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The long road to stuttering acceptance

As I approach the one-year anniversary of this blog and opening up (almost) completely about my stutter, I thought I’d take a chance to talk more about how exactly I got to this point of acceptance.

This was a very, very long process. And I know it’s not the same for others who stutter. Even when I went to the NSA conference, I met people who stutter more and less than I do. Keep in mind that I graduated high school in 1997, so it was well before the Internet as we know it today.

However, this might at least offer some guidance to those still in school wondering if it’ll get better, or what can be done to make things better. And by “better,” I mean more comfortable, more tolerable, and less stressful on a day-to-day basis.

Elementary school – (Ages 7-11) I was aware that I stuttered, but didn’t understand its implications at all. Did speech therapy, but nobody gave me the big picture. Also, I was fluent during therapy, so that didn’t help. No mention on the homefront about my speech. (pretty much continues to present day, actually)

Junior high school – (11-15) My sixth grade teacher commended me at the end of the year about my accomplishments despite my stutter. This was the first time that a non-therapist recognized it and brought it up. I did more therapy in school, but I was usually fluent during those sessions. I didn’t realize it at the time, but I was also growing more comfortable and confident in my environment — and gaining friends who didn’t mind the stutter. This was cyclical — low comfort and confidence going into junior high, riding high on the way out. Going into high school, I was down low again, but managed to work back up by the time I graduated.

High School – (15-18) Definitely knew that I had a stutter, and finally met someone else who did as well. We were in some of the same classes together, and we even looked alike. He was a lot more open about it. Not at all covert. But he and I never talked about it, and I regret that. Through peer pressure, I became more involved in the performing arts (on a very, very small scale) and that did a lot of good for my confidence even though it scared the hell out of me at times. I didn’t stutter when I was on stage doing Who’s on First (two nights!) when I was a senior. I had a different therapist in high school, and she taught me about easy onsets and breathing. These are things that I still try to use today, and it’s made a huge difference.

College – (18-22) At this point I should say that I still wasn’t “thinking” about the long-term effects of stuttering. I didn’t know about job interviews, going to meetings, giving presentations and whatever else the corporate world had for me. My summer jobs had been retail and as a bank teller. Not a lot of talking, and it was easy to be covert. I thought that was normal. Since high school, I have not seen an SLP. During the college I do remember introducing myself to others at the student newspaper, stuttering-be-damned. Once that was done, it was easy to maintain those friendships. And as people came and went at the paper, it was easier for introductions. Academically, I did what was required but never bothered talking to professors or asking for help. It just wasn’t something I was used to.

First job – (22-25) I had problems during some of the interviews only because I didn’t know what to say. But after a while I became pretty decent at just bantering and smiling. That being said, I did get my first job through my dad’s connections, and once there, it was easy to be the young engineer who didn’t know anything. I got used to keeping my mouth shut and trying to absorb as much as possible. During the first five years out of college, I never gave my stutter any thought. And despite the Internet, I never bothered researching it or finding any help groups.

Subsequent jobs – (25-31) I can’t pinpoint an exact date, but I started reflecting a lot more about my stuttering and my life. This probably happened when I found out about the Pagoclone trial. And so I started to keep journals. I think the boredom of corporate travel — hotels and coffee shops helped a lot with this. I thought that I could put it all together into a book. Despite all the writing and thinking, I still didn’t reach out to anybody. The Pagoclone trial wasn’t through an SLP. Through writing and reflecting, I started to realize that my general policy of not-asking and not-talking was entirely stuttering-related.

Moving to Saudi – (31-36) I feel like things sort of “settled down” a lot more in my working and home life when we moved to Saudi. Before that, I was traveling a lot more, worried about general job security, saving whatever money I could, and raising a family. But in Saudi more things are taken care of, and I was able to sit down with my stuttering thoughts a lot more. I came here when I was 31. So that’s how long it took to really start looking around online and finding out more about stuttering.

I realized after a while that publishing a book wouldn’t be feasible. But I was reading a lot more blogs, so I decided that might be the best route. But the stuttering still held me back — in being overt. I was afraid of so many things — that were all imaginary. That if someone found out it might affect my job, what my friends or family might think, what having to talk more about it would do to my psyche. So not until I turned 35 last year did I go ahead with the site.

So what does this all mean? It’s a long journey. I never researched stuttering online because it was bothering me or holding me back (or so I thought). I only researched it because I wanted to share my journey with others. For the longest time I thought it was very personal, something that I should have to struggle with on my own. I’ve found out the opposite of course. I’m not alone, and a lot of other people are going through this.

I think for a long time I also didn’t research stuttering online because I didn’t want to admit to myself that I stuttered. That’s an absurd thing to say, but I think it’s true for the majority of covert stutterers. If I don’t learn about it, it doesn’t exist to me, and it won’t bother me [any more than it does]. Of course I’ve since learned that it’ll actually make you feel better knowing more. And it’s really fun to get together with other people who stutter and connect and tell stories.

I will also say that a lot of things came together at the right time. Working at the same company for a number of years gave me the confidence that stuttering more at work wouldn’t have any negative effect. Also being here gave me the financial means to start attending the NSA Conference regularly.

Do I wish I had come to this point earlier? I don’t know. I’m not sure I would have been ready for it. On the one hand, colleagues have always been good to me, so maybe it wouldn’t have made a difference. What about during college or before that? That’s even harder to say — so I’ll go with “it’s complicated.” It’s that idea of, well, had I known and been more aware, would that have had a major impact? I don’t think now it’s going to make any major career impacts, but before it would have been possible. On the other hand, isn’t that true for fluent people anyway? As life goes on, you become more narrow in your pursuits and ambition.

Sensors and Stuttering

I came across this article the other day.

Reading this, I thought it would be very interesting to apply this to stuttering. They mentioned that they’re already using it for some physio purposes:

In similar work with the English national rugby team, McLaren engineers took data that the coaches were already gathering from sensors placed on players during practice and designed algorithms to glean new information. Hargrove’s analysts were able, for example, to determine how fatigued a player was—and therefore how susceptible to injury—by how long it took him to get up after being tackled and how much his pace declined over the course of an afternoon.

And as someone who was on the Pagoclone trial, this was really intriguing:

For all the sophistication of the drug discovery process, trying them out on people remains a time-consuming, low-tech process. Volunteers take the drug (or a placebo) and then are monitored by a doctor through visits every few months, so data points are few and far between. Mayhew wondered whether patients could be monitored remotely, like rugby players and pursuit cyclists. If information could be constantly logged and transmitted back to the testers, a drug’s effects—or lack thereof—could be spotted much sooner, saving labor, time, and maybe a lot of money.

What didn’t impress me about being on the Pagoclone trial was what it says above — the visits that were few and far between. I was asked to rate my stuttering in the past few days (or weeks). And it never occurred to me to keep a journal about any of this. So it was not only really, really subjective, but probably wildly inconsistent as well.

So how would this work for those of us who stutter? Well, something like a [better looking] Google Glass apparatus that records verbal interactions. And then …? I’m not a speech pathologist, but I imagine it would be interesting to go back through a bunch of the communications that happened in the patient’s life. But of course there’s the “big” part of the “big data.” That is, so much data to sort through. Hours and hours of conversations. The user would probably have to actively (or after an interaction) edit or tag or save the conversation. Or maybe they could push a button on the glasses or click on an app that would place a marker in the recording for reference later.

And then? Well, it’s good and evil, right? It’s good because the SLP can see if the patient is making progress. The patient can also set forth challenges and slowly improve with fluency and confidence. They can practice techniques out in the wild and know they’re using the same technique in different situations — or a few different techniques in the same situation.

But there’s the evil, too … you can go through your own data and say, well, I always stutter when I’m checking into a flight in person. So I’m only ever going to book flights on airlines with check-in kiosks. The data could show that you always stutter when at a certain restaurant … or with a certain person.

Would I do something like this? Yeah, it’d be fun for a few weeks, I think. It’d be interesting to look at the data. We probably think we stutter a lot more than we do. We probably do a lot better than we think — especially on thing like the phone or in conversations (after we’ve introduced ourselves.)

FAQs

1. When did you start stuttering?

When I was 7, I remember distinctly sitting in second grade and trying to say the word “eye” as I told a quick anecdote. I don’t remember any speaking difficulties during kindergarten or first grade. But after second grade, things changed.

2. Are there certain sounds that you always stutter on?

No, not even my name. I mean, that’s the worst, of course, especially during introductions. But I can say it without stuttering now and again. As anybody who stutters knows, this is the most frustrating part.

3. What do you friends/family/colleagues/strangers think of your stuttering?

I don’t know. But I do care. Which is why I’ve never talked about it. Until now. The older I get, the less I worry about what other people think about my stutter. I think that if I focus on the message, they will as well.

4. Has your stutter gotten better or worse over the years?

Both. Thinking back, I think there were probably months or years where it wasn’t an issue. And then there are long stretches where it seems I can’t say anything and am frustrated all the time. Right now I think I’m somewhere in the middle. Update — since going to the NSA conference and accepting my stutter more, I am definitely stuttering more. But I’m communicating better. Does that even make sense? Yes, it does — I’m saying what I want to say, when I want to say it. And if it takes a little longer to come out, so be it.

January 2020 update — for the past two years, my stuttering hasn’t been too bad. I advertised when I got my latest job, and that seems to have reduced a lot of stress. I never have to think if someone is worry about what’s wrong with me.

5. What treatments/therapies have you tried?

Not much, just speech therapy during school and then Pagoclone during its trials. I refuse to try anything that I have to pay for up front or that someone says will “cure” stuttering. There is no cure for stuttering, and I have come to grips with that. Until there is a drug or therapy that’s scientifically proven on a large group, I’ll continue to stutter, and I’ll continue to get through life. Some days will be better than others.

6. Do you think stuttering has held you back in any way during your life?

Yes and no. I’m very happy with where I am in life and with my career and choice. But during the past few years as I’ve started to write down more thoughts on stuttering (my own notes) I’ve come to see that many of the decisions I’ve made — big and small — are rooted in my inability to speak at times. That’s what a large part of this blog is centered on — not just talking about speaking situations, but how those add up over time to create the person we are. I think a young person reading this site might identify with my background and subsequent decisions. And be more aware of how much is really dictated by the effects of stuttering.

7. Why this blog now?

For the past half-dozen or more years, I had this idea that I would write a book about my life and stuttering. So I’ve got several hundred handwritten and typed pages already of notes and daily observations. But I was beginning to see that a coherent book was a huge effort and not going to happen. I thought doing a book first and a blog to accompany it would be best. Now I think the other way around is better. That being said, I’ve tried my hand at blogging (other things) before and failed miserably after a few short months. With as many notes as I have on stuttering though, I should be able to power on for longer.

Update: Through these posts so far, I’ve written about 100,000 words. So that’s nearly a book anyway.

8. What was your worst day as a stutterer, and your best?

Worst day is easy — I had to get up in front of almost 400 people about ten years ago and introduce myself. Everybody at the conference was introducing themselves, and my heart was pounding as the microphone made its way to me. I could barely get my name out, and a woman standing behind me just laughed at me. Not a happy moment. As for the best, it’s hard to say — anytime I can command a small meeting confidently or get through a phone call is a huge win. There are also many times that come up where I feel the need to add commentary in a meeting — and press on even if it means stuttering through it.

9. Are you worried about labeling yourself as someone who stutters?

Well, the funny thing of course is that everybody I know knows I stutter. But we just never talk about it. I guess the concern I have is that I don’t want anybody to treat me any differently because I do. I think that’s been another concern in the back of my mind about starting this blog.

10. Why don’t you have a (specific social media) account?

Since there’s no cure for stuttering, this is a long conversation. I’m more interested in cultivating a community on the site and through very limited social media. I’d rather do a post, get some e-mails or comments on it, and then continue it the following week. I’m not here to respond every time when some celebrity makes a swipe at stuttering or it’s portrayed negatively in the media. Those things shall pass. I also know that stuttering is very, very personal. This approach allows people to engage on their own terms.

11. Why are you posting about things that happened to you years and years ago?

Even if they happened to me years and years ago, they could be happening to someone today.

12. Where does the inspiration come from for these posts?

Aside from past experience, I read a lot of articles online that usually inspire me to post. I might wonder out loud about what a certain job would be like, or how I’d deal with a specific situation. I’ve noticed over the years as someone who stutters I spend a lot of time running through conversations in my mind — what might be said, when it could be said, how it will be uttered. Mostly of course this is to chart a course so I can safely navigate through by avoiding words. Or talking. Not always the best approach, of course. And while I’ve gone through a lot myself, I hope that by reaching out I can see and talk about what others deal with on a daily basis.

13. What’s your commenting policy?

If it doesn’t add value to the conversation, it gets deleted. Be nice.

Stuttering FAQs:

The objective of these FAQs is to gather a bunch of frequently asked questions on stuttering — and provide answers through a variety of sources. There is a lot out there, and it’s worth a read.

For now it’s a work in progress. Here are some of the questions. Follow the links for more information…

What is stuttering?

Stuttering is a communication disorder in which the flow of speech is broken by repetitions (li-li-like this), prolongations (lllllike this), or abnormal stoppages (no sound) of sounds and syllables.

Is there a cure?

The short answer is, “no.” From the link: One must be cautious when consulting websites about stuttering treatment. The solutions found online are sometimes supported, to some degree, by science, though more often, not. However, none can offer reliable information about long-term effects of the techniques and products they recommend. Some can be expensive. Many make promises that are unrealistic and misleading. Several websites misrepresent the methods used by SLPs (e.g. medication).

What are the treatments available?

Although there is currently no cure for stuttering, there are a variety of treatments available. The nature of the treatment will differ, based upon a person’s age, communication goals, and other factors. If you or your child stutters, it is important to work with a speech-language pathologist to determine the best treatment options.

What research is out there?

There’s a lot out there, and I need to see if there’s a nice summary anywhere.

What does a Speech Language Pathologist (SLP) do?

What are their qualifications and certifications?

Where should I go for help if I’m … a child … a teenager … an adult … a parent.

About

So, about me then. My name is Rehan Nasir, and I’m 40, an American engineer working in Lancaster, PA, USA. I have been stuttering since I was 7. I’m divorced with three kids under 13. Before moving back home to Lancaster, we lived in Indianapolis for two years. Before Indianapolis, we spent five years in Saudi Arabia. Before that, we lived in Omaha, Indianapolis, Pittsburgh and Philadelphia. I grew up in Pennsylvania and have a degree in mechanical engineering from the University of Pittsburgh.

As for stuttering treatments and therapies, there has been little done. From elementary to high school, I saw speech therapists that were provided by the school. The first one who I saw in elementary and junior high didn’t make much of a difference. I remember just having casual conversations (and not stuttering) and then having her tell me words and sounds to repeat. I do remember feeling very comfortable during those one-on-ones. And in hindsight, maybe that’s why I didn’t stutter as much.

During high school, I had a different therapist who suggested some improvements to my breathing. She described it as a balloon — and then slowly let the air out to say words. This is a technique that I try to use every time I open my mouth. Before ordering food, before saying hello on the phone, and before talking with friends and family.

After college at Pitt I was able to get on the Pagoclone trials. I did that for about a year. I personally noticed some improvement, but can’t honestly remember if I could have been on a placebo or not. But I remember feeling more calm before speaking. I had a stressful job at the time, so I figured it must have been doing something. We moved toward the end of the trial and didn’t continue after that. While it’s not a cure, it certainly helped a little. Since then I’ve not tried any more drugs for my stuttering. I hear that anti-depressants may help, but haven’t dug into it further.

My objective for this site is to have a conversation about stuttering on a regular basis. It’s taken me this long to get online with this because I’m a closet stutterer — that is, I don’t want people to know that I stutter. But enough is enough. Time to get on with helping people and making someone else’s journey less painful.

I tried at first to post every day. That sort of worked, but then got to be too much with family, work and kids. I wanted to make sure the quality of the content remained high. So now I’m down to maybe once or twice a week. I have, however, written over a hundred thousand words on stuttering through this blog. Now it’s 2020, and I’m focusing on it again. I want to keep the conversations going.

I went to my first NSA Conference in Washington DC. If you stutter and haven’t been, you absolutely must go. I can’t speak of it highly enough. I have since gone two more times — to Baltimore (when it was supposed to be in Chicago) and then in Atlanta.

You can reach me at rehan.nasir at gmail dot com.

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