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    What Taking a Hiatus from Advocacy Taught Me About Advocacy

    Part 1 of 2 What does being an advocate mean to you? According to the Merrian-Webster Dictionary, an advocate is “a person who publicly supports or recommends a particular cause or policy.” While I believe that to be true the way I live that definition has changed over the past seven months or so.

    If I’m being honest, dear reader, how I advocated is a big reason for why I took time off from writing, guest lecturing, appearing on podcasts, and participating in research projects. Over the past five years, I was: regularly guest lecturing at different universities across the states, working on various articles, speaking to local networking groups, presenting at national and international conferences, appearing on any podcast that would have me on, and saying yes to every research project opportunity. I said yes because I believed the best way to advocate was to do the big things. Guest lecture to the next generation of speech language pathologists. Write, present, and podcast for all the world to read and hear. Volunteer for any project that helps us better understand stuttering. I did this because I wanted the next generation to know its ok to stutter. Yet, my constant yes came at a cost. After 5 years, I hit burnout and it impacted my mental health.

    Not the burnout that’s featured on Instagram. I’m talking about the burnout that makes you hate and resent the things you once loved. Writing went from something I loved to something I wanted nothing to do with. Open word documents on my laptop gave me even more anxiety than I typically have because I felt the (self-imposed) pressure to create content. I dreaded leading support group meetings. Canceling guest lectures and speaking engagements became very tempting. Emails about research opportunities were instantly deleted. The resentment towards all the things I once loved led to guilt. I felt guilty for not working on a new article. I felt guilty for not participating in a research project. Instead of looking forward

    to speaking engagements, I was looking forward to their ending. Between the constant guilt, heightened anxiety, and burnout, I started to wonder if this was all worth it. And honestly, I was tired of wearing the mask of being a public figure. Ironic huh? For so long I had worn a mask of being ok with the fact that I stutter. And now I was wearing a mask of being ok with talking about my stutter.  Through it all I felt like James the person was being lost to James the advocate. I wanted to go back to summer of 2017 where I was just James before I became James the advocate.  As a result of all this, I decided losing myself to advocacy wasn’t worth it and I was going to take an indefinite hiatus. I had no timeline on if or when I would get back into public advocacy. And if I’m being honest, I was ok with never getting back into it.

    During my hiatus, I spent time on myself. I got back into my first hobby, reading, and rediscovered my joy for it. I somewhat lived out a dream and played in a fan made Survivor game. I went to networking events as me and not as someone looking for their next speaking engagement. I occasionally wrote because I wanted to and not because I felt that I had to. I learned to say no to speaking engagements. I worked on my mental health. I focused on setting boundaries for myself. Through it all, I spent time on reflecting how I can continue to be an advocate without losing myself to it. My new way of being an advocate can best be summarized by the Mother Theresa quote, “Do small things with great love.”

    Allow me to explain. I’m still open to writing, podcasting, and speaking to different universities and organizations. In fact, my hiatus taught me that I actually enjoy those things; however, I didn’t enjoy how often I was doing those things. Now, I’m focusing on being an advocate in small ways. This can be something as simple as wearing a stuttering related t-shirt out in public. Or sharing a stuttering related post on social media. I’ve done these things for years, but always saw them as being an addition to the big stuff instead of being enough. Besides that, I’m focusing more on one-on-one connections within the stuttering community. Whether that is through my support group I’m in or mentoring other PWS. Letting them know that their voice is strong, good, beautiful, and worth being heard. Validating them and being a listening ear for them on their rough days. Or just being someone, they can talk to about whatever. I think sometimes doing many little things well is better than doing one big thing well.

    Ultimately, my hiatus taught me that living my life to the fullest is the best way to be an advocate. I don’t need to write so many articles a year, say yes to every speaking engagement, wear only stuttering related clothes, or share every stuttering related post on social media

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    What Taking a Hiatus from Advocacy Taught Me About Advocacy

    Part 2 of 2 . Those are great, but I can still be an advocate without doing any of that. A friend put it best when she said, “Advocacy is not another check on your to do list, you LIVE it.” So that’s what I’m going to do. Live a life that shows it’s ok to stutter. A life where stuttering is just one small part of my story and not my entire story. A life that is good, beautiful, and enough.

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    This Fibromyalgia Thing Sucks

    I went to my fibromyalgia specialist today and was told that my left thigh muscle is deteriorating and if that doesn’t stop I’ll end up in a wheelchair.

    I had a pretty decent fall on Wednesday of this week and after the ambos got me up I couldn’t walk very well at all. After I got home I didn’t walk very far at all.

    I decided to stay home from hospital (let’s face it they only toss you out at 3/4 in the morning and getting home is my problem) plus I wanted to see the specialist at my worst point to give him some idea of wat I’m dealing with.

    Because I’m so stressed I’m going to fall my brain fog stuttering is out of control and people don’t understand me. My pain Is starting to also play up. So between all this Going on I’m lying in bed wishing my beautiful mum was here as dad struggles to understand what I’m going through.

    I feel so alone right now just wishing mum was still here

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    #depressionsucks

    So, had hard day. So much negativity towards me from my mom. I got up and took a walk with my sons girlfriend. I don’t need fucking negativity in my life. I don’t even watch the news because of it. I’m thinking about my childhood I don’t remember ever finding joy or having enthusiasm. I remember stuttering whenever my dad would raise his voice or yell. Later to find out that’s part of #AnxietyAttack . I remember to laying in bed at 5 afraid to go to sleep because I was afraid of dying or afraid my parents were going to die again #Anxiety . My whole life was abuse from 8-12 #SexualAbuse /#Incest . Later on met my X husband #EmotionalAbuse . I’m done venting #MajorDepressiveDisorder #PTSD #GeneralizedAnxietyDisorde

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    Suffering

    I don’t post on here much anymore. So, hi! But I just wanted to see if maybe anyone has a similar experience.

    I’ve been dealing with headaches. Every day. For going on 2 months. I’m trying to get into the Neurologist, but the insurance is taking its time. It kinda started suddenly and harshly.

    I’ve been in my bed for a good about of this time simply because of the imbearable amount of pain. I’ve now been on 5 prescriptions, and 4 shots, but nothing seems to be working. They keep saying it’s migraines. Ringing in my left ear. Running into walls. Almost falling. Cant walk straight. Cant hold conversation a lot of the time.

    Pain is one thing that I understand I might just need to learn to somehowww deal with, but the rest of it? Lol. I have to come home and cry a lot because either I feel frustrated with myself that I can’t speak to my friends without just… stuttering and giving up… or coming home screaming and crying because I am in so much pain I feel if I’m around people I might hurt someone.. so.

    It’s a lot. Plus, because of my headaches I’ve lost my job(s), and fun nights with friends. It’s ruling my life.

    #Headaches #Migraine #help

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    Misunderstood

    Part 3 of 4 okie of the Year in my first Veterinary Distribution position and went on to be a top performer either first or second in the nation every year for 9 years. Finally, an infectious disease physician in Tampa diagnosed me with #LymeDisease and #Babesiosis in 2009. We got to treating as aggressively as possible WHILE I kept working, never imagining I would not get rid of it. I had no safety net, no husband, no opportunity to stop working to treat and not lose everything. I maxed out any contributions to my 401K and saved and saved, put money into retirement knowing Chronic (not regular Lyme) is progressive. Busting my tail with God’s help and blessing through constant pain and sickness, determined not to lose my livelihood, my independence, my future to the disease all the while infusing with antibiotics, having to go to Germany 2 weeks in a hostile, because 15 years ago treating #LymeDisease was illegal, (Lyme treatments were in their infancy in this country) and in the middle of #Stuttering , falling into things, seeing floaters, God gave me the faith to purchase my home, my sanctuary, smartly during the recession, while at a sales meeting in California. All the while I had to pretend I was OK, enduring burning and stabbing in my head that started in 2005, among so many other neurologic issues.

    Having held somewhat of a high profile position because of my dedication and constant activity in the Veterinary Industry, all my body craves and does best with is quiet, peace, no stimulation, and isolation when I need to recover. If I didn’t live through my intense headaches, pains in eyes, face, gums among other symptoms, I wouldn’t live at all but pushing through them every day leaves me exhausted and needing recovery time.

    Finally medical leave after medical leave I voluntarily left my company because I decided my faithful (& BEST) customers deserved a healthy person whose body didn’t keep sending them out of the field on medical leaves. Shockingly, I got denied my disability insurance. After being called a liar by the insurance company and that my Germany treatments where I was ACUTELY ill were falsely described as a vacation, I had to hire a lawyer to win disability for the year. I have files and files of proof and medical records from my serious medical conditions, but add the term #LymeDisease , and it is met with scrutiny because the differentiation between #LymeDisease and Chronic #LymeDisease is not recognized by enough of the world yet. I have dealt with a mountain of #neglect by the medical community and injustice by insurance companies. And all the while having to hide my illness. I would collapse in my car, throw up, be unable to walk out of the blue, stutter, and feel shocks of pain in my head, arm cramps, soreness in ribcage, all while speaking with veterinarians or doing presentations. I had to have surgeries to repair tendons and severely injured my back, neck and knees when I would flare and still do. This started in my TWENTIES, not as I aged. It’s not the same. My heart BREAKS for children afflicted with this nightmare. Against the doctors’ advice and reality, I went back to work and worked four more years in equine health, and equine nutrition. The topmost specialist in Washington DC, Dr. Jemsek, found me to be one of his worst patients and during treatments there I actually had my fourth and final interview for the Equine Nutrition position in the hotel before one of my clinical visits and told my doctor that God wouldn’t bring me this far just to see me fail. My ridiculous optimism served me well until it didn’t. It took me YEARS and YEARS to change my expectations due to the inability to get relief despite all the determination, faith, belief, effort, and WANTING so badly to feel anything resembling “healthy.” I am so glad I did go back to work even though it was not sustainable because I found my true talent, and gift in an area I could use all my veterinary and medical knowledge in as well…Equine Nutrition. During a business lunch with co-workers one day, I told them I push on and make the most of every day because of the hope that I could have a good day. They couldn’t conceive of 90% of days living in a torture chamber. It was so beyond their reality, they thought maybe I was kidding and laughed because I never complained. I don’t blame them. Every time I got established and my executive team and employers told me they didn’t care if I only worked two days a week through my illness, what I produced was great and they would keep me hired, the compan

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    Paranoid and very annoyed

    My trauma is all consuming and confusing I can’t think without overdoing and analyzing every word till Im losing the point of the root of the message and I forget the next steps in the routine trip on my feet stumble stutter and hope you don’t interrupt while I think
    Im not done yet I’m not done yet
    My point is that
    I still haven’t made my point
    I can’t think with all the static in my ears
    And all the stuff in the viewfinder cant fucking focus or zoom in stuck on automatic with no swing in my step or skip in my spring
    Bouncing bouncing
    What do I even hold to be true to me?
    I still haven’t made a point
    Pointless, all of it,
    So it would seem
    Intelligent but still not like it seems
    Intel
    Intel
    Intell me I’m in hell and it feels like you can tell and see
    The sweat forming bead dripping down on my brow
    All these thoughts just shot the fuck out
    12 gauge, buckshot
    Calibre to kill some time
    Just don’t
    Interrupt me
    When I’m
    Fucking
    Looking
    For the point
    Looking for the point
    Sputtering
    Stuttering
    Mostly mostly
    Suffering
    Fucking
    Looking
    For the point
    I’m still talking
    Traffics really unpredictable
    I still haven’t found out if I consider it all livable
    #BipolarDisorder #Mania #Ramble #MightyPoets #BipolarStigma #FlightOfIdeas