mouth guard, so I couldn't sleep. My jaw was hurting. I was right next to all of these people. There was just lines of people and we were in beds all night long. And I'm sorry, chairs all night long. Reclining chairs. And so somebody with as many conditions as I have is just put into this random situation.
So there was people withdrawing from drugs. Obviously I don't take drugs that I'm going to withdraw from even though I have plenty of conditions that would justify that. But I'm right next to somebody who's withdrawing from hard drugs all night long. They're giving him more and more and more and more medications. He's becoming more and more delusional and. Or delirious. Excuse me. And he's flailing around violently, thrashing around violently all night long right next to me, jumping up. I'm jumping up into the corner and covering myself with the pillow that they gave me and that they made it seem like I was a princess because I got my pillow and there was people next to me with their arms and their necks cut up, completely thick bandaged.
Obviously, I've never, never done anything like that. There are intrusive thoughts. It's called passive suicidal thoughts. And so, you know, you have to have the proper support and love in order to help those passive suicidal thoughts and treatment and care from people around you.
But, you know, I'm not really getting that. I'm getting the opposite of that to where I'm being institutionalized. So I was released in less than 24 hours.
They kept telling me, you're gonna have to stay for 72 hours. It's a mandatory hold. You've been titled. What does this mean?
So I was picked up that morning. I had done music therapy and as part of work, and then I had driven the fiddle player home. And we had a nice time at this beautiful cafe for a minute.
And then I came home briefly, and somebody showed up at my place with a crisis worker and blocked my car in and started questioning me. And I was on my way to a massage appointment, so I asked them to leave. And then I called the person and said, you're making my suicidal thoughts worse.
And on my way out of my massage appointment, I was put in handcuffs by the police. They stopped me. I've never been put in handcuffs. I've never been put in a police car.
The handcuffs hurt my wrist. My wrist still hurts from the handcuffs.
They just stopped me. They just came up on me. I'm walking out of my massage appointment, and these police officers from the Prescott Police Department just overtake me and grab me.
And they don't say what they're doing.
I say, what is going on here?
What are you doing? Am I being arrested right now? And they say, no, you're not being arrested. You're being titled. I say, what does that mean?
Title 36.
They don't even explain it to me. They have no process for this. They just walk up to people and put them in handcuffs. People are. People who have committed crimes are given rights and red rights as part of the arrest process. But people who are wrongfully put into a mental hospital can't be told what. What's happening.
And then they made it a big deal that I needed my cushions. There's no cushions in the back of a police car. Apparently. It's just a hard.
So I needed my cushions, and they made it a big deal. And then when I talked to the police officer afterwards, he made it seem like it was a big deal that they let me have my cushions. They wouldn't remove the handcuffs.
I was injured icing my wrist for days afterwards. It's still injured.
And when I was taken to the hospital, I was smelling all these chemicals and telling them I'm being made sick, that the accommodations are not good for my back.
They make you wear these clothes. They make you put on these clothes, and they take all your things.
And the clothes were not good for my back.
They were hurting, pulling and.
And then even in the facility, in the psychiatric hospital, the. The phone is elevated off of the. It's like kind of like an old school payphone. And the cord is so short that there was no way for me to sit on a chair and talk on the phone. I was trying to call human rights organizations, Americans with Disabilities act and other organizations that are similar to that. And they were saying, this is going to take a 30 minute phone call. But I wasn't being accommodated to make that phone call. While I was in there they said, sorry, this is all we have. The same thing with the seats. This is all we have. Or the beds. This is all we have. And they kept saying we're not a medical facility.
Well, then why am I here? Why am I. Why is a medical patient not only being held against her will in a non medical facility and not being accommodated, but you guys aren't even aware of my conditions and don't even believe me and don't.
It's pretty much the most terrifying, you know, Go ahead.
[00:36:56] Speaker B: So you are supposed to be in there for 72 hours.
How did you get out in just 24 hours?
[00:37:10] Speaker A: Less than 24 hours. It was a triage situation is what the nurse practitioner said when she finally saw me.
And she said, you know that this facility is for people who have attempted suicide and who are withdrawing from drugs, right?
[00:37:25] Speaker B: Yeah. You should not have been there.
[00:37:30] Speaker A: No, absolutely not. I was sabotaged and antagonized.
The whole situation was antagonized. I was asking for help and I was punished as.
[00:37:47] Speaker B: I think your camera.
[00:37:49] Speaker A: Frozen chemicals or my needs, I'm punished for it. So my survival has really become dependent on my silence.
[00:38:02] Speaker B: That must be incredibly difficult and incredibly heartbreaking that you really can't self advocate for yourself because when you do, you run the risk of getting in trouble.
And we're back.
[00:38:36] Speaker A: Oh, good. Sorry.
My Internet.
[00:38:41] Speaker B: So as I was saying, that much be incredibly difficult and extremely heartbreaking for you because you can't really advocate for yourself because when you do, you inevitably put yourself through no fault of your own, in danger, in jeopardy.
[00:39:22] Speaker A: Yeah, I do. And then even sometimes I feel like, should I even tell somebody that I have chemical sensitivity? Because there's been times where it's been used against me and then I end up so much sicker and I can't stay where I am or. So I moved to Sedona for about nine months and I still had some chemical things there.
And when I would leave and try to go get fresh air elsewhere, I was having more issues. There was way more chemicals when I was out.
And then I got stung by scorpions there in the back of the head and on the knee. And that was over a year ago. And I can still tell that I'm not the same as I was before. My pain and other things, it was really bad initially.
And so it's like, I'll try to do something to better my situation, and then a lot of times it ends up, you know, I'll end up worse off or something.
It just. There's always dangers and. And people do judge me as like a baby, like I was saying, or, you know, how, like, a child will fall and they'll cry or something, and they're not really injured. But people with EDS can get.
And in spina bifida and brain injury, we can get injured very, very, very easily. And we are really, really fragile.
It's just the reality of it. It's. It's our genetics, our body, and we can't really change that. I mean, we can do our best.
So we were talking about positivity before, and I think my Internet or my. Something happened with my computer. But it is important still to try to be positive and to try to uplift yourself and be happy and find joy and find smiles and do all these things. Obviously those things are going to make you feel somewhat better, but it's just. The reality is you can only do so much.
[00:41:18] Speaker B: Let's talk more about your creative output.
You're a author, a poet.
You hang around a lot of local musicians.
Are you yourself a musician?
[00:41:39] Speaker A: I sing a little bit because of eds. I can't really play string instruments if you can see. My joints just fold.
And I used to have a piano, but then just with my neck and back, it wasn't.
So, yeah, I mostly just sing. And I'm thinking about trying something called the dulcimer. That looks like it might work for someone like me.
But, yeah, I like to write, and that's become more difficult with pain. So sometimes lately I've just been, like, saying a poem out loud and then recording it instead of writing it. And that has helped with my pain. My pain's gotten worse and worse with writing, and so I'm not doing a whole lot of writing anymore.
I'm. I'm working with a lady who wrote a book about her family, and I might be doing, like, the type facing and the layout for it for her, but just even being on the computer now is hurting me.
[00:42:35] Speaker B: Wow.
[00:42:38] Speaker A: Yeah, it's ridiculous.
[00:42:42] Speaker B: So what else you do 10 cope with.
[00:42:49] Speaker A: A lot of meditating?
I've listened to more meditations, guided meditations than I can tell you. And then I started to lead them myself, leading the guided meditations, just naturally, maybe thinking a little bit ahead of time about that. And then. So that kind of obviously flows right into writing, and it's just a different type of writing where it's a little less painful and therapeutic.
And then I've kind of enjoyed that, actually, the guiding, because it kind of gets old after a while. You've listened to thousands of meditations.
It's hard to. To continue to do sometimes.
So I do a lot of that. I listen to, like, YouTube stuff and watch shows and then, like, a lot of interacting with wildlife and walking and sort of getting out to. To smaller areas and quiet areas in nature and. Yeah, watching the music locally. There's great, like, open mics locally and just gigs locally with really awesome musicians, friends and friends of friends and that kind of thing.
It's. It's special. It's really, really special.
[00:44:03] Speaker B: Let's talk about feeling dropped or abandoned by people, because that can be extremely isolating. That can kick up depression or other thoughts.
[00:44:26] Speaker A: I might just move here. Yeah, my back starts to get sore and my legs start to kind of tingle, so I have to move around more than most. So the abandonment, you know, you want other people to have joy and live their lives and find happiness and, you know, read, lead enriching lives and things, but when you're this sick, you do kind of tend to get left behind a little bit, and everybody else kind of goes about their lives and they sort of forget about you and.
And they don't necessarily try to accommodate you or try to include you or. It almost seems like it becomes the opposite where people start to want to exclude you so that you're not hindering their abilities, enjoyment, freedom, options.
[00:45:31] Speaker B: Yeah.
[00:45:32] Speaker A: And people start to become almost annoyed with you, with your needs and even your rights. So it's almost like I don't really have rights. And people who use chemicals have more rights than I do on their, you know, property or on their body or different things like that. They have those rights. But then if I am sick to the point where I'm underweight and I can't go out somewhere or I can't be at home or something like that, my rights are not protected. I just have to go and leave and find fresh air.
And so with somebody who is disabled as I am, with all these different limitations and pain and all of these different conditions, that's like, almost impossible. And then it becomes almost impossible to survive. And so a lot of people with chemical sensitivity will look for housing for a long Time.
One guy, he was a lab chemist and he looked for five years. He hosts a podcast, a chemical sensitivity podcast.
And he ended up sleeping on his parents screen porch in Connecticut. He uses heated blankets to stay alive in the winter.
Yeah, that's how extreme it's literal life and death. And people wear perfumes or they have air fresheners in their home. And this is all poison, it's all toxic chemicals. And people are obsessed with like weed spray. That, that doesn't just hurt people like me, that hurts the planet. You know, that trickles down to the bees and the butterflies and the lizards and the birds. It, you know, my property is not like that and I have, I don't have a bug problem because it's an ecosystem that works together, a balance each other.
[00:47:35] Speaker B: I want to go back to something you said a while ago, that you don't look sick. And people have a hard time believing that. In fact, they would much rather doubt you than believe you.
[00:48:02] Speaker A: I'm cocking my nails.
[00:48:04] Speaker B: And isn't that in itself type of being objectified?
[00:48:18] Speaker A: Yeah. We had talked about objectification, hadn't we?
Yeah, yeah, it is.
That's kind of the theme of my life really is, you know, being objectified where people will think I'm healthy, they'll think I'm dramatic, they'll think I'm whatever, whatever judgment they want to make. I'm doing too much of this or I'm doing too much of that or not enough of this or I need to do that or I need to try this or.
And then, yeah, it does become objectification where I go out in public and women will give me dirty looks.
It's very common.
And why.
I guess they're threatened by my appearance maybe, or.
And then, you know, a lot of men will want to date me, but they won't want to help me really, or you care about me or settle down with me or include me in their lives or treat me like a human being and I just become this object for men and for women and for the world of, you know, this is who you are. And yeah, it just becomes exhausting really.
I'm asked out almost every day and typically they cannot accommodate me. And then they continue to push why they can accommodate me or how or I'm gaslight my condition or downplay my symptoms or, you know, whatever it is, it's an argument.
And.
[00:50:14] Speaker B: Argument even before you go out with them.
Oh yeah, like that builds a great healthy way to start a relationship.
[00:50:32] Speaker A: It becomes trying to convince me that my needs aren't valid or that they can be adjusted or, you know, those lines can be blurred or moved or, you know, just dismissing in some way. It's always like dismissing what I say.
And it's become to the point where I don't even want to tell people anymore why I'm not able to see them or willing to. Because nobody gets it.
No, even this whole interview, I feel like is going to be not saying anything bad about you, but just people will find a way to judge it and, and to turn it around to say, well, she was. They said she was delusional and she has fibromyalgia. Well, that must be the truth, you know, or whatever.
But then you do have to rise above it and know your own truth, know what helps you and love yourself and, and that's not easy when you're not getting a whole lot of love from the world.
But you have to keep trying.
[00:51:51] Speaker B: We've talked about a lot of topics.
[00:51:56] Speaker A: In.
[00:51:59] Speaker B: Episode, and I, I like to think, and I like to hope that both people with disabilities and those who have yet to discover or embrace their own disabilities listen and watch this show as my guest.
What do you hope that people with disabilities take away from everything we've talked about in this episode?
And what do you hope that those who have yet to discover or embrace their own disabilities take away from than something.
[00:52:54] Speaker A: So that's a really good question.
So I guess disabled people, I hope that they just realize that they're not alone and that their pain, internal and external, is valid and recognized and, and, and cared, you know, somebody. Actually people do care that you're hurting, even if you don't know those people, you know, people like me who are empathetic and empathic, we actually hurt sometimes when we hear about other people hurting and, you know, or cry or something, and it's.
And so there is that care within the community that love.
And then for people who haven't embraced it, just, I guess to just go easy on yourself and let yourself embrace your illnesses in your own time and in your own way. And nobody else can push you to accept, to. To have that perfect balance of accepting acceptance and distraction and oscillating between the two. And nobody's perfect.
[00:54:14] Speaker B: What do you hope that people remember about you and your story and what you've talked about and what you shared during this episode?
[00:54:35] Speaker A: Well, maybe what we were saying about not judging a book by its cover and always realizing that there might be something or a lot of things that you don't know about a person, and then also that Love is the only way. That's the last line in my book that even though I might screw that up sometimes and get angry, that that's always the goal.
And even if I am getting angry, it's probably because I'm asking for love.
And so that's really it that even if you get angry at somebody else, maybe try to think of what they've done for you that you could be grateful for and just always just trying to go back to love and non judgment.
[00:55:25] Speaker B: Before we go, can you tell again the name of your book and where someone can get it?
[00:55:37] Speaker A: Yeah, it's called Arizona Rain Adventures in Life, Love and Loss that Span Generations. That's the subtitle. You can get it on Barnes and Noble and then also in Prescott, here locally at a few bookstores and museums.
[00:55:52] Speaker B: Jedziga I want to thank you for coming on and for sharing your story or a bit of it.
I hope you will consider coming back on. It's been delightful to get to talk to you and I hope this episode is very helpful in letting people know that they're not alone, even when they're dealing with with so many health issues, other issues.
And so that's my hope for this episode. Have a wonderful weekend.
[00:56:40] Speaker A: Thank you so much for having me.
[00:56:49] Speaker B: You have been led by transitioning to Disability Empowerment Now. I would like to thank my guests, you, Glegzener and the Disability Empowerment now team that made this episode possible.
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