Vocal cord dysfunction

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    Aunia Kahn

    My Journey to Become a Proud Disabled Business Owner

    I am a proud disabled business owner. However, I have not always been. Being a bubble girl is not a badge of honor I wanted to wear. To be frank, I found my disability shameful and embarrassing and wanted to hide it. I desired to be seen as a whole person and not “broken.” Learning young that success was only attainable if you hid vulnerabilities and put on a good game face was a lie. Yet, it felt the most comfortable place to be and I hid it well. As a Young Girl By the age of 5, I was running businesses out of my grandmother’s kitchen. With a mustard-colored rotary phone, stacks of thick books filled with page after page of floral patterned wallpaper, and a pencil in hand, I was making imaginary sales – to imaginary people. As I type that out, it sounds a little wacky. I was a kid. Did no one else have imaginary clients? It was obvious 40 years ago that entrepreneurship effortlessly coursed through my veins, yet, I never knew that it would be the golden key to living a quality and secure life with a disability. Health Crisis By the age of 14, my mild health issues evolved beyond nuisances, and by the age of 19, they grew debilitating. I was brushed off by every doctor who either told me, “There is nothing actually wrong with you” or “it is all in your head.” As I was placed on a feeding tube formula in 2012 for 3.5 years, they pinned me as anorexic and encouraged me to go to a treatment center. Living 20 years with no answers, going in and out of the hospital sometimes numerous times a week, and the constant gaslighting by the medical community was very destabilizing and isolating. The loss of support over time from family and friends who started to believe I was neurotic or a hypochondriac felt crushing. Honestly, I can’t blame them. Yet, I knew instinctively that something was very wrong even if no one believed me. My disease is rare, complex, and hard to pin down. I do believe doctors at times tried to help but often gave up. Others doctors did not even give me a chance and brushed me off almost immediately when they could not figure me out and I was not a simple patient. Real doctors don’t like a good mystery like they do in the show “Grey’s Anatomy.” Aspirations Lost My college aspiration to be a therapist was unattainable because I did not have the stamina or ability to stay in college. I enrolled and re-enrolled over and over again. I finally had to let it go. During this time, with an abundance of time on my hands and an inability to get out into the world, being isolated gave me a new direction. I leaned into technology to research my debilitating symptoms, create connections, build community, and try to gain visibility. The internet and technology saved my life in more than one way. I started to learn website design in 1998, back when Geocities was a thing as well as graphic design and marketing. Connection Through the Digital Space Another thing that helped me through the tough times was being creative. I created fine art through digital means due to my severe allergies to any and all art mediums. I mastered painting with a mouse in Photoshop and later was so delighted by the invention of tablets. Creativity and digital connections were not only therapeutic, but one of the few windows I had into the real world, and helped me stay alive. Not long after I had started to gain ground as an artist as well as a woman in tech, I started to create visibility and income, which gave me the tools to help others do the same. Tech/Digital Skills: A Window Outside and Independence Over the last 24 years, these skills and tools have been invaluable to me and others. I run Rise Visible, a full-service digital marketing agency where I help my clients create authentic connections with their audience, help them gain a voice, and move into a more visible space. Over the last few years of COVID, unlike a larger percent of the population that typically lived more normal and abled-bodied lives, I found the isolation not unfamiliar or hard to deal with. It has always been my normal and nothing changed that much for me. I already worked remotely, I was already limited in where I could go. I often wore a mask (as I have for 15 years). I had already learned to be careful and find ways to live safely. Yet, I found those close to me who lived much more normal lives had taken a big hit. It was jarring, painful, depressing, and isolating no matter what your belief system is or if you’re able-bodied or not. The whole world changed around us. Opportunities in Vulnerability During this time, I found it imperative to be vulnerable and support others who were struggling in this new space. I was able to sustain a number of small businesses by helping them move from in-person to online by building them an e-commerce platform. I helped other people start and set up online courses for teaching what they loved. I also helped small businesses build solid marketing plans so they could let go of the fear of losing their businesses. Being a part of a greater story of overcoming and vulnerability for others around me, as well as a very significant life event changed me (more on that soon). I felt it was important not to hide my disability any longer. Finally, a Diagnosis In late 2018, I was finally given a medication that changed my life and improved my prognosis – still no diagnosis. In June 2021, I was given a life-changing diagnosis after almost 20 years. I was diagnosed with Ehlers-Danlos syndrome (type 3), mast cell disease, dysautonomia, and POTS. I also have PTSD, craniocervical instability, hiatal hernia, dysphagia, vocal cord dysfunction, neurodiversity, esophageal dysmotility, etc. The long and short of this is I am Gumby. I am allergic to almost everything (I can eat only 10 foods in the same order – this has been every day for the last 10 years) and can easily go into anaphylaxis over just about anything my body finds abnormal. Food gets stuck in my throat and sternum, making it hard to breathe or digest food. My autonomic nervous system is on strike and if I stand up or lean over too fast, my heart rate goes up so fast that I can pass out. My head could fall off like the character in Jenny’s children’s fairy tale “The Green Ribbon.” I also have a slight lisp my partner thinks is cute. It’s all a complicated hodgepodge of genetic mysteries and confusing “ah moments.” I can’t say I have ever explained my whole medical record which is about 3 inches thick in just a couple of medically poetic sentences – short and sweet for the win. I Am Disabled. I Can’t Pretend. I have a life-changing diagnosis that I can’t pretend I don’t have. Believe me, I have tried. The moment I pull my elbow out of socket by twisting the wrong way or almost black out leaning over to pick up a dirty sock, reality hits. I have learned to accept what is and speak out, because the world that needs people to be real, authentic, and vulnerable. With my newfound stability moving out of survival mode to thriving mode, it would be a disservice to not share my story or try to amplify the voices of other disabled people in the world and in business. If I hide behind my disability and don’t step into my truth, I am a hypocrite. If I believe in diversity, equity, and inclusion only for others and not myself… how can I be an advocate? It is cliche to say that “we have to put on our mask first if a plane is going down,” but it is true. We can’t empower others if we minimize ourselves. I am on a mission to create a space that empowers disabled business owners. The Ebb and Flow of Chronic Illness Even though right now my disability is stable and I can step up and reach out to help others, it might not always be the case. It is obvious to me and others who live with a chronic illness that our abilities to help and participate in the world are often unpredictable. It is an ebb and flow. We must meet ourselves where we are right now and right now. Personally, I can stand up and be a voice right now. Later I might have to quietly slip into the background for deep self-care and repair without feeling bad, shameful, or less than. I can champion others who are able to hold the light for a while and run with the torch. Business ownership has given me the ability to be flexible with my needs, the ability to help others, and the ability to maintain an income. I identify as a disabled business owner and I stand with others in the best way that I can right now. I stand with others who feel marginalized in society. Visibility for disability is so important. I am proud to be a disabled business owner.

    Community Voices

    Lately the stress in my life has been messing with my language abilities, more than usual. Mostly expressive, but of course, since I have developmental receptive language difficulties as well, that's affected too. It's reminded me (over and over again) that the basic, underlying , fundamental difficulties that have been with me all my life really haven't changed, even though I've got oodles more compensatory skills than I used to. Many of which I've been losing to various degrees, for varying lengths of time.

    I really don't have anyone in my life anymore who understands what it's like to struggle with language, to struggle with communication, to struggle even with the concepts that underlie these things. Much less the physical difficulties that present themselves periodically as well. (Movement disorder type things, which may or may not be partially diagnosed). #Apraxia #ApraxiaOfSpeech #VocalCordDysfunction #FocalDystonia #SensoryProcessingDisorder #SensoryIntegration

    I feel like such an alien sometimes... having difficulty understanding concepts other people (even children) take for granted, yet easily understanding and being able to do things other people find difficult, easily.

    1 person is talking about this
    Community Voices

    I Was Not Always A Proud Disabled Business Owner

    <p>I Was Not Always A Proud Disabled Business Owner</p>
    13 people are talking about this
    Community Voices
    Community Voices
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    Community Voices

    World Voice Day post #WVD

    <p>World Voice Day post <a class="tm-topic-link ugc-topic" title="WVD" href="/topic/wvd/" data-id="607a544206126400fa9b851b" data-name="WVD" aria-label="hashtag WVD">#WVD</a> </p>
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    Community Voices

    Questioning the origin of my vocal spasms

    #VocalCordDysfunction #Dystonia #Autism #Dysphagia #SensoryIntegration #SensoryProcessingDisorder #MotorDisorders #Dyspraxia #Apraxia #ApraxiaOfSpeech #Undiagnosed I posted a question on the vocal cord dysfunction and dystonia communities earlier tonight, and then did a little research on vocal cord dysfunction in order to see if I could find any answers to a question that has been unanswered or partially answered for decades in my life. About the cause of the painful vocal spasms I've had all my life, and the dysphagia issues that developed in early adulthood, that seemed to be related. An exacerbation, if you will. Both have waxed and waned significantly since.

    What I found google suggested two things: 1. Nobody in the medical community really has a clue about vocal spasms, although the field of dystonia has more knowledge than the rest. And 2: Given all my other issues, it is entirely likely these symptoms are not caused by jyst one thing. It could be a number of things! Oh yeah, I forgot to add #Trauma #PTSD #CPTSD and #Asthma to the list of potential factors. Oh, and #childabusesurvivor .

    Stress does seem to have played a factor, as does #Fatigue especially as I consider the baseline level of fatigue and stress I lived with for most if my life that I am only now beginning to realize the effects they must've had on me, and how much it all must've inhibited my abilities and ability to grow as a person, and to learn. (Which were hidden due to my high intelligence and academic ability. #Hyperlexia played a factor in that. And the general intolerance of the people in my environment, and the ableist nature of society in general.) And the cost its all had on/to me.

    But there's a lot of neurological complexities too, as you can see by the hashtags. It makes me leery of trying yo officially get this sorted out after all. Most medical professionals won't know quite what to make of it all, if they even know the terms! Still, I wonder... I've always thought it was one thing, or mostly one thing, but maybe it isn't. Maybe it is more part of the whole "interesting neurological mess" thing so many autistics find themselves dealing with. (Multiple neurological syndromes that are too complicated to try to explain how they all work, never mind interact, to outsiders)

    Community Voices

    What is the difference between vocal cord dysfunction and spasmodic dystonia?

    #VocalCordDysfunction #Dystonia #Undiagnosed
    I've been dealing with vocal cord spasms that affect my breathing for virtually my entire life. It was once upon a time suggested it might be vocal cord dysfunction, but at the time, my speech pathologist had just learned about the existence of the condition, and little was known about it. It was assumed to be an entirely psychological condition. That never made sense to me.

    Later, a friend asked me if I'd ever been evaluated for spasmodic dysphonia, AKA laryngeal dystonia. When I looked that up, having never heard of it, I discovered it sound like me. One of my doctors agreed, but there was no one in my city who specialized in dystonia. My speech pathologist was always too intimidated by its rarity that she refused to diagnose it. My symptoms, while annoying, and difficult sometimes, weren't severe enough to really need treatment, beyond muscle relaxants, even though they sometimes interfered with my ability to speak and later, to swallow. So we decided not to pursue diagnosis. The muscle relaxants reduce the severity of the spasms and the pain, but not the frequency of them.

    We operated on the assumption that it probably was dystopia, and explained it as such when need be. That worked for many years. However, a few years ago I started wondering if we had it right, as I'd had a long period of time without any major flare ups. Not sure how long because it all was so common that unless it really demanded my attention, I didn't pay the whole thing much attention. I continued to have regular minor issues with swallowing, and the occasional spasm that interfered with my ability to speak, briefly. Sometimes they would completely wreck my vocal coordination for a bit.

    While SD can have short periods of remission, it is not supposed to have long ones. Also it doesn't normally affect breathing, although I see they are discovering a variant where it can occasionally. It is also not supposed to be painful, though my issues always have been. My current autism specialist suggested maybe it was a neurodevelopmental thing I'd grown out of. Also a good possibility given many of my other motor issues. But then about ... maybe 2 years ago, the painful spasms came back with a vengeance! The seem to be largely fatigue related, although maybe it gas gotten more complicated since. I can't take the time to lay down every time they flare at this frequency!

    Some of what I've read in this community sounds familiar, but I really don't know anything about vocal cord dysfunction, so I thought I'd ask for advice here. And then go do a Google search.

    Any help would be appreciated.

    Community Voices

    I have no friends to talk to on here who will be my friend and check in?

    #DistractMe #Upallnight #FlareUps #PTSD #VocalCordDysfunction #VocalCordDysfunctionFamilial #PTSD -old #CPTSD #COVID19 #MightyBookClub #MightyTogether #MightyPoets #mightyartists #MightyMusic #MightyQuestions #TheMighty #Disability #Aspergers #HashimotosThyroiditis #HypothyroidismUnderactiveThyroidDisease #mightywarriors #mightymonday #Pledge2EndBullying #TheMighty #CheckInWithMe #ChronicPain #Yoga #Art #ArtTherapy #Spoonie #Bipolar2Disorder #BorderlinePersonalityDisorder a guy was sad bc women on dating apps are mean to him then I’m nice and say don’t harm yourself and in here for you and he’s rude and incredibly hurtful to me ghosts me and blocks me what gives? I’m not bad looking and it’s not even like I’m interested in him in that way is it a control tactic? Whining and threatening to harm himself looking for attention you give him kind s words he blocks and ghosts you?

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