Make Room For The Stuttering

Posts Tagged ‘National Stuttering Association

I haven’t written in a while as I’ve been grappling with big issues. Anxiety and depression, talking less often to people, feeling isolated, fun stuff like that.

But my mind keeps wandering to relevance. I worry that I am not relevant to, well, anyone. I don’t work, and I don’t have regular social interaction, unless you count the “thank you” at the grocery store. I felt relevant and productive when I worked, both with colleagues and clients.

So I’ve been stewing over why I don’t feel relevant. And have been thinking a lot of about with who do we need to be relevant to, in order to feel relevant. Is it engagement with others that makes me/us feel relevant, is it doing something for someone else, or is it just about being relevant to myself?

It’s so easy to let negative self-talk and self loathing consume our thoughts, as I did for so long because of stuttering. I felt like I didn’t measure up, or ever could, to others who did not stutter. Avoidance became a self preserving habit, one that spilled over into other areas of my life. I intentionally chose not to interact with potential friends or many co-workers out of shame and fear of being seen in a negative light. That used to eat me up.

Then I found the stuttering community and dove in and realized instantly that helping others helped me. In little ways: encouraging others, sharing my stories, celebrating triumphs with others who may not even realize what they just did or said was a triumph.

I felt relevant in that world. I took on volunteer opportunities, led groups, presented workshops and generally felt good. I felt I was making a difference. I felt relevant.

But it seems now that everything has changed. I’ve had major life changes that have been difficult. I stepped down from the NSA Board of Directors because I thought my messy life would adversely affect my ability to help others and be a leader. I also worried that financially I could not contribute and of course afford to pay my way to conferences. At times, I feel extremely irrelevant in the stuttering community, which is funny, because it was deep involvement that helped me so much and made me see, really see, that I could help others.

I guess it’s most important to feel relevant to yourself. Find ways to be relevant. I’ve been trying to do that, from afar, on Zoom, like most of us have become so used to. I try to talk to people as often as I can, but honestly, that’s an effort, just like getting out of bed on some days.

But that’s OK. Being messy and unsure is what makes us human. I remind myself of that often. Helping others to realize that being messy, including not taking a shower every day or hardly making the bed, is relevant because I know others can relate to that. We all are messy. And being able to be comfortable with that helps me realize that relevance is a matter of perspective.

It’s been such a rollercoaster year for me, as has 2021 been for everyone. I think we’ve gone through the quickest slowest two years ever.

For me personally, I’ve struggled with physical health and mental health issues and this year, everything has seemed so heightened and intense. It’s hard to live alone and experience a lot of changes. We all know that changes will occur in our lives, but I didn’t see it coming how fast things have happened for me.

I haven’t worked in over two years and have felt the strain and stress of constant worry and panic that I won’t have the means to support myself. My depression sometimes stalls me for days. I don’t sleep well at night so often sleep a lot during the day. I am always tired. Depression does that to you.

Physically, it’s been a lot harder to get around this year, as my neuropathy inflammation flares up much more often and sometimes I can’t even move my legs, as they throb from being so tingly and inflamed. So, I don’t get out much and barely exercise, even though I know it would be so good for me and help me sleep at night.

To say I have been really down is an understatement. I have not been myself. And I am one of those people who has a very hard time asking for help. I think because of stuttering I always tried to overcompensate and be a “people pleaser,” to get people to like me. I didn’t think anyone would like me because of stuttering. Silly now, but that’s what I thought for a long time.

I reached a breaking point a few weeks ago and needed help. Friends called me at the exact time I needed them to and they “talked me down from the ledge.” They probably saved me that night. They offered to help and I accepted it, with some initial shame that has now turned to pure gratitude.

These friends from the stuttering community opened their arms and hearts to embrace me and show me that I am not alone. The strength of the stuttering community lifted me up when I needed it the most. These friends dropped everything to help me and I couldn’t be more grateful.

The mission of the NSA never spoke louder to me. If you stutter, you are not alone.

Earlier this week, I had a chance to talk with someone I met through a virtual NSA event last year. It’s always invigorating to find out what others are doing to manage their stuttering, especially during these unprecedented times of virtual everything.

He remembered that I had expressed interest in learning about how a particular therapy went that he had considered.

He did the McGuire Program, which is not a therapy program per se, but is a speech management program run by past graduates of the program. I’ve interviewed several people over the years that have participated and many have felt it is beneficial. It’s an intensive four day program, that requires 10-12 hour commitments each day. My friend participated virtually, so it was only three days, but just as intense. He said it was 12-13 hours each day.

He shared why he chose to take the plunge to enroll and what he learned. As I’ve learned from other participants, it’s a technique based on costal breathing, which helps many people deliberately focus on speaking on exhaled breaths. It’s not for everybody, that’s for sure, but my buddy seemed grateful to have tried a different way of managing stuttering.

He said initially he was practicing 2-3 hours daily, but may have lessened up on that now. He also shared how pleased he is knowing he’ll have life time follow up and support from past graduates.

It’s so important to have a support system and a circle who really understands the complexity of stuttering.

I am so glad he reached out and that we took time to connect and talk.

Saying “let’s keep in touch” and then not, robs of us the opportunity to be there for our friends and truly walk the walk that “if you stutter, you are not alone”.

When someone calls or emails, answer the call. It’s important.

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Episode 238 features Lisa Nguyen, who hails from Raleigh, North Carolina. Lisa works in home health care, and plans to start a graduate certificate degree in Health Administration Management. Her career goal is to help improve the efficiency of our health care system and contribute to lowering the costs of health care.

Lisa spent time as a hospice volunteer. She enjoys hearing about the personal experiences and life stories of older people. She says she’ll encourage those adults who are able, to do life reviews. For those who cannot, Lisa is happy to be there and hold their hand.

Lisa is also co-chapter leader of the adult National Stuttering Association (NSA) support group chapter in Raleigh. Her SLP and NSA chapter leader was impressed with the work Lisa had done over the years with her stuttering and felt Lisa was ready for a leadership role. Lisa has taken to it like a fish out of water.

Listen in as we discuss presence, moving forward and disclosure. It’s clear that Lisa also has the skill of “listening in all the right places.”

This year is the first time in 15 years that I have not attended the annual NSA conference. I found the NSA in 2006 and have gone 15 consecutive times. I see friends posting pictures on social media and I’m finding that I am fiercely missing the conference and my friends. Some of those friends I only see once a year, but it’s OK, as we pick up right where we left off.

For so long, I felt shame and fear about stuttering, thinking as many of us do, that I was the only one who stutters. It was never discussed in my family, so the feelings of shame, guilt, and fear kept me in hiding for a long time.

When I attended my first conference in 2006, it was like a weight had been lifted off my chest. There were other people and all looked normal, like me. We just talked differently. That profound experience helped me realize that I could now help people deal with shame and coming out of hiding.

This blog and my podcast gives me joy. I’m using my experience to help someone else peel that personal stigma off.

Friend Hanan has more than once told me that finding others who stutter has been like oxygen for him.

That and finding our tribe – where we can stutter openly with no fear of judgment. I am really missing my tribe, my friends, my mentors.

I am having surgery on my right hand this Friday, so I may not be able to type or text for a while. I needed to post this today. I love seeing the pictures friends are posting on social media, but it is also bittersweet.

whs logo smallEpisode 237 features Ashleigh Givens, who hails from Detroit, Michigan. Ashleigh is a junior in college, and she is majoring in Digital Photography. She started in photography as a freelancer at 15 or 16 years old, and began to believe that she was good at this and she decided to study this professionally.

Ashleigh’s end goal is to work as a magazine photographer with high end fashion shoots.

We covered a lot ground in this episode. Listen in as we talk about the many speech therapy programs she’s gone through, including getting a Speech Easy device. That had to be fitted for her, and the SLP who did that became Ashleigh’s SLP for a while.

Ashleigh’s first National Stuttering Association conference was in 2019 in Fort Lauderdale. She enthusiastically described how much it meant to her, and her mom, to have a First Timer Ambassador call her in advance of the conference. Both mom and Ashleigh found that connection crucial for a good first conference. Ashleigh did meet her ambassador in person. Ashleigh is now part of the NSA Teen Advisory Council (TAC) and is looking forward to her second conference next month in Austin, Texas.

Ashleigh also talks about the fascinating project she did for school, that uses photography to illustrate what she looks like when she stutters, and what listeners look like when reacting to her stutter. See link below. And Ashleigh recently was featured in a NSA profile.

This was an amazing conversation with a rising star in the NSA.

This link illustrates the project Ashleigh did about what stuttering looks like to the outside world. It is broken into three categories: “What You See,” “What You Don’t See,” and “What I See.” It’s quite profound.

Yesterday I had the opportunity to present a session on covert stuttering at the South Carolina Speech and Hearing Association. A good friend and SLP, Charley Adams, co-facilitated with me. Our session was titled “Deep Cover – Exploring Covert Stuttering.” The audience of 80+ consisted of licensed SLPs and SLP students.

It seems that SLPs look forward to learning about covert stuttering, as there’s not a whole lot of information out there in the research world. It’s especially helpful to learn about covert stuttering from someone who covertly stuttered for years. Me!

We had the first session of the day, on the first of the 3-day conference. We were given 90 minutes. At first I thought that was too much time, but actually we could have gone much longer.

We helped educate SLPs why people want to hide stuttering and we gave examples of avoidance behaviors.

I think the biggest take-away was considering the answer to the question “how do you help a stutterer who does not stutter?”

 

Episode 230 features Lucy Reed Ward, who hails from Foley, Alabama. She is a Speech Language Pathologist (SLP) and recently retired from a school SLP job.

But she actually didn’t retire! She now works with people who stutter via teletherapy. She tells us that she feels her career has just begun. She is also working on opening a private practice.

Listen in to this great conversation about covert stuttering, kicking shame and fear to the curb, and her experiences with her own therapy journey. Lucy shared an important revelation about shame. Once you speak your shame, it loses its power.

We also discuss self limiting career choices, meeting others who stutter, and learning how to stutter. Lucy also brought up how she met a lot of people who stutter from an old email listserv called “Stutt-L” which doesn’t exist anymore due to the rapid growth of social media. Stutt-L was also my first introduction to learning that many people stutter. It wasn’t just me! Like Lucy, it was so wonderful meeting in person those we’d already become friends with due to that ancient email group.

Don’t miss out – listen today!

Episode 229 features Leah Graham, who hails from Charlotte, North Carolina. Leah stays busy through her work as a Childcare Financial Aid Social Worker. Her wife and two dogs keep her busy too!

Listen in as we discuss the challenges of using the phone more (because of the pandemic,) advertising and disclosure, Leah’s therapy experience, and being non-apologetic about stuttering.

We also discuss effective communication. Leah says, “When I stutter freely and let it flow, I believe I am at my best as an effective communicator.”

Leah also speaks about career aspirations. She used to keep a mental list of jobs she couldn’t do. She doesn’t think that way anymore. She wants to be a lawyer, and has shed the belief that she cannot do this. Leah just took the LSAT exam, the first step towards achievement of her goal.

We wind up this great conversation talking about authenticity and being willing to strip away the layers of doubt and shame. Once those layers are broken down, Leah proudly exclaims, “The world is my oyster.” Yes it is, for Leah and for any of us who stutter.

 

Episode 228 features return guest Anita Blom. Anita is Dutch born, but has lived in Sweden long enough to consider herself as Swedish. She is a global advocate for stuttering, and has been since she was 27 years old, when she first met another person who stutters.

Anita was a guest 10 years ago, and we talked about how she was finally proud of herself. That episode came shortly after I had met Anita at a National Stuttering Association conference, where she was a keynote speaker.

A lot has changed for Anita over the years, but she remains a fierce advocate for people who stutter, especially children who stutter. Anita calls it her “crusade.”

Listen in as we discuss the positives that we have gained from the pandemic year 2020. While lockdowns and social distancing kept us apart, virtual meetings took off and Anita discovered that video chats (mainly Zoom) has enabled advocates to reach so many more people. People who cannot afford the expenses of an in-person conference suddenly were able to connect virtually, and did we ever.

We also talked about how virtual meetings can be exhausting, but the benefits are worth it. And we touch on how women experience stuttering differently than men, and how often women, especially women who stutter can feel “little” in men’s spaces.

Once we are able to resume in-person meetings again, we both agree that we should continue with virtual meetings as well, as we’ve seen the huge benefits of inclusion.

Thank you Anita for being a return guest and for sharing so honestly. You’re definitely a stuttering force to reckon with.

Episode 226 features Stephanie Nicolai, who hails from San Diego, CA, and presently lives in Peoria, Arizona. Stephanie is married and a mom to a 2 and 1/2 year old son, and works full time as a psychologist.

I wondered why Stephanie chose a profession where she literally talks all day. She explains taking a psychology course while still in high school and wound up loving it. She says she is passionate about human behavior. Stephanie also mentions the natural empathy she can pour into other people.

Listen in as we talk about stuttering trauma and how humans have more in common with each other than they think they do.

We also talk about how the National Stuttering Association was a game changer for both her and her parents. Stephanie’s first NSA experience was at a “Family Fun Day.” it was there that Stephanie first heard other people stuttering and then she and her parents were hooked. Stephanie describes her parents as very supportive and involved in the NSA. Her mom started NSA chapters for kids and teens, and both parents can be seen in some volunteer capacity at annual conferences.

We also discuss the unique, fun opportunity Stephanie had when she auditioned and landed a spot on the TV show “Wheel of Fortune.” Stephanie’s episode aired recently. We’ll let you listen in to hear how she fared on the show.

We marveled how a person who stutters can do anything, including appearing on a national TV show and do well. She says, “we are our own worst enemies.”

Go for what you want – don’t let stuttering stop you. Lemonade sure tastes good.

 

Episode 225 features return guest Alexandra D’Agostino, who hails from Ottawa, Canada. Alexandra is 27 years old, has recently become a Registered Nurse and is looking forward to a new job. Alexandra decided to get into nursing/medicine after realizing it would be a good career fit. She has always liked medicine, even going so far as watching surgeries on YouTube.

Alexandra was a guest four years ago, in September 2016, where we discussed the Cycles of Stuttering. As noted in her previous episode, Alexandra is still very much involved in the stuttering community, as are her parents. Alex notes that she had to miss two NSA conferences when she was still in Nursing school, but her mom went to the NSA conference anyway.

Listen in as we discuss advertising, disclosure, authenticity and volunteering.

Alexandra also shares about her involvement in the Canadian Stuttering Association hosting their first online virtual conference last month. It was a very successful event and drew people who might not have been able to attend due to distance. We talked about the potential of stuttering associations offering both in-person and virtual events so that more people can be included.

What a great conversation.

 

 

Episode 223 features Alexis Keiser, a 20 year old college junior. She is from New Jersey, but is attending Sacred Heart University in Fairfield, CT. Alexis is majoring in Hospitality, and declares herself a real “people person.” Her dream job is to work for Walt Disney Company in Theme Park Operations.

Alexis is super involved and busy in college, actively participating in leadership positions in several clubs. All of her involvement includes lots of communication, which she acknowledges is not easy as a person who stutters.

Listen in as we discuss speech therapy goals, meeting other people who stutter, feeling towards stuttering, the journey to acceptance and finally, learning to be unapologetic about stuttering.

Oh, and Alexis is a huge podcast fan, and never could have imagined even two years ago that she’d be a guest on one of her favorite podcasts.

Episode 222 features Aisha Haynes, who hails from Columbia, South Carolina. Dr. Aisha Haynes is the Assistant Director for the Center for Teaching Excellence. She teaches two online courses at the university. For fun, Aisha enjoys traveling, trying and eating new food, and adventurous activities.

Aisha had been a covert stutterer for many years. She shares that it’s only been over the last 5 years or so that she has given herself permission to “stutter really well.”

Listen in as we discuss disclosure and advertising, not being able to hide stuttering anymore, and being more comfortable in her stuttering skin. The title of this episode comes from an article that Aisha was featured in at her university, which she describes as her “coming out story.”

Below please find a video of Aisha and colleague Dr. Charley Adams discussing stuttering at the university.

We all are probably lining up to kick 2020 to the curb as soon as we can. It’s been an awful year for everyone. Lock downs, quarantines, social distancing and wearing masks. All of it has been relentless since early March 2020 when the USA joined other countries trying to battle the Covid pandemic. Most of us alive today have never experienced such a year of grave losses, of people, employment and our basic interactions with each other.

I am a hugger and I have not been able to hug anyone for 6+ months.

Almost all of our interactions with others has been virtual, using the many options for video chats. That’s been a great way to at least talk to people.

The stuttering community has felt all these losses, some more acutely than others. I’ve heard countless stories of people who stutter experiencing difficulty when masked up and trying to speak. But we’ve stood and fiercely showed our resilience.

The stuttering community has stepped up and many of the stuttering support groups have hosted quite a few virtual sessions to help people feel connected.

This brings a nice transition into my announcement. Every year in October, a small by mighty team coordinates a 3 week online conference that runs from October 1 – October 22, which is the annual “International Stuttering Awareness Day.” This is a day that people from all over the world celebrate stuttering in their countries to raise awareness and educate communities.

I want to draw your attention to the annual online conference. It is interactive, meaning people will have the chance to interact with authors of papers, videos, poems and other media platform. This is the one a year that people come together for a global conference.

This year’s theme is “Resilience and Bouncing Back,” a theme that many people who stutter can relate to. We have around 50 submissions, submitted by PWS ourselves, SLP’s and other professionals, and family members of a person who stutters.

It’s a great theme – I was excited to find out about the theme and I enthusiastically wrote a meaningful piece that speaks to me about my journey of resilience.

The conference will go live on September 30 at noon, since it will be October 1 somewhere in the world. Check it out – you’ll be happy with the many superb contributions and you’ll so many different things about stuttering.

The online ISAD Conference begins October 1, 2020.


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© Pamela A Mertz and Make Room For The Stuttering, 2009 - 2022. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Pamela A Mertz and Make Room For The Stuttering with appropriate and specific direction to the original content. Same protection applies to the podcasts linked to this blog, "Women Who Stutter: Our Stories" and "He Stutters: She Asks Him." Please give credit to owner/author Pamela A Mertz 2022.
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