Episode 29: Too Many Health Problems and an Amazing Woman

Deborah Vick

About:

Deborah Vick is a proud mother of two young boys. She has and continues to overcome the challenges presented by Myasthenia Gravis, Ehlers Danlos, Dysautonomia, severe chronic pain, severe reverse kyphosis, and spinal stenosis. She fights these, as well as a myriad of secondary disorders, with the love and support of her family and friends.

Deborah volunteers with patient advocacy organizations to help raise awareness and promote education programs. Deborah organizes youth programs, improves accessibility in her local community, serves as a leader in the Scouting Community, and is a member of the Morgan Hill Leadership program.

Deborah raises awareness for legislative issues for the disabled population and the community as a whole. Deborah earned her B.A. in Political Science and M.Ed. with a focus in Higher Education and Diversity Affairs. Throughout her post-secondary endeavors and while in law school, she volunteered and interned in local, state and federal legislative offices as well as clerked for a judge in the EEOC and volunteered as a civil rights mediator with the Arizona State Atty. General’s office. She strives to show her children and people of all ages that we may need to adapt to achieve one’s goals but that we may never give up.

Damaged Parents: [00:00:00] Welcome to the Relatively Damaged podcast by Damaged Parents where crooked, distorted, bent people come to learn. Maybe just, maybe we're all a little bit damaged. Someone once told me it's safe to assume 50% of the people I meet are struggling and field wounded in some way. I would venture to say it's closer to 100%.

Every one of us is either currently struggling or has struggled with something that made us feel less than like we aren't good enough. We aren't capable. We are relatively damaged. And that's what we're here to talk about. In my ongoing investigation of the damage self, I want to better understand how others view their own challenges.

Maybe it's not so much about the damage, maybe it's about our perception and how we deal with it. There's a deep commitment to becoming who we are meant to be. How do you do that? How do you find balance after a damaging experience? My hero is the damaged person. The one who faces seemingly insurmountable odds to come out on the other side, whole those who stare directly into the face of adversity with Aneel deem persistence, to discover their purpose.

These are the people who inspire me to be more fully me. Not in spite of my trials, but because of them. Let's hear from another hero. Today's topic includes sensitive material, which may not be appropriate for children. This podcast is provided for informational purposes only and is not intended as advice. The opinions expressed here were strictly those of the person who gave them today. We're going to talk with Deborah Vick. She has many roles in her life, wife, mother advocate, and overall inspirational woman.

We'll talk about myasthenia gravis, ehlers-Danlos, dysautonomia severe chronic pain and many other health challenges as well as how she keeps herself mentally strong let's talk

 Deborah welcome to Relatively Damaged by Damaged Parents. I'm so glad you're here today

Deborah Vick: [00:02:08] Hey, thank you so much. It's wonderful to be here.

Damaged Parents: [00:02:11] now, for those of you that notice the joy in our voices. It is because we have been laughing, in our pre podcast conversation.

The bottom line is though, I think maybe we learn to find joy in some of our struggles here. And, preparing for this podcast has been challenging on both sides of the coin today. So, anyhow, Debra.

Deborah Vick: [00:02:34] It's wonderful to be here. And just to comment on that joy part. We use a lot of sarcasm in our household to deal with my calendars. And that's just part of our humor. I mean, we have to laugh about it at this point. I mean it's either laugh or cry right. And to laugh and my kids just make total jokes and laughter out of pretty much all of my challenges.

And then it's okay. I mean, that may not work for some people for us. It does. And it slipped my mind. The day I sat in a method that was not really conducive for somebody with Ehlers-Danlos. So getting out of that position, it was much harder than it was getting in. And I'm making all these funny sounds as I'm trying to pull my legs out from underneath me and my kids just cracking up, like he's just rolling around and it makes it honestly, it makes it so much easier when you're laughing about it.

Besides the fact that laughter actually releases , the, uh , happy hormones or the, where does that the oxi-

Damaged Parents: [00:03:34] Oxytocin.

Deborah Vick: [00:03:35] Yes. So we know laughter enjoy releases this. Right. And which is great, but also it's just, it also breaks the ice, right? It breaks the ice for discussion. It breaks the ice for the enjoyment.

And as a person who works with kids all the time, we make humor out of every of it, everything literally breaks the ice I'm online. I'm being recorded, sweetheart. That is my youngest son in the background who was in the same room for virtual schooling for COVID periods. So he's been, he's been home since.

Uh, March 1st of last year, right? When it came back from rare disease week, I took him out of school when I saw what was happening in my community since I am in the Bay area, in Santa Clara County. And which was one of the first areas not managing COVID that well. And so we had, we took both of my kids out because of my autoimmune diseases, as well as my other ones.

So yeah,

Damaged Parents: [00:04:26] Yeah. And that's, and that's another challenge in and of itself, especially with it, a disability, but would you explain to the listeners what Ehlers-Danlos is and how it presents in you and the challenges that you face because of it?

Deborah Vick: [00:04:40] Nope. Thank you. So Ehlers Danlos is a series of connective tissue disorders. Right now there's , 14 recognized DDS versions. And in my case, I have a hypo, at least the hypermobility type and once any connective tissue stretches, that's the collagen in our body that holds our ligaments and all of our joints together, as well as works within our organs it, once it stretches it, can't retighten

In my case, since I wasn't diagnosed until after about 15 years of the onset, all of my joints are affected. I pretty much. Do not have any joint in my body that doesn't sublux or slide out of place or dislocate. I mean, so sublux means sliding in and out where dislocating and he's actually popping out altogether.

And so in my case, I can't even feel that I call them platelets. I know they're not, but in our skull we have different parts of the bones. I can actually feel between those bones, that sometimes when they're moving and I coming from a science teacher, I'm a science teacher's daughter and STEM educators.

I keep on imagining it as the platelets, moving around on my head instead of the bones, but I can actually feel it moving in my case. Every vertebrae mind, I'm fused from C2 down to T2. But I have movement above and below, and now I'm going to be going back into surgery because one of the screws from my previous surgery, isn't embedded in between my C1 and C2.

And on the other side, I have severe stenosis from C7 to T1 compressing on my CA. So that's not, yeah, that's not fun.

Damaged Parents: [00:06:10] Right. So even your spine, it sounds like doesn't, move or stay where it's supposed to properly.

Deborah Vick: [00:06:18] I have heard of her. I have every part of my spine to my ribs, to my fingers, my wrists, my. Oh, there's nothing that doesn't pop at some point or move in some way. I might have a few toes that don't move, but pretty much every other everything else does. And I can feel pretty much every joint in my body, but it also affects me internally.

It affects my bladder. It affects my heart and affects my beams as well. So I have an intrathecal pump for pain management and have an having and have an internal port for my infusions that I get from other disorders. I don't just have Ehlers-Danlos, that would just be too easy to have one challenge.

I mean, we all have multiple challenges, right? So I just have a whole bunch of other ones. Ehlers-Danlos this has a whole like to call laundry list, but it's really just as long when I went to the EDS conference a couple of years ago, they had this whole page of all these secondary diseases that are related to Ehlers-Danlos or common women within people with EDS.

And I pretty much had like kids go down and check off almost everything that they mentioned. So, I mean, it does affect, and we have to laugh about it because we kind of have my kids joke around saying I have a crumbling body. That's kind of just failing me in every, which way that we can think of. My youngest will make maybe a sticker that says fragile easily broken because, you know, I mean, he's also made me really great labels where he raised, you know, best mom ever best artist.

I know a good mom and he wrote nothing is perfect pretty, except you. I mean, so I'm looking at some of these labels that I have that he's made for me which is incredibly sweet and prove that my mindset work that I've been working on, he's actually listening because I've been doing a lot of positive mindset.

And then since. He has ADHD stays in my office, which is really my bedroom. Most of the time is my office. Cause I can't, I have so much challenges. I just saw him on me and my neck right now that I spent most of the time in bed this past year. And I have a whole station up next to me, my bed and have him in here too, so that I can kind of keep one ear on what he's doing to be able to help him when he kind of forgets or misses where he doesn't hear a focuses on what the teachers are saying.

So I have to keep on reminding him what he has to do. That's okay.

Damaged Parents: [00:08:24] it sounds really neat actually, because you're learning in the family how to work as a team. And , I think that would be really important to connection and feeling supported on both sides. Like you may not be able to support him perfectly.

Deborah Vick: [00:08:39] I always joke around saying I I have the lottery for rare diseases, but I also have the lottery for really awesome family. So my kids and my husband are very, very supportive. I mean, even my 15 year old, although I only see him in the passing of my bedroom, he'll come in and check on me to see if I'm okay.

And like, one of the times he goes, I know COVID has a really emotional challenge for all of us. Are you okay, mom? And it's just like the sweetest thing, because he's not that social of a person, unless it wasn't through computer games. Right. He's just a typical young man who is a computer gamer.

Right. So their social interaction is pretty limited to society. It's like, I kind of say natural habitat as his bedroom in a computer game. But he will take in on me even like, especially if he hasn't heard from me for like all day, I'll be, I haven't heard, are you okay? What's going on in there?

Or he'll check in my kids also went to the part that's guilt makes a mom feel guilty. I'm not as always have something they don't feel great about. Right. I mean, it's just motherhood, but we're always going to question whether we've done something right. And I have disautonomia

I can't drive anymore. And then I have my senior gravis, which I'll explain in a minute, but having all of these challenges means I can't mother, the way that I used to be, and I can't drive and take to all the extracurricular programs and activities that I used to be able to do. So I always have that, you know, thing, not, not that I'm not a good mother, but that I miss the things that I used to be able to do with them.

And so they'll just keep in their mind. I, I probably can't, I'm not going to send something there, cause I don't think I can say this word on there, but they would come to me about it. I don't want to say the, but that's what they was. They they'd call me that. And my kids are very supportive of me, but they're also many times become my caregiver.

There'll be times where they will actually have to bring me food and they'll bring me drinks and they'll make sure that I'm or yell at me if I'm not drinking or eating, you know? So they'll be like, you didn't eat. I made you this food. Why aren't you eating? You know? And so there'll be checking in on me for all those things.

And they actually even know I do my fluids at home as well, so they know what I need and they'll bring me up all the stuff that I need to do my fluids and every excuse me and all that good stuff. So yeah,

Damaged Parents: [00:10:44] Yeah, that's pretty amazing that there, I just love the teamwork and the connection that you guys all have together. I mean, what about you? You also used the word guilt and in relation to not being able to do, when you think the normal. Mom would do or

Deborah Vick: [00:11:02] quote unquote normal. All right. It's

So in their eyes, they think it's great. I mean, in their eyes, I'm awesome. Their eyes, they see all my challenges and see that I'm still trying to do all this work in the rare disease community. Cause I'm an advocate with a variety of programs and starting my own business to also do advocacy and empowerment work.

So in their eyes, they see that they think I do too much, or I think I don't do enough. Right. But they think that I'm this amazing person who's doing all this stuff to give back. Cause I also volunteered in the school is still doing digital doesn't meanings for scouting and merit badges and all that kind of stuff.

So, and then arise. They see me. As, you know, I mean, I guess most kids also see the moms and stuff, as it was wonderful people. And so in their eyes, I'm this amazing person who's keeps on giving back to everybody. And so that makes to them a great role model. And for them, they also see how I practice this mindfulness, not, I don't just say it, but I practice it in our daily lives.

So from a different level of respect for me too. And in that, sense, I mean, even with my older son, I've been his scout leader since he was in first grade.  And  he's now in ninth grade. So he's had me as a scout leader for eight and a half years and, and my youngest son as well.  When I started scouting, he used to be in a sling on me, you know, when I would be at meetings kind of a thing. So it's. They're used to me always being around whether it's steam program or scouting or my programs. So that's great to them, but for me, I know what I used to be able to do.

And as my disability is, keep on piling on, especially when, my myasthenia gravis has kicked in and decided on me, I kicked in and not being able to drive. There's a guilt of not being able to get out of bed or get downstairs or celebrate birthdays the way that I used to, because I'm a creator and a crafter and not being able to make the cakes or the cookies or whatever it is.

I mean, even for Hanukkah, they had to bring the menorah up on a cookie tray from me, so that, cause I couldn't get downstairs for eight, seven and eight nights. I wasn't even downstairs. Oh my God. Downstairs at the very end, because I had to get downstairs from my infusion. Cause I get home infusions with the IVIG.

So that was the only reason why I got downstairs. So they had a, you know, come up to me for everything and having not the best to balance a manure on a cookie sheet on a bed. So we lit it and then blew the candles out. So we wouldn't have a fire, but , they definitely work with me, which is great.

Cause I mean, there are times that I think, and moms are great at feeling like guilt. When we joke being that Jewish moms are really good at guilt So we joke about these things, but reality is is that they still see all the other wonderful things that I do. So in their eyes, I'm this amazing thing.

And I'm still trying to learn, not to judge myself based on what society determines, what we're supposed to do versus what I can do. Right. And this, one of the things I try to teach is setting our goals based on our own abilities and the abilities. May change, right. Being dynamic and setting our goals because reality is with multiple rare diseases, multiple autoimmune and, disorders necessary, functionality changes, not just day to day, but sometimes moment to moment and having to be fluid and setting those goals and not judging yourself for not meeting some unreasonable expectation.

Right. I mean,

Damaged Parents: [00:14:10] Yeah. how do you set that though? Because you know, in the moment you said it. I would think you feel capable of being able to do it. And then when it, then the time comes to, to reach that goal , and it's, maybe your body did something that you didn't expect and now you can't reach that goal.

So how do you deal with that inside? Like, what's your thought process and how might

Deborah Vick: [00:14:32] So I learned to not judge myself on that. And I learned that I have to be able to change my goals. So that's where the dynamic studying or the fluidity in goal setting comes. So I actually wrote a little article. I've only had a couple articles that I wrote for the mighty, but two of the three that I submitted, or three of the four, something like that  were published on the mighty.

And one of them was earlier in COVID period when it was about fluidity and goal setting. And I have to learn to be able to just to change my goals at the moment. And it's not an easy thing to learn, to change a goal, and so for me, it was learning how to. Be okay with not being okay. Is like the first thing. Right. It's okay to not be okay. It's okay. To not be able to do something and then learning as long as we're moving forward towards that final journey, whatever that may be. That's all good. And that's the success in that and that in itself.

And don't get me wrong. There are days when I think I'm going to accomplish like 20 things on my list, because I'm just a little bit of an overachiever. And I'm a still type A New Yorker despite having been out of New York for 25 years, I still have that mentality. And there are plenty of times that I make that goals for my day.

And I have like a list of 20 things and I decided to clean up an area under my desk kind of a thing. And then I'm done for the day, right? I mean, just getting up and moving is not going to happen. I've used up all my spoons of energy, probably, depleted the next three days worth of spoons. And I just have to be okay with not getting it done and saying, you know what?

I got something done. It may not be a lot, but I got something done. That's good. To remind myself to celebrate whatever small achievement I have, because I always think of small achievements, right? Or these little pebbles that will eventually become rocks. It become boulders that become the foundation of something bigger and better and ultimately it's a movement and the direction

Damaged Parents: [00:16:18] Could you explain to the listeners who don't know what spoons are

Deborah Vick: [00:16:22] Sure. I was really, I realized as I was saying spoons people might not know that. So in a lot of chronic illness communities, we use what's called the spoon theory. And I believe it was written by a person with lupus it's actual explanation. This person created as a description of what it's like to live with a chronic illness and chronic fatigue and all these other things that build on top of our illnesses, with Ehlers-Danlos and with dysautonomia and myasthenia gravis, all of these have a hugely draining on our physical strength as well as our mobility.

But also just training on the ability to have any energy is causing chronic chronic, if not chronic fatigue syndrome, at least symptomatic of chronic fatigue syndrome. And spoon theory is really a method of explaining to people what it's like to live like this. And we use spoons to represent energy or batteries.

I mean, even you can think of it as batteries. You might have 10 batteries for the day or 12 batteries for the day, or we use spoons. Cause it just, I don't know, it's a cooler thing because that person's stories become really well and widely accepted in the chronic illness community as an explanation of the challenges we have.

And you might say, if you don't have these illnesses, you might use one spoon getting ready in the morning, getting dressed, showered, clean, you know, hair done, whatever, what have you, any breakfast forest going through traffic and getting to work, whereas. For me, I might use all 12. If I get showered, wash my hair, do my hair, blow dry my hair, get my makeup on and get dressed.

I probably use all my spoons for the day. That's a huge accomplishment to get all those things done in one day. For me, I joked. In fact, the other day I had done that to get to go to the dentist. And I actually told my friend, I get a trophy today.

Damaged Parents: [00:18:06] So I'm, trying to think back to think about how a, uh, able-bodied or capable person or normal, what, what society considers normal might think of spoons and overusing their spoons. So I'm thinking

Deborah Vick: [00:18:20] I like to correlate it to when somebody has the flu, because it's really hard to explain fatigue. It's really hard to explain that loss of energy or that drain on our body. And so my husband was very able bodied relatively able-bodied. When he gets the, had the flu, he couldn't barely get out of the bed, you know, when he was really sick.

And I said to him, well, that's kind of like how my daily life is. And he's like, it's really like this. And they go, well, actually kind of. Yeah. And if I have an infection, it's worse. Right. And so I tried to explain it it's unless you're in somebody's shoes, you can't really truly know how they're feeling, but we can be empathetic at least in part to what somebody is feeling.

Right. And I will say, even having worked in a disability community since I was in college, I still didn't truly know what cognitive challenges were until I developed them. Even though I knew it didn't truly feel it until I started having it. So I know we can't imagine what the loss of energy and how much energy it takes to do something is, but I do like to say, well, think of the time that you've been really sick.

Think of a time that you've had the flu or some major infection that you just really couldn't even get a bed that it was so hard to just move. And the concept of just sitting up was sometimes overwhelming, right. Or to cognizant to get dressed is just like, was not going to happen. Right. It was just, you tried to get up or you try to sit up or you're trying to move in and you're like, yeah, Nope, not happening.

And that's what I imagined would be the best way to describe what it feels like when you've used up your spoons. It's just not happening when you need to get out of bed. And I use the spoon theory to help my kids when, especially when they're younger to understand why mommy is not getting up today or mommy's not getting out of the house.

And I always think back to the story of when my younger one, we talked about and going roller skating, we talked about us going out and my dog service dog pulling me and my chair and my hand cycle comes like, we're kind of like a little lush sled there. He's not only helps pull me, embrace me, but he picks up things off the ground. For me, he is also a medical or dog for me as well. So with my dysautonomia, I do pass out a lot. And he alerts me and if I listened to him and don't try to keep on pushing passes, alerting, then I can help quite a bit.

Uh, I don't always listen. And so then typically I do end up passing out when I don't listen to him,

Damaged Parents: [00:20:35] okay. So hold on, hold on. So dysautonomia. So you

Deborah Vick: [00:20:39] okay. Right. So I have pot is referred to pots. There's different types of dysautonomia and decided I'll make a fi it's really meaning, dysauntomic dysfunction, right. automonic system doesn't properly work. Right. And so in my case, my blood pressure drops. When I'm sitting up right now, I could get my blood pressure sliding down.

I normally sit back, but for whatever reason, my camera's focus like now I'm like, my camera's focused. Like it wasn't focusing. So I normally have to be in an incline where I'm sitting up without, you know, so I could still support my neck. I do have a neck brace, but I can't see it where it is at this exact moment.

So,  my blood pressure will normally drop. So it'll drop pretty low. I've had cases where it's dropped to 60, over 30. And

then as soon as I get fatigue, it starts to go lower and lower and lower when it gets anything over below 60, you know, from my, uh, Systolic, which is then the lower number I keep on forgetting.

Damaged Parents: [00:21:32] diastolic and systolic. And I don't know which one is which,

Deborah Vick: [00:21:35] I mean, I'd have a blood pressure machine somewhere nearby, but yeah. So when my lower number gets to 60, I'm typically getting starting fading and then I'll speed in and out. So, and I joked and when you're on a zoom call and people know you have dysautonomia, you wake up and they're still there. So I've had zoom meetings where I posted from my friends and I pass out and then I wake up and everyone's still there.

I'm like, Oh, you know, that's when they're all, that's when you know, people are used to, you're dysautonomia and everyone's still there after you pass out. But, I've, ended up in the hospital and ambulance is more than on numerous occasions because of my dysautonomia.

And not being able to be woken up and so forth.

Damaged Parents: [00:22:12] right. But the dog. Tries to warn you Peta the dog. Right. So how does he do that? Does he bark at you? Does he nudge you? Like, is there a certain specific thing he does

Deborah Vick: [00:22:22] He starts with nudging and , and then pawing at me and then barking at me. So it's a process. And usually if he starts to, and also it's versus sometimes it'll be just simply standing up versus sitting down, like normally he's in a down sit or down. And when he's standing, he's either worried about me because of my pain or is worried about my breathing or it's my dysautonomia acting up.

But then he'll also bark. So a good example, we were in Hawaii a couple years ago after my son's bar mitzvah. And we had a timeshare down in there and. I went on the water. I felt, okay. I had a lifevest on, I had a buoy under my waist and I started swimming. I felt fine actually. And I actually was like, Oh, I'm I going to go past this line over here

I was. I mean, I felt okay. And the dog was just barking, like crazy. My husband's like, you better get back on the boat. And I felt okay. And I didn't want him to get back in the boat, but you know, the dog and my husband telling me I was like alright, I better get back on the boat. I did. And I passed out within a few minutes of getting back on the boat, but he knew even being 15 or so, feet away from me, he still knew what was happening.

He was that much aware of me. And he can tell that. And whether he's right next to me, or he's further away separated by rooms, he still knows whether I'm going to pass out and he will be there. And if I'm really out and I can't, he'll start trying to bark to wake me up. And if I don't wake up, then people know there's a problem. The EDS conference a couple of years ago, maybe four or five years ago, I just point I had passed out and he had been alerting me and I wasn't listening, partly because, normally the EDS conferences on the East coast, and this was the first time that it was in Las Vegas, or I think it was in Las Vegas.

So it was out here on the West coast. And so I wanted to go and see all these, you know, amazing doctors that were from world renowned doctors in our ads world, and I was fighting it. And I had mind you, I had also dislocated like my non movable joint right prior to coming because of a hot topic episode, falling off of the toilet seat, putting my arm down to break my fall and popped out this joint.

I know it was literally sticking out and its bone was sticking out when I was at this conference. When the doctor goes, do you realize that's dislocated right. And it was like, that's an immovable joint. That's dislocated. That typically only happens in, you know, with EDS patients.

But he was alerting me. I wasn't listening. And at the time I, then all of a sudden I felt my body crashing. So I told everybody I was laying down, raising my legs and trying to go to sleep for a little bit. And he didn't want me on the ground. And he kept on trying to pull me up, putting his mouth, not biting me or anything, but putting his mouth on my arm.

You're trying to get me to get up. And I was like, no, I'm fine. I'm fine. At the time, I did not know with myasthenia gravis, you don't lay flat. And I apparently. And ended up needing to be intubated. So when I couldn't, he couldn't wake me up, he was barking really loudly, which got everyone's attention. And, long story short, they ended up having to intubate me and which that story is a whole other long story about, you know, there was a big argument between the doctors and the paramedics who didn't want to listen on the positioning of me for intubation.

And they were like, you're not licensed to practice in the state. We don't need to listen to you. So they were arguing. Actually I learned about this afterwards because I was unconscious. Right. So the next day, apparently everybody knew the story. They had separated my dog from me also. So he was barking and whining.

And then the most pitiful sound they said they had ever heard an animal make I can imagine cause he is very protective of me so I can imagine how upset he must've been being pulled away from me. And apparently after it was intubated, he'd jumped over some of the paramedics, licked the firefighter intubated me and then laid over me.

Like, no one's touching my girl condom with me. And so, you know, he did say he just saved my life because. Honestly, had he not been there? Nobody would have noticed because at an Ehlers-Danlos conference, there are many people with dysautonomia and it's not uncommon to lay down and go to sleep. So they would have thought I was asleep and they would have had no way of knowing that I was stopped breathing.

They would have just assumed I had been asleep. So they would have not known, I mean, anywhere else, passing out and stuff like that, or laying down and going to sleep, people would probably question, but at a conference with a bunch of people with these disorders, it probably would have gone unnoticed, especially since I told people I'm just laying down and going to sleep.

Don't worry. I'm okay. And I did the same thing at the FDA hearing our DLA conference last year. So I am very memorable, not just because of my dog, but my dog and learning everybody. I was on a call with the California Rivera action network and. If somebody didn't know who I was.

And I said something about my service, I'd be like, Oh wait, you were the one who passed out of the, at the FDA hearing by ambulance. And I'm like, yeah, that was me.

Yep.

So yeah, we have been at conferences and our, no, now our teamwork, as well as passing out and alerting it is, it's just, you know, you got to go with it.

Right. I mean, I remember the first time he had alerted me and I told the trainers like, well, great for Peta, not good for you because that means you didn't listen to him when he was alerting you. And I'm like, yeah, yeah. Okay.

Right.

Damaged Parents: [00:27:17] Okay. So it sounds like you're at a point where you've totally accepted and, and you can kind of laugh and chuckle about these situations. 

Deborah Vick: [00:27:24] I take ownership of it.

so taking ownership and we're talking about this recently on clubhouse using the word disabled. And it was interesting about people that was, the title was disabled or, use the term disability. And it was interesting because apparently in other countries that is a very negative term.

Right. And it was interesting to see that all of the people that were from the United States rule like we're fine with this term, because we have a disability, right? It's not saying we're bad or horrible, or this , horrible creature that doesn't belong in society. We're saying we have challenges we need, this is a label to tell you that we need assistance.

And like when I write the word disabled, I normally write dis in lowercase and ABLED in uppercase, right. To still emphasize ability. However, I do have these disabilities. It's part of me is part of who I am and I've made peace with that. Right. I can't change what my challenges are. All I can change is how I react to them as part of also my mindset and my mindfulness work.

I can't change the pain that I have. I can't change that I'm in constant pain. All I can change is how I react when I'm in pain. And when I use the term paingry when I'm very paingry you know,

People have really liked this term. So I think is going to catch on. But one of your you're in a lot of pain and you're, and you get angry because you're in pain and it's not necessarily like you're, you're mad because you're in pain, you're in pain and that causes you to be short-tempered right. It causes your patients to be less.

It causes you to be frustrated more. And you know, when you're in pain and in with my dysautonomia and myasthenia gravis, I can't remember where I put anything, no matter how well I tried to organize something. So I can't find it again and get frustrated. And of course, if I'm in a lot of pain, that frustration level is much higher.

So I coined the term paingry to basically alert my children and my husband. Okay. I'm paingry right now. So you all need to give me space, give me some grace. And if I am responding in an inappropriate way, give me a moment. You know, I will recognize it because I am mindful my responses. I will recognize if I'm, you know, any mom who knows have teenagers knows.

There are times when we just yell may not be appropriate, but sometimes it happens. I don't think there was any mom with a teenager, that hasn't yelled at some point right in time. It's just, that's the normal thing of it. That's just Parenthood, right. There are times when it just happens, but when you're paingry that level, sometimes a reaction may be much higher than is necessary or needed.

And so I have to be mindful that response, especially when I'm paingry so that I'm not acting in a inappropriate way, which I have at point done. And then I have to step back and apologize to my children and explain, okay, you know, I'm sorry about this. And I'm doing the best that I can to work with us.

And then, you know, we'd go that way.

Damaged Parents: [00:30:05] Now, do you ever warn them? Like if you recognize it coming on and say, Hey,

Deborah Vick: [00:30:10] I'll just say moms paingey today, and you just need to give me space, you know, and, my kids and my youngest son, especially will come in and start hugging me instead, or when I'm really paingry since I do have done guided imagery with him, he'll try to do guided imagery with me, you know, and it will start to sit mom, it's a warm sunny day.

You're at the beach, you know, and he'll be really sweet about it. And so, he will try to do that with me or I have, I don't have it right. I had it on the window. I have this cool little vibrating metal drum thingy.  And he'll actually sometimes take the jump sticks and start making that relaxing sounds. I go with it to just help me, you know, do that. Or my older son will bring it to me. And since I do crafting as part of my mindfulness practice, my oldest son who used to laugh at me for it now, it's like, okay, I'll just take, give you a space that you can create to get your mind back on where it needs to be kind of the thing.

So it is that term paingry as much as we laugh about it, it also becomes a very good way to explain. To my family when I'm not doing well. And my husband joke saying, I need to make like a shirt or a necklace that says paingry, just hang it up so that we can just have it alert on the door paingry mode, paingry room, do not enter, you know, whatever, but this is the sound

 kind of reminds me of Tibetan button bells,

but it's the vibrating you're breeding sounding. They use it with my meditation and stuff. So sometimes I know my, because it was like, okay, do you need to drum? Do you need your music? Do you need your headphones? And they know that I've done for many, many years meditations and guided imagery.

And if I'm not doing really well on my, my kid used to, when I was able to get a bed this past year, I haven't been able to see because which is a whole other story of my neck problems, but hadn't been able to get up or whatever. And when I was out and not doing well, they'll be like, you need to go lay down and here's your headphones, here's your iPad?

Do your meditation. Here's the dog. You know, cause I also meditate with my service dog. And so, we learned in training, I returned to the operation freedom paws, and we learned at the end of each training session to meditate with our service animals and moving your hands left and right. So they're not moving the same direction you're using left and right brain at the same time to move your hands in opposite directions and then doing a medicine implementation.

Simple breathing. Right. And I can't hold my breath, the traditional count to the four hold for four release. I can't even count them for one, some kind of like breathe in, relaxation breathe out tension. If I can even say all that whole word, I just, it was kind of been, I focused on reading in and out and almost trying to match the breath with the animal, my service animal.

And we almost were in sync with that breathing when I'm focusing on the meditation.

Damaged Parents: [00:32:43] Oh, that's amazing.

Deborah Vick: [00:32:45] And it helps me, especially my pain level is really severe because crying is like the worst thing to do if you have migraines because it causes you get tension, right. And if you cry your face, senses up your neck, tenses up your body tenses up, which only triggers the migraines or the chronic, headaches from all the neck pain will only be triggered if you cry.

So, crying is not really conducive, nobody's vomiting, but either one of those are conducive for the severe pain. Cause it'll just trigger the migraines. So I really was focused a lot on a mindfulness practice instead to work with that.

Damaged Parents: [00:33:21] I think what I'm also sensing is a strong awareness and non-judgment over being paingry because I, think maybe what. Would happen if you didn't own it and accept it for what it was, maybe it would just get worse. What was your experience?

Deborah Vick: [00:33:38] it would like, if so back when I used to see my pain as my enemy, right. It was my arch enemy. And that doesn't help. Right. Because it's part of me and it's not going to change. I will have pain for the rest of my life. It's just, there's no, unless some miraculous discovery occurs.

I'm going to be in pain for the rest of my life. And I do everything I can do to manage my pain. I'm on some of the high with my interest Eagle pump, I'm on some of the highest pain medications we have in Western medicine, yet I also pre COVID have been doing acupuncture for 16 years. I mean, I do pressure points.

I do acupuncture. I do Gua Sha. I do cupping. And I actually have my own cupping thing at home as well. So I mean, I do everything I can with Eastern and Western medicine in that combination. Because by the time I was 28, I reached what Western medicine could offer me. And I was, I had a great doctor who said, okay, there's nothing more than Western medicine can do you need to just start working at trying to bring in some Eastern medicine to try to balance out things a little bit better?

Damaged Parents: [00:34:33] Now, did you ever hope that you would quote unquote be fixed or does that question even make sense? I'm not sure. It

Deborah Vick: [00:34:40] It makes sense. And there was a point in time that I hope that there would be a cure where there'd be an answer or that, you know, we searched for awhile. I mean, while I was trying to get diagnosed and trying to figure out what the heck was wrong with me, because, you know, when I grew up very active, I mean, I was some were going to the fifth grade.

I hiked the Grand Canyon with my dad. And so I've hiked the Grand Canyon and Bryce Canyon and Zion Canyon. And I was very physically active. And then in seventh grade I was doing the triple jump and it was like about a month or so after my bat mitzvah only remember because I carry the term, my bat mitzvah and I was wearing these little heels.

So I had to like work really hard not to drop this tour. And it was a very, very big deal. And , and so I know that's one reason why I know when it happened and I was 13 and Atlanta and the triple jump during the pit and you land in the pit doing the triple jump forward. And I dislocated both my knees at the same time.

And from that day forward, I was on crutches and my life had changed. I didn't know it then. I mean, and we knew I needed surgery, but my dad being a coach and understanding the biology of the body of my mom, being a nurse,  knew having surgery at age 13, wasn't the best option because I needed to grow a little bit more.

Right. So we waited. So my freshman year in high school had surgery was easier in high school and nothing got better. I mean, I had full range of motion after full reconstructive surgery. So doctor should have known something was wrong, but they didn't, or they didn't recognize it, or they didn't listen to me when I was in severe pain because I didn't show it.

Right. I laugh about it. I laugh when I'm in pain still. I joke when I'm in pain still, so they could not correlate being in pain and my mental state. But my dad was a teacher and a coach and taught me to tough it out the whole time. Right. And so my mom gave me all this compassion as a nurse. Right. And my dad gave me all this hard as nails, tough it out attitude.

So I was definitely more of a tomboy than I was of on the girly side. And I'm a man. I grew up using tools like grew up building things, you know, and even in high school, I was the only girl on the team on the group that would build the sets. Right. And there were the power tools and building the sets and so forth.

And so coming of age on crutches was really challenging. And at that point I wasn't labeled disabled. Like my parents never used that term for me. I never heard that term applied to me. For me coming of age on crutches was very challenging because I kept on thinking. And at that point we would get better that the next surgery would make me better, that there would be an answer to what was wrong with me. Didn't happen at that point. I began to realize it's not going to happen.

Right. It's just, I got to deal with whatever I've got and live the best life that I can with whatever I can do.

Damaged Parents: [00:37:08] Okay. I have a question about that. A word you used wrong with you because I think maybe sometimes there's an implicit bias around the, verbiage we use and,

Deborah Vick: [00:37:19] I don't like to what's wrong with me, but that was my mental state at the

Damaged Parents: [00:37:22] Right. Yeah. I picked up on it as a mental state at that time. And did that change?

Deborah Vick: [00:37:28] Absolutely. It did. I mean, I don't see things as wrong with me now, as it's just. This was the hand that I was dealt with and I believe things happen for a purpose. I was planning for career politics at this point in time in my life. I should have been in DC as a congressional representative. I mean, so with my dream went for president of United States.

Never thought that would actually , get anywhere except just have being Jewish, disabled woman. I didn't think I'd never actually win the presidency, but to just get there and show a representation of somebody different. Running for this office and trying to just kind of break the mold of what, who should be in positions.

Like when I was in high school, running for class, vice-president when I wasn't part of the popular group, right. When nobody ran against the popular kids, but I did it anyway to break this mold. You don't have to be the popular kid to run and I didn't win. I lost by one votes. And I remember it was one vote because I know some of my teachers kept done recounted a couple of times to see if they were counting rights.

And even though I was at worst, actually voted as class politician. I didn't get that role. But the following year, another person ran against the, you know, it was a traditional popular kids. She did win. Right. And she actually thanked me when I met her the following year for breaking this mold and letting her know that it was okay to run against people in the popular groups.

Even if you weren't part of that, to break into this whole viewpoint or there's this little bubble of what people are already doing and making it okay to not be that group, but to still do something. So that was my goal. But back then I thought something was wrong with me. I was treated differently.

I was bullied because of being on crutches. I was bullied because nobody understood why I had knee surgeries. And when it wasn't back on the field again, I mean, everybody else that I knew ACL surgery is boom, right? You got an ACL surgery, a couple months of rehab and you're back on the field. Right. And so I  had crutches kicked out from underneath me.

I had, people with also, well, endowed, I had people grabbing my chest at the time. I had people removing screws from my, at the time when they were, I had wooden crutches. Excuse me so that I would fall

and all sorts of things that were not okay to the, those were officially done, right? Like intentionally done.

But then there was a good deal of unintentional isolation and it was people not knowing how to react. So they just ignored you or didn't socially accept you. Despite, you know, we're running many of the student body clubs, I wasn't socially accepted. And so all of that social acceptance really added to that feeling of I'm not okay, I'm not normal, something's wrong with me type of attitude.

And so that was a process that I had to work through, picks up myself. Right. And my parents taught me very much that it's okay. If you can't do this, you could do something else. Right. Or we can adapt it a forgot another way to make it work for you. And I'm just, it really had, it became a process of learning to accept what I couldn't do and focusing on what I could do.

And I probably didn't really, I didn't get there right away. I'll be perfectly honest. I mean, like, even my freshman year, I had my obtained, my electric scooter or power scooter days before college started. And I refuse to drive it from my minivan, my dad's minivan to my dorm room. As sweet as he was. He did drive it from , his van into my dorm room. But he's looking at me like you do realize you need to use this tomorrow to get to class. Right. I mean, there's no way that you can walk across this campus on crutches. And I'm like, I know, I know. I know, but no, I'm not using it right now.

Damaged Parents: [00:40:49] But there's this real struggle to be perceived as, what's considered normal. So how does one overcome that? 

Deborah Vick: [00:40:58] Realizing I, my value is who I am. Right. So part of it is realizing that I have value with my disability and that value is teaching people. I'm not just about disabilities for the able-bodied community or the normal community, quote unquote, I'm doing air quotes for reasons as audio, right. I'm doing air quotes for the normal in and out what's normal cause nobody's normal, but what we considered normal.

Right. And it was really hard to get to that mental state that I'm okay. The way that I am. Because there was so much body image, especially for women of what is considered beautiful. Right. And when you're disabled, many times you gain weight . So then you have the weight issue on top of the disability issue, and then you don't feel beautiful because that's not what society is portraying as beautiful.

So there's a whole host of emotions that go with it because you're not. You don't see that often disabled people in, in these movies or TV shows or models. And then when they are there, there are these gorgeous, really skinny Women that didn't know were probably models before they became disabled.

Right? So, it becomes a very big challenge to realize I am okay with the way that I am and to accept myself for whom I am and for what I am and learning that I am, where I'm at for a reason. And I really do believe that things happened for a reason. Things happen to people that are strong enough to be able to turn it into something useful.

And for me, that is so much. By being able to help other people. I helped myself and acceptance of who I am, because I know now I can help other people by talking about my experiences, by talking about my challenges, how I ever come them, how I adapt them, even as my hands started getting bad. And my latest neck problems that we were talking about earlier in my upcoming surgery, I've lost the use of three of my fingers, because of nerve compression.

And I don't know if that's going to come back, but as a jewelry maker, I had to figure out a way how to adapt, to still be able to create what I created different tools and different devices, to be able to still make my jewelry, despite my fingers. It's not really functioning very well anymore. And so it was just always been this continual process of acceptance.

And I think for me, that light switch really turned on when I started at the university of Arizona. I mean at first I was really angry that I had to leave New York because of my disabilities. But then I ended up meeting a lot of people that were disabled athletes, and for me seeing the disabled athletes and working and striving to be part of the disabled sports teams, maybe yours technically.

And I won't like, because lifting weights with Ehlers-Danlos is not really what you're supposed to do. I wasn't diagnosed at the time. So I didn't know. So, uh, I had a doctor telling me at Stanford that I'm one of the most hyper mobile and people he's ever seen with EDS. And I'm like, yeah, that's not exactly the gold medal I was looking for.

But you know, it's, it is what it is at all. I mean, I can't change it, but yeah, that wasn't my goal. But and happened because I was working out with weights and you stretch before you build and being strong. I worked out with not just lightweights, right? I worked out with heavy weights and so that I don't just do anything a little bit.

I got to go away. And that really damaged me for years. I couldn't sign a paper, couldn't use my hands anymore. I went from being a note taker to needing note takers and learning to be dependent on other people was incredible struggle for me being a stubborn type A person who wants to do everything myself, that is my struggle and learning to accept, help has been a very long journey.

You know, learning to accept, help from others and learning to let other people push me. When I can't get up, a hill is always been, it's been a struggle and a process. And then it's a work in process. That is okay to get help. It doesn't make me lesser than it doesn't make me lesser than a person doesn't make me unsuccessful.

It doesn't make me devalued by needing help. And I even remember in DC last year, it seems like forever ago, but in DC last year, premier disease week, not only did I pass out the first day and I ended up in the hospital overnight, my roommate, and I took hours to find a quote unquote accessible spot to get to march through the park, to go to the Capitol Hill, to lobby with our legislators.

And we parked in a place that was not really the appropriate place I had to go backwards downstairs. And then we were pushing up against these hill up those till against the wind. And she ended up falling right in front of the Senate building. She had to go to the ambulance. So our house was just pretty much doomed our group that we had our Airbnb with.

We just had like a bunch of challenges. And then I they're like, Oh, well  the congressional meeting rooms for the representatives up that hill and I've got little hill is what they said to me. And I'm looking at that and they'll go in at night and it ain't small hill. That's a big hill. I mean, maybe for somebody walking that may not be a big hill, but somebody in a chair who has limited ability and pushy, that's a big hill and the wind added even more resistance.

So, I mean, I was like, literally I was a snail going up this hill. Fortunately it happened, somebody has came up behind me and would ask me if I'd like to help. And I'm like yeah, yeah,

Damaged Parents: [00:45:48] So you would celebrate almost like giving the gift of receiving.

Deborah Vick: [00:45:53] Yes. Learning how to receive has been a process that I looked back. Oh yeah. I'll take that home, you know, and thank you so much for offering. I'm not sure. I would have asked a stranger for help, even though I seriously needed it. Cause it's still hard to ask for help. It's still hard to admit when I can't do something I'm getting there.

Right. I mean, and I am there and now I realize that know doors were pain in my butt. So I will ask people to open doors, you know, and reality is it's common courtesy to hold the door for the person behind you. I'll even try to hold the door for somebody who's coming through the door behind me versus people who are closing in on me, which I just look at them like, are you serious for closing the door on me in a wheelchair?

I'm like, what were you thinking? But it happens. There's some people just don't see you as human. Like they just overlook you all together of your existence. It's just non-existent right. And so that's probably the biggest challenge for me is the people who ignore my presence. Right. Versus. I would rather you be a jerk to me because you don't know how to deal with me, then ignore my actual presence and pretend I'm not even there,

Damaged Parents: [00:46:53] Yeah. It's almost like them asking questions is better than just looking with a weird look on their face.

Deborah Vick: [00:46:59] Right? I have absolutely no problem with people asking me questions. Do you want to ask me questions? Go right ahead. I am good with that. I am good with sharing my experiences. I mean, kids, kids will ask me all the time thats my little man as saying yes, I want to share my experience  if someone asked you you're there for eight hours and telling your story,

Damaged Parents: [00:47:17] Okay. My kids would say the same thing.

Deborah Vick: [00:47:20] this is being recorded for podcasts, honey. So I love your comments, but this is, we need you to be. Hold it to the end, please. But he's right. I do talk for awhile about it, but when kids asked him what's the last  goes through, Oh my goodness. She's like, you're saying it's a three person podcast. So when my kids will ask me, what's wrong with you?

Right. And they, cause he mind you. I have a neck brace. I have his full plastic back brace, full of leg braces for my toes to my, to my hips. So I'll just say, Hey, my first response is, I'm a decommission cyborg, this my first response to people.

 I'm old hardware in me. Right. And it's funny when I get an x-ray the light. Wow. You've got a whole lot of hardware on you and I'm like, yes, I'm just decommission cyborg. And then I explained that all my braces are my exoskeleton. And then, you know, they were kind of like what? And so I explain, that it's what holds me together and that's what I need to keep me going and moving.

And my joints don't hold me together until the little kids I explained, you know, connective tissue, I like rubber bands for the stretch. And they go back on a normal quote, unquote normal person with Ehlers-Danlos. So they stretch and they don't go back. Right. And so it's hard to explain that with the myasthenia gravis, it's even harder because that's the auto-immune that attacks my body attacks receptors from my brain to the muscles and it causes great muscular weakness.

People look at me and they think I'm strong. I have muscles for back in the day that I used to be able to lift weights and push myself, excuse me, and everything else. So they think I'm strong. Even though, obviously I'm not. Well, it's not that I'm not strong as some of the messages from the brain to the muscles aren't getting there, but it also affects sometimes my ability to speak.

I'll start slurring, I'll lose focus, or I won't be able to get my words out. And there'll be many times in my mind. I know what I want to say, but I can't connect that to my mouth and the verbiage to come out. So I'll have a hard time getting words and I'll start being like, I think that the thing, I think that thing, and my kids will have to guess what I'm saying.

And then I'm like, okay. And I have to teach them not to guess. I want to say until I asked them to, because it'll get me off, focus on like, what I'm trying to say. If they start trying to guess for me, then I'll go, oh yeah, no, go right ahead guess and so that was probably the hardest thing as a public speaker, as one who used to be able to speak in front of thousands of people at conferences and stuff to then go to the point of speaking and not being able to save the words that I want to say.

That's like the hardest thing even to have to write everything out and edited me, which I never used to do.

 For me to learn to deal with not being able to speak the way that I used to speak was so hard because I mean, I used to go up there and I have a bachelor's in political science, but it's like, say it's like a, B it's a BS degree, right?

Because you learn, it's a bachelor of science, but it's also a BS degree because you learned how to come up there and  if you're reading off of paper, two things, one, you're not looking up and connecting with other audience. And two, if you get lost, it's really hard to figure out where you were because you're reading off of a speech.

So I never read off of speeches. I used to just have flash cards for my topics. And go with that. But now with my verbiage, not being the way that it used to be, or being able to lose that focus, it's so much harder cause I have to have all that separate and out now to be able to follow along with what I want to say.

So it becomes a challenge in that aspect, right? Because losing your train of thought and it's not dementia, but it is definitely more than what people like. Oh yeah. I forgot things. I'm getting older. I forget things all the time. And I'm like, it's not the same thing

Damaged Parents: [00:50:42] It also sounds to me I mean, because you had capacity for so long, right? and then, and then you didn't that maybe you're in a prime position to be able to help bridge the gap between in society and how do you, how do you do that? Yeah.

Deborah Vick: [00:51:00] Thank you so much for asking that question. I'm like, thank you for asking. It would be like my normal response to people. Honestly, I do it in multiple ways. So I do a lot of awareness programs and that's actually part of the company that I'm trying to form a nonprofit, a company that I just filed the paperwork for the last week.

The initial paperwork for the. For the forming of a corporation for public benefit in California. And one of it is by doing awareness programs, not just for people with disabilities, not just for kids to work with people, especially with people that invisible disabilities, but also we will want to go into corporations and teach them how to develop inclusive programs for people with varying disabilities, how to interview somebody, how to understand somebody's abilities, because there's so many prejudgments that are made based on people's abilities or appearance, and how to get past that, to see what somebody actually has to offer.

So I bridge that gap with public awareness activities with speaking, and, ultimately I want to do podcasts as well, ultimately sharing these experiences because the more we are public about who we are and what we can do, even with our disabilities, the more people can understand, because it's really easy to judge based on someone's appearance and say, Oh, well, you know what?

They pass out or they have, these other disorders are not going to be able to function or get back to our society or our community. And so teaching people that we have something to offer, we may speak slower. We may have a hard time getting a verbiage out, you know, especially somebody who has cerebral palsy, right.

It's much more challenging to speak then, but that we still have something of value to offer. And I teach people that are disabled. And so to learn, to accept what I am and who I am. And then still teach others about what I can do, I think is so valuable because I will tell you, I, even in college, I worked at a disability center in the computer lab. And so I worked with people from visually impaired, cognitively impaired, physically impaired to people that were deaf.

And I even helped people that were deaf change her papers from written, written an ASL into English, because at one point when I didn't know ESL fluently enough to help that, but to truly understand is cognitive limitation didn't really occur until I have the cognitive limitations with these other disorders.

And I have so much more of an understanding of these things and the ability to speak. And I have no problems speaking of my experiences, right. And

Damaged Parents: [00:53:15] Well, and it also sounds like what I'm hearing you say without you, like saying it straight out is that. No matter what your challenge, what any of these people's challenge was, whether they could physically move, right? Whether they had an intellectual disability, whether they slurred their speech, whether they're in a wheelchair, whether they're using crutches, it doesn't matter.

And I know I didn't name all of them. Right. Blind, deaf. I mean, there's so many more that they are all deserving of the full extent of the human experience, whatever that means for them.

Deborah Vick: [00:53:50] Absolutely. And that's what I try to teach people. Right. Is that whatever you can do it's okay. Whatever you can do. It's okay. You have that every single person in this world has value. We all have something to share and we all deserve the ability to do so in whatever capacity that is.

It's very hard to get that accomplished. When everybody only has full-time jobs available. Right? I mean, that's actually been an argument that I've had, this past year, I did a panel to try to bridge a gap between patients and the medical community. And comment that I made is that all of these pharmaceutical companies that have advocates positions, they're all full-time positions.

I mean, I even commented to one of the organizations that I volunteer with them. I'm like, well, you're only offering full-time jobs, which is negating the already eliminating people with chronic conditions because none of us can work full time. You know what I want to say, none of us, but many of us can't work full-time I don't want to give a blanket statement because some people can, but most of us can't and a part-time position.

Like I keep on an email and I'm, Hey, do you have a part-time position? Do you have an internship? Do you have something that would allow people like me who can only give maybe five, 10, 20 hours? To this position so that we can still be part of this experience and share our work without, you know, killing ourselves and destroying whatever we have left.

And there's not normally those positions

Damaged Parents: [00:55:16] Because there's a right. And there's a real desire to give back to the community what's been given to them and to feel, I think part of society

that,

that we're part of, we're not,

Deborah Vick: [00:55:28] not, we don't. So our disorders isolated us on a regular basis, separate us from everybody else because people don't understand that chronic pain or their chronic fatigue or the chronic illnesses. Right. And then so often we can't socialize the way we want to because we're in too much pain or we can't move or what have you.

So our disorders isolate us enough as it is. So somehow bridging gaps that we can still participate in that element.

Value is really teaching us as a society or groups that we have value. And it may not mean we can show that and giving back in terms of a position at a job, but maybe, ideally that it would be to not only give back, but maybe to have meetings with doctors and facilities right.

Once a month or once quarterly, where we can just come in and share our experiences about who we are and what we're doing, and to create that platform for that, to create the platform or ability to give back in whatever way we can with my crafting company. I have this, my dream passion project right now.

Sorry my voice coach would say a passion project right now, in which we're, I've called circle of kindness. And we're creating crafting kits for people that are disabled to create something, to teach them about mindfulness and gratitude and receiving, and then asking them to create cards for people that are in the hospital or people that are battling mental health conditions, just so that they feel that they validated that somebody took the time to create something for them.

Damaged Parents: [00:56:56] What I really love about that idea is it's, giving people with disability already, something to do in a way to give back and reaching out to those who it may be new, or maybe not, but to show love. And I think that's a huge bridge for me. I think personally

Deborah Vick: [00:57:13] Exactly. And that's why I loved it. You know, especially if there were kids in the hospital or parents in the hospital, just something to give that cycle back. And also many people that are stabled are on social security disability, and they can't afford these kind of, extraneous supplies. So now we're giving them something that can be done for me, crafting, and creating is my escape.

It's my mental mindfulness project practice. And it's a few minutes. Or if you're really, I have cards that I make that I take me hours to do, but I get really in depth, really involved with it. And for a short period of time, I'm forgetting everything else around me. I've done a Facebook live when I'm making one of my cards.

I didn't realize like an hour and a half has passed already and, you know, while doing it. And I'm like, wow. You know, so I can't escape pain, but. I can refocus on something else. Sometimes not always just depends on where I'm at on the scale, if I'm going to seven or so, I can probably refocus on something else and that element of crafting and creating and being mindful of what I'm doing completely zoned in and mindful of what the action that I'm doing.

And also on who's receiving it, that it becomes a positive element for me for that creative zone. And also learning how to let things go and be in the, go with the flow and just let it be what it's going to be, which is a whole other thing to talk about. It took me a while to get there because I am a little studying my crafting.

So it took me a while to get to that element. But it's also really like what society is for us, right? Where you can't do everything you want to do. So we have to make the best of whatever we can do. And share our experiences is the only way people are going to truly understand what life was like for us.

I know you can't truly in 100% understand without being in my stews or without seeing me on a daily basis, because people will normally see me at my best, not, all my other in-between stages. So, you know, learning how to see where I'm at is a challenge as well as always being vulnerable enough to show yourself when you're not functioning is another whole issue.

Damaged Parents: [00:59:10] Isn't that the truth?

Deborah Vick: [00:59:12] I did any know, is it a video where it, I took probably the most courageous thing for me to do. I had no makeup on, I was at my worst pain levels and I had a friend interview me for a video and I didn't want people comparing themselves to my videos when I'm all made up and all done up.

And I'm at my best, which is like 10% of the time. So I don't want people to compare themselves to me when I'm functioning. First of all, I don't want people comparing themselves to what I can do. Right. Cause I'm a little bit of the same. And as just me, you know, and I think everybody has to really internalize it and truly look inside to see what their abilities are, to make their own decisions on what their goal setting should be defining success for themselves.

Not based on somebody else's success level. So that's one thing, but then she was just so that experience of me, not in my best. And it's interesting because a video that I, I was feeling pretty good and I did it with the mindfulness and the crafting and stuff. It had like 300 something reviews, views. And you know, the one that I did when I was in so much pain, It had like 20 views, and you know, you have to look at it and go, okay, that's just the way it is and not feel self-conscious about it and not feel that it's a judgment that nobody cared to watch me when I was in severe pain and this discussion of what it took to get to that video that day, nobody cared, but it's not that nobody cared.

It's just that that's not what people normally see. So that didn't really grab people's attention. The only people that really watched it were people who could really, really relate to that. So the message was out there for the most people, really. Unfortunately I hope other people would see it too. But they didn't really care to watch it.

And then that's okay.

Damaged Parents: [01:00:48] Yeah. Well, it is. It's hard. It's hard to watch. I know, even when I'm in pain or struggling, it's hard for the people around me to not want to fix it.

Deborah Vick: [01:00:56] Right. That is very true. I think it's much harder to be a caregiver or somebody with a chronic illness and chronic pain than it is to live with it as hard. And it's not saying that it's not hard to live with because it is hard to live within those challenges and limitations and accepting what you can't do.

And focusing on what you can do is a challenge. That being said, those that are around you, they want to fix you. They want to make you better. They want to help you. And if they can't so many people have a hard time with that. Many, many people don't end up, they lose their relationships with their spouses.

They lose their significant others that are friends and so forth because they don't, they can't fix you and they don't know what to do. So they end up leaving. Right. And I still remember when I got diagnosed by the doctor, John, John McKusick, who was considered the medic for grandfather medical genetics, and my dad.

This big, brilliant, you know, new Yorker, dad arguing with the doctor going, no, you're going to fix my daughter. You can fix, are you there? There has to be an answer to this. And you know, and he doesn't want to accept. No, and he's arguing as well, doctor. Oh my God.  and then

Damaged Parents: [01:01:59] It's part of the society, that belief of society, too, that it can be fixed. Whatever's broken, can be fixed and coming to understand and acknowledge that that's not true. It's definitely not 100% true. And it coming to accept that is, is part of the journey. And it's. It's also a really, really, really hard part of the journey.

Deborah Vick: [01:02:22] It really is.

People come up and say, I'm going to pray that you're healed. And I'm like, you know what? Don't need to pray over them and I'm healed, pray that I can help that I can manage the pain better. Right. Or pray that my pain is less or pray that, you know, I get to communicate what's happening because I mean, I'm not going to be cured and that's okay.

I would, of course, like less pain. That would be great, but I can have less pain. Good. I'll take that. If I can have less fatigue, I would.  Am I going to be cured and it's not going to happen, but if you want to pray that I had the strength to manage my challenges. Perfect. I mean, because that's what we need is that strength and that support to manage the challenges that we have.

And also, if we want to put it, that I don't get any more diseases? This I'm okay with that too.

I'm okay with not adding anything else. Unfortunately, reality is I know something else is going to go wrong with me. And at some point in time, it's just, it's just going to happen. I, and I know that, I mean, even my, one of my medications that I use as a type of chemotherapy called rheumatrexan  from myasthenia gravis.

And when you get it, you have to sign the, you know, all the possible risks, which includes causing a rare disease, rare cancers, like literally a medication that I need for a rare disease tells me, and it an increased risk for rare cancers because of this. And I'm like, this isn't the same, , I didn't have to roll my eyes every time I have to sign that paper,

like, Oh my God.

Damaged Parents: [01:03:40] right. No. Well, I have really enjoyed talking to you. I wish we had more time. I mean, our conversation is just, it seems like it's really informative and educational and there of course were other topics that we had briefly talked about that we didn't get to get to. So maybe we'll get to do another

Deborah Vick: [01:03:59] Yeah, I'd love to, especially the mindfulness work and how do we get to that mental state of practicing mindfulness within our own abilities and not the abilities of what society tells us.

Damaged Parents: [01:04:10] Yeah. I think that's huge.

Okay, so real quick, I know we're over time, three tips or tools that if someone out there is listening, that's just beginning their journey of their struggle that you want them to know.

Deborah Vick: [01:04:22] Number one thing is it's okay to not be okay. You know, really we're going to have days, maybe months, maybe longer periods of time that were just completely not okay. And that's really okay because it's, so it can not to be okay. We're not, perfect. We're not, you know, a hundred percent of anything.

So that's the number one thing. So the number two thing I would say is to find groups where people have a positive response to the challenges that they're facing. So there are a lot of support groups that people have and sometimes important groups or people just kind of kept complaining about the challenges, but not doing anything moving forward.

Whereas, you know, I surround myself with positive support groups, where there are people that are struggling and we have bad days and we had, and there's no doubt about it. There's depression there related to the pain or the lab. Normal to mourn it, as long as we still find a positive thing at the end of that day, when you're in that talent. So I have, like, I made a deal with myself, right. That I can get upset. I can cry about something. I can be upset about that loss as long as I also ended on a positive note of what I'm going to do to still be positive and give back and turn this into something useful.

Right? And then the other thing too, presides the groups, which by the way, if you get in clubhouse or you get on Facebook, there's a ton of support groups that are very positive and empowering. The other thing would be is to remember that you have value, you are valuable, you are worthy, you are worthy of love.

You are worthy of compassion. You are worthy for who you are as a person. I mean that we all have something to contribute and to try to figure out what it is that you can do. With your disability, whether even if it's from your bedroom. Can you make cards to make somebody else feel better? Can you, sit here and get on chats?

You know, can you be an ally that way? So that's one of those are the biggest things for me. And then as we talked to I've joined with all stripes is one of the organizations that I'm volunteering with. It's finding groups that you can volunteer with you bridge that gap between what society thinks you should be doing, or what doctors or researchers, or whatever it groups may be and what your disabilities are to help bridge that gap.

Because that's never our interaction with doctors in the medical community as a whole, isn't going to change until we start representing ourselves to, we start showing up and being present in whatever state that may be. You know, I mean, yesterday I was so happy to have my first club palace room, and yet it was also not a great moment for me.

And I showed up anyway and I said, I'm here. I'm not at my best, but I'm, here to do the best that I can do at this moment. At this stage. I can tell you right now, I am far from my normal hunt. My version of my norm, a hundred percent, right? I'm not there. I maybe at 60%, but I'm here and I'm being present at the moment to the best of my ability and to really accept that our abilities are fluctuating and that's okay.

You can share, I'm not a hundred percent, but I'm here to do what I can do. And I think that's the other aspect of sharing that with people.

Damaged Parents: [01:07:31] Thank you so much Deborah for being on the show today, I've really, really appreciated it.

Deborah Vick: [01:07:37] Thank you, I'm honored to be here and  we all have something good and this being our best version of us is all we can never ask for, right. And that support to be our best version of ourselves, whatever combinations that may be is also going to make the world a better place because we have something this cross lines, right?

It's whether it's disability, whether it's an equity issue, whether it's diversity, you know, racial or ethnic diversity, whatever it may be, we all are valuable. We all have an experience to share, and we all need that support to be our best version of ourselves.

Damaged Parents: [01:08:07] Oh, that's a perfect note to end on. Thank you so much, Deborah

Thank you for listening to this week's episode of Relatively Damaged by Damaged Parents. We've really enjoyed talking to Deborah about how she continues to find good in the world and is a shining light even when things are difficult. We especially liked when she spoke with an abundance of love for her children.

To unite with other damaged people, connect with us on TikTok look for damaged parents. We'll be here next week still relatively damaged see ya then!