Stuttering & Alzheimer’s

My dad and I have never had the best or closest relationship. He left my mom with 3 kids when I was 4 years old and moved into a dingy little mobile home on the edge of town. I would learn later that he’d had a affair, but I also know he and my mom weren’t very compatible. 2 years later my mom moved us a few states away and while he had visitation rights, I didn’t see him all that often. We used to spend a month in the summers with him though, and I have great memories of those times.

The times we were with him were always about doing stuff: camping, boating, skiing; never about real communication. Even though we both stuttered, He never talked to me about it. As a child I was happy for this. My mom, stepdad and speech therapists made me feel like I wasn’t even trying to work on it. It was my personal weakness that would suddenly not be an issue when I was with my dad.

Years later I moved to Chicago which was only a short train ride to my hometown and we saw a lot more of each other. Our relationship strengthened quite a bit and we really started to talk about things. We often sipped wine and talked for hours about politics, books, history and philosophy.   At this point I was completely covert about my stutter but much more aware of his. It made me feel uncomfortable. It was the last thing I wanted to talk about.

Fast forward even more years and we find ourselves in the same town again. About 5 years ago he received an Alzheimer’s diagnosis and it became evident that he was losing the ability to care for himself. When we moved him here he could still do some cooking and didn’t need us around every day. Even though I read everything I could find, I had no idea what caring for a parent with Alzheimer’s would really entail.

Over the past few years, the intersection of stuttering and Alzheimer’s has made communication increasingly difficult for him.  He has lost his huge vocabulary, and struggles to come up with the names of people and everyday objects. When he does have an idea of what he wants to say, he often loses it if he gets stuck in a stutter. I know he is frustrated and depressed about it.

I regret not pushing him to talk about stuttering while he was able. There was a small window after I accepted my own stutter and before Alzheimer’s stole his ability to comprehend where we might have had a real conversation.  It’s hard to say how it would have gone, but perhaps it would have opened a door to more frank discussions now. Stuttering is threaded through our whole lives and experiences together but it has left us in very different places. I can mire in my own regrets, but that isn’t very productive so I will just have to accept that it is what it is.

I don’t have a good way to end this and I will most likely write more as time goes on.



Spreading Awareness

It’s International Stuttering Awareness Day once again! This year I REALLY wanted to attend the NYCStutters one day conference, but with parent/teacher conferences last week and a tight schedule at work this week, I just couldn’t make that happen. I also couldn’t make the zine I had planned happen either. I waited until too late to try to figure out InDesign and even with the help of my daughter and husband who both have experience in graphic arts and layout, we couldn’t get it to work. My apologies to those who submitted work. There was one really amazing comic submitted by a young girl from chicago that was so great I got permission to share it here.  Kudos to Stella M. She has a serious future in stuttering advocacy and comic arts!

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Despite all the disappointments, I did get to participate in a stuttering awareness day activity with the American Institute of stuttering. We set up a table on the Atlanta BeltLine near the AIS office and spent the day educating passers by on stuttering. We couldn’t have asked for a more beautiful day and most everyone we talked to was responsive and learned something about stuttering. We even had a few folks hang out and talk to us for a while.


Reflection on NSA Chicago 2018

All year I’ve looked forward to the National Stuttering Association conference because it would be held in downtown Chicago at the Sheraton Grand Hotel.  Leading up to the conference I was sure I would have all sorts of emotions once back in my former home town, especially ones involving my old covert self vs my new stutter-positive self. But surprisingly this didn’t really happen. The thing is, I didn’t go to any of my old haunts. The conference was held in River North– A place I very rarely ever went over a decade ago when I was living in the city. I also did a lot of the touristy things I was too ‘cool’ to do back when I lived there. If I’d had a few more days (and could time travel), I’d have loved to show my friends Wicker Park as it existed in the 90’s: Earwax, The Empty Bottle, Milk of Burgundy etc.. But those places are gone– at least the versions I used to know.

Unexpectedly this conference turned out to be much more about stepping outside of my comfort zone rather than stepping back in. For instance, I was sad to not have a few of my conference besties there, but that pushed me to reach out to new people. Many casual acquaintances were solidified into friends-for-life, and I met so many incredible first-timers and folks I’d never talked to before. Having the opportunity to introduce old and new friends to places like Navy Pier, Water Tower, Millennium Park and Chinatown created memories to last a lifetime.

I have to admit that I didn’t participate in as many workshops this year. Our creative writing group held ours for the second year in a row, and it went really well. I also got a lot out of one focused on Mindfulness and one on the cultural impacts of stuttering. But the workshop that stood out the most for me involved building up resilience through repeated tasks that increase in difficulty at each level. Fluency may no longer be a goal for me, but I believe this method can be applied to avoidance reduction and desensitization very well.

Pushing my comfort zone probably peaked on the last day of the conference. I’ve always wanted to do something for open mic, but have been fearful of getting up in front of a lot of people.  However, this year I took it a step further and participated in the monologue portion of the closing ceremony. I literally spoke in front of the entire conference!

Over the next year, I hope to keep this momentum going. I want to do more presentations at work, increase my involvement in stuttering advocacy and generally be more social. Stepping outside of my comfort zone seems less of a challenge now and just a place I want be.

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Wasting Time

I wrote this post for the American Institute for Stuttering blog.  Please visit their site and see all they have to offer.

A few weeks ago I was in line at a small independent grocery store that has a nice selection of healthy, prepared lunch items– soups, pastas, salads etc. It was one of the days before the children started back to school and we teachers were able to go out and grab a quick bite. I picked out a TLT (tempeh, lettuce and tomato) sandwich and a container of watermelon chunks. I had a plan to eat it at a picnic table outside while I looked at my social networks.

The lines were long and most people waiting had similar containers of food. In front of me in line was an older woman with a basket full of nail polish and beauty products. I didn’t anticipate her taking too long so I stayed in line behind her even though another opened up.

However, when it was her turn to be rung up, she unloaded each item one at a time and discussed them with the cashier. She had numerous questions. Were the nail polishes xylene free? Were the colors the ones young people like? Would the purple go with an off-white bridesmaid’s dress? Was the shampoo tested on animals? Did the sunscreen leave a residue? She continued her barrage of questions despite the fact that the cashier knew very few of the answers and also despite the fact that there were people in line behind her with food for their quickly dwindling lunch hours.

She fully enjoyed the process of asking questions about each purchase and showed little concern about wasting anyone’s time. And while those of us who were waiting perhaps wished she would hurry up and maybe groaned internally, we didn’t say anything and for the most part, waited patiently.

This experience has stuck with me as I have been forced to ask myself why I care so much about taking a little longer to speak than other people. Although I’m pretty comfortable with stuttering openly out in public, I still go into a low key panic mode if I have to give a lot of information, especially if I feel there is a time limit. For example, I get anxious at the pharmacy when they ask for my name and birthdate. This is frequently made much worse if there’s a line behind me.

The anxiety that comes with time pressure is something I have been working on in my therapy at The American Institute for Stuttering. I want to be clear that I am not being asked to ‘slow down’ to increase fluency. In fact, one of the assignments I’ve had is to intentionally stutter more and longer. I am to essentially waste people’s time. As a kind of desensitization I am supposed to take longer than I need to get out what I want to say. This usually takes the form of either letting a block or repetition last much longer than it normally might or adding a few voluntaries. I have to admit this assignment has been really hard for me. I like to get my business done quickly.  I don’t want to be that woman talking about all her bottles of nail polish! I hate the idea of people getting annoyed by me taking up more than my allotted amount of time.

It’s not surprising that we feel rushed all the time. What Larry Dossey in 1982 termed time-sickness has become a national epidemic. People regularly go over the speed limit, or get frustrated when web pages won’t load instantaneously. Likewise we multi-task in order to accomplish more in less time. After all, time is money. How many lunches have we eaten while checking email or paying bills? We are part of a culture that celebrates overachievers and ambitious high flyers. This obsession with doing more in less time has made us ill. Chronic stress has long been linked to attention loss, elevated blood pressure and increased risk of cardiovascular and other health problems.

I love the idea that extending a block or prolonging a stutter might push against this notion that we should always be racing against the clock. In terms of my anxiety, I have already benefitted from it. Recently, I had a long block while ordering a dozen donuts for my class. Even though there was a line of people behind me, I didn’t get panicked. It also didn’t ruin my day like it might have a year ago. But taking time is not limited to the experience of stuttering.

There is so much good that can come out of slowing down in all aspects of our lives. Along with better health, we can improve our relationships.  We can connect at a much deeper level with others by really listening to what is said and not planning out a speedy rebuttal. When we slow down and take all the time we need, we begin think more deeply and clearly and we open ourselves up to the wonder of the world around us.

A Reflection on NSA 17 Dallas

Now that a week has passed since the National Stuttering Association conference in Dallas I’ve gained enough objectivity to reflect on two emergent themes: taking risks and intimacy.

Having been to one conference already, this year I had a different set of expectations. I knew how things were organized and had none of the first-timer anxieties. This comfort allowed me to take some risks that I never would have last year. Even before the conference began, I’d arranged to share a room with 3 women I didn’t know well, I joined a writers group that submitted a proposal for a workshop, committed to helping out a friend with a kids’ workshop and jumped at an opportunity to be in an improv skit in front of the other chapter leaders. During the conference, I kept up this momentum by participating in workshops that took me waaay out of my comfort zone, attending a drag show, inviting some teens out to lunch, and participating in a StutterTalk episode. I could go on.

Nor was I alone in this risk taking. Perhaps because it was my second conference I was able to see more clearly the actions of those around me. It seemed that people were constantly introducing themselves to others– not an easy task when you stutter. There were folks stuttering openly in the Starbucks line and joining in conversations with strangers at the pool. While I was aware of some of that last year, I was so overwhelmed by all the newness that my view was somewhat obscured.

What I found this year was that being able to take these risks opened me and others up to the intimacy available at the conference. The risks we took helped to peel away all the layers built up to cover our shame and fear of stuttering and at the same time created a pathway to connect deeply with both community and with individuals. Perhaps as well, it was the climate of the hotel. It was much darker than the Hyatt where last year’s conference was held. Or maybe it was the relatively few places to go outside the hotel that forced us to stay in and huddle around the bar. But, I think it was bigger than that.

Like many introverts who stutter, I often find socializing difficult and draining but I do crave deep exchanges. That is where the distinction lies. ‘Socializing’ is something we do with strangers or only somewhat familiar individuals. It implies superficiality. However, there was nothing superficial about our conversations during the conference. Rather, they leapt immediately to intense subjects like faith, substance abuse, disability and mental health, and often how these interact with our identities as people who stutter. Even those conversations that had us rolling with laughter seem significant in hindsight.

I don’t think this would be possible if we were not all people who stutter. We have this wonderful common framework that unifies us. In an everyday setting it might take years of knowing someone to dig this deep, but because we are willing to take these risks we get to level-jump past all the bullshit and dig into the really meaningful stuff.

Now that the conference is over, I can’t help but wonder how we continue the momentum and use it to create intimacy with our allies and build bridges to other communities. How do we take what we learned from the workshops on social justice and take even greater risks outside of the safety of the hotel?

What I’m left with is so similar to what I felt after last year’s conference. The reflection I wrote last year ended with the sentiment “In my heart and mind the conference is not really over. There is so much work to be done”. I feel exactly the same way now.

Stuttering Privilege

My friend Chris made an interesting observation awhile back. He suggested that stuttering is a unique disability because we know what it feels like not to stutter– that is, people who stutter know exactly what it’s like to be fluent. This isn’t always true of other disabilities. For example, Deaf people don’t typically have periods where they can hear clearly, and people with dyslexia don’t move in and out of being able to read well.  I’m sure there are other exceptions, but stuttering does seem odd because of its variability. Some days we are more fluent than others. Our periods of fluency can last for weeks or even longer. Likewise our stuttering can be more or less pronounced over periods of time.

I have experienced this throughout my life for sure. Even when I was covert, I had times where it was much harder to hide or avoid my stutter. I know stress contributes to this, but sometimes it seems completely random. I often feel like I am moving up and down a scale. I can’t predict on any given day where I will be on the scale either; it’s often a surprise.

For the past few weeks, I have been much farther on the dysfluent end of the scale than I typically am. I am blocking much more often and those blocks last longer. My secondaries are flaring up as well.  At times I make a weird squawking sound when I can get a little air to pass through my vocal folds–at least that’s how I imagine it. I can only describe it as something between a sea lion and a vulture. It’s not a pleasant sound– and I do find a lot stuttering to be pleasant.

Because of this long stay on the more dysfluent end of the scale, I have felt some of the progress I have made in accepting and loving my stutter becoming challenged. I have dug up old speech tools to get through the trickiest situations. I have even considered therapy again, (granted the therapy I’ve looked into is through AIS and is more in-line with Avoidance Reduction Therapy and Stuttering Modification). I’m going to borrow some language from the LGBTQ community when I say, it is easier to be ‘out and proud’ when I’m not stuttering as much.

So why do I value the periods of relative fluency over these periods of hard and frequent blocks? Going back to what my friend said, might relative fluency at times make periods of strong stuttering harder to cope with? I think this is true. I can’t help but pine for the days when things will easier for sure. but I think there are other contributors.

On the phone a few days ago with a Canadian friend who stutters, I blocked and squawked and struggled to hold up my end of the conversation, and in the end felt some of the old shame creeping back. I know she wasn’t judging me, but I felt bad for feeling bad. These same feelings come up when I think of my next NSA chapter meeting. I want to tell my friends that I’m having a hard time, but I feel like I shouldn’t be. If I really have accepted and learned to love my stutter, shouldn’t that always be the case– even when the going gets tough? I also have to admit that I’m worried this dysfluent period will still be going on when I present at the NSA conference. Not only am I worried about taking too much time and making unpleasant sounds, but of having to use speech tools in front of my peers who have rejected traditional techniques. I know deep down that all these thoughts and fears are unreasonable– the place I should feel safest is with my friends who also stutter– but I think these feelings might be coming from a valid place..

I don’t want to diminish the pressure fluent society puts on us, or the pressure we put on ourselves individually, but I think the stuttering community is not completely innocent of assigning a privilege to being more fluent, lacking a lot of secondaries or having a more ‘pleasant’ sounding stutter.  Maybe this is my own paranoid hang up but I do have some basis for thinking this.

I’ve done a fair share of participating in video chats with other stutters. Usually these are pretty equitable, but there are times when the more fluent people dominate or when someone gets interrupted or talked over while they are working through a block. It doesn’t happen often, but it does occasionally–it’s happened to me. Probably the worst thing I’ve heard about was when someone with a strong stutter was asked to shorten a question during an NSA presentation, for the sake of time.

I love podcasts by and for people who stutter, and I think these could be a great place to celebrate the variability that we stutterers share. I really love the most recent episode of StutterTalk that features some of the NYC chapter folks. I appreciate the decision to leave in (all or at least some of) the blocks and longer stutters. We also need to be willing to let the squawks, blocks and odd secondaries out, especially around each other. There is beauty in them.  When we are together we need to encourage the folks with the strong stutters to have the floor for as long as they need. Not only will their voices help define stuttering to the rest of the world, but I also believe having this exposure will help us when and if we come to a difficult place in our own journeys.