Make Room For The Stuttering

Last night, I was talking with my significant other about some of the stuttering stuff I have been up to lately. He rarely asks – he doesn’t really get it, nor care for that matter. What he does care about is when I am not around. He gets very resentful and wants to know when is enough, enough. He actually said it that way, “when is enough enough?’

He commented that I went to conferences last year – so aren’t I “over it” by now? I tried to explain why its so important to me. I want to keep connected with people who stutter and talk about it, and contribute in some way so that people don’t go through what I did when I was so ashamed I thought I had to keep my stuttering hidden. He looked at me with such a blank look. He really thinks I have had enough and should be able to go back to the way I was.

I tried another approach. I reminded him that my mother is an alcoholic and has been sober for 25 years. She still goes to meetings 3 or 4 times a week and attends special meetings and conferences every year. It’s the connection and fellowship with other people that is the important link, what keeps a person wanting to be so involved in self-help and support.

I still don’t think he gets it. He says its a waste of time, and that I am neglecting him. I have asked him numerous times if he wants to come to a meeting and see what I do, or meet some of my friends who stutter. About this, to his credit, he was honest. He said he has a hard enough time when one of my stuttering friends calls here. He has a hard time listening on the phone. He says we talk too slow and it takes too long on the phone. He can’t imagine hanging out with stutterers in person.

It was about this time in the conversation that I was starting to get a little stressed, as I am oft to do when we are disagreeing about things that are important to me. When stress goes up, I tend to stutter more than usual. I found myself saying, “WH–wh-whats the p-p-point of trying to communi-ca-ca-cate with you anyway? You always wa–wa-want the llllllast word”. And then he said, “N0, no, no I don’t”, and we both just burst out laughing.

He wasn’t stuttering, he was mad and trying to assert himself, and I found it so funny, I dissolved into a fit of giggles. He had no choice but to join me laughing, as it was contagious.

Enough is never enough.

Her name will be Rainn. I can remember so many times wishing my stuttering would go away. It would not cooperate. Even when I tried to bargain with it, like in the old nursery rhyme. Remember how it went: “Rain, Rain go away – come back again another day!”

My stuttering is with me all the time, sometimes as an extra, sometimes in the starring role. Having a relationship with stuttering means being comfortable with her whenever she arrives. Sometimes I have conversations with stuttering, telling her things like: “OK, if you’re sticking around today, I will introduce you” or “I am talking about you today, so you better show up.”

So it goes in a relationship. Sometimes she is present right away, and it seems right to introduce her right away. I might say something like, “I stutter, and I am OK with it. I hope you are too”. Sometimes I have talked about stuttering at a workshop, and she doesn’t show up. Then I feel foolish, lacking credibility. After all, if you are going to disclose that you stutter, it helps if stuttering makes an appearance.

This is the stuff that covert stuttering is all about. Situational stuttering that is not always evident. Unconsciously switching words, which I also try to talk talk about, again something that I never did. I would just try to go with the flow and pass as “fluent”. (Oh, how I am getting to hate that word).

Sometimes, if I am trying to teach kids about stuttering, I might use voluntary stuttering, which means that I might stutter on a word or phrase on purpose. This involves a certain amount of risk, because my voluntary stuttering often turns into real stuttering. That used to bother me, but it doesn’t anymore. It is what it is.

It takes at least two to have a relationship. I hardly ever ask or wish for Rainn to go away anymore. She is part of me, part of what makes me real, unique and authentic. And being authentic opens the door for many more deeply satisfying relationships.

I have not decided on a name yet for my stuttering, but I am mulling over several. It has to be just right, because I really am having a relationship with my stuttering. Never thought that would happen. We have relationships with our partners, children, parents, so why not our stuttering? We spend an awful lot of time together.

But I want to share today about a really positive experience I had earlier in the week. I visited one of the special needs classes in my school this week, to spend some time with these students. They are not on my caseload, but they are students in the building and often get forgotten about. Sort of like, out of sight, out of mind. People walk by the classroom and just keep on going, not taking the time to stop in, wave or smile, even when these kids initiate it. I hate that when it comes to any differences, stuttering included, so I make it my business to stop by whenever I can.

We had decided to do a small group discussion on teasing and bullying, a concept these kids know well. As someone who stutters, I have shared with them that I used to be teased and made fun of when I was a kid, and still do sometimes as an adult. So I decided to read them the new book
“Stuttering Stan Takes a Stand”, by Artie Knapp. The book tells the tale of Stanley the squirrel and how his stuttering affects him and the people around him. It also touches on the universal themes of self-esteem, kindness and friendship. The story has an unlikely heroine, which tickled the kids.

I read the pages slowly and showed the pictures, leaving time for the kids to comment on the squirrels and other animal friends. I stuttered naturally and had some voluntary stuttering turn real. (Usually, that freaks me out a little!) The kids didn’t give a hoot that I was stuttering and I was very relaxed. They paid rapt attention and truly delighted in having a visitor read a good story to them. The teacher and assistant really enjoyed it too.

After finishing the story, everyone shared what they liked best about it. The resounding answers were “even bullies need friends” and “its sad when we get teased”. Out of the mouths of babes, huh? I still feel the warm feeling I had as I shared that afternoon with these special kids.

So it seems I have an insatiable appetite for all things stuttering. I can’t help it. I really enjoy hearing about other people’s experiences. Even men. I don’t say that to be sexist in any way. But it seems men relate to their stuttering in a different way than women. Okay, this woman, to be exact. Let me explain.

I attend a self-help support group every Monday night. I enjoy it. Hanging out with people who stutter is cool. I happen to be the only woman in the group right now, and sometimes I am out-numbered 15 to 1. (Some of the men have been asking me if I know where all the women are, as I have not always been the only one. They think they have done something to drive the other women away). I can handle myself just fine with all of these men, thank you very much.

I try to relate to my stuttering as if it is an entity deserving of a relationship. Now maybe this is a bit much, but its where I happen to be right now on my journey. The guys, on the other hand, (not all, but most) don’t seem to relate to even being on a journey. Some instead express frustration that they are not fluent enough or their targets or something else are not working.

I hate targets. I can’t seem to fit them into my life. I understand the usefulness of having a strategy to use when I feel really stuck, but I rarely find myself thinking about taking a full breath or initiating light contact. It seems my mind is always racing far too fast about something else to take the time to think about targets, let alone use them.

So, my inquiring mind wants to know – do women who stutter relate to their stuttering differently than men who stutter? I think so. I definitely do. There is nothing wrong with wanting to have a relationship with my stuttering. I think I’ll even give my stuttering a name. My inquiring mind will have to give it a lot of thought, however. It can’t just be any name. It has to fit me, and my stuttering!

I have the tendency to be very intense. I have always been like that. Its not uncommon for people to say to me, “lighten up”, or “don’t take things so seriously”. I used to get somewhat annoyed when people would say that, because it felt negative and that they were criticizing me.

So imagine my surprise when I realize that I am telling myself to do just that every now and then. Its not being too hard on myself or self-contempt. It’s about remembering to be kind to myself, because my “self” is the only “self” I’ve got.

I have read some great books on mindfulness and being present with my thoughts. When I am able to do that, and realize that I am being too hard on myself, I do find myself relaxing and being more comfortable in my skin.

For so long, stuttering had a powerful grip on me. I let it dictate when I would speak, how I would speak, what things I would participate in and what things I would avoid. I thought about stuttering a lot, and usually negatively. This mindset had such power.

I have learned that this power can be channeled into something positive. Now that I don’t beat myself up so much, and have allowed stuttering to be just a small part of my being, my mind is free to explore other things. More important things, like fully engaging with the world and being present with another person (and not secretly rehearsing what I am going to say). And experiencing joy from little things – talking with friends, laughing, getting a pedicure.

I stutter sometimes and its okay. It doesn’t detract from me as a person. As a matter of fact, it adds a unique facet to me that not too many other people have!

I have been thinking of the whole concept of abandonment a lot. I have experienced some in my life. I recently tried to talk about what that means for me, and my feelings connected to abandonment. I found it was easier to write it.

I have always been afraid that whenever I get close to someone and bare my soul with them they will leave, so I have been very guarded in my relationships.

I had the courage to share with J (mentor’s name) that I was afraid he was going to abandon me. I have shared with him more than I have with anyone else, even myself. And I began to worry that he would slip out of my life. He assured me he still has space for me.

I felt abandoned by my father long ago. He was never there for me in the way I needed and wanted. Our estrangement lingers. After he survived a brain tumor, I thought some reconciliation was near, but it has not happened. I thought I was a terrible person for not being able to forgive him. I don’t have to forgive. There are no rules when it comes to feelings.

I have felt abandoned by my partner. He does not know the real me, the thinking, feeling me. He wants me to be the submissive caregiver, the same role I played in my childhood home. I am fighting to free myself. When he tugs me backwards, and I fall for it, I feel abandoned.

I have also been abandoned by my mother. She was not there to protect me as a child. When she finally found sobriety, it was too late. I was gone.

And strangely, I felt abandoned to her recovery. As she freed herself from alcohol’s grip, she plunged into her sobriety and new life, and I felt she made no room for me. She poured herself into helping other alcoholics. She attends meetings, sponsors other addicts, hosts conventions, runs groups, and drives all over to bring hope to those caught up in the alcohol fueled world.

Every time I try to talk with her about anything I consider important, she changes the subject. I respect that. Recovery has changed her life. But growing up in an alcoholic home changed my life too, and we have never really talked about it. She tells her story to strangers but not to me.

I have sometimes also felt abandoned when stuttering. When someone made fun of me, or looked away, or tried finishing my sentences for me, but didn’t say what I was going to say. That made me feel that I wasn’t being appreciated or heard for who I was. Abandoned by a world in too much of a hurry to listen.

I am certain my mother carries around a lot of guilt. That she has told me. My sister has told me that my mother has always felt guilty for not doing more for me about the stuttering. That she should have stood up to my father and insisted that I get speech therapy.

I hope that by acknowledging my feelings of abandonment I can finally put some of this to rest and find my balance.

I have often found myself thinking about the things that were left unsaid. Said to me, said by me, said to others. What a waste when we don’t say what we want.

Sometimes it’s because of stuttering or sometimes because we feel intimidated. Both of these have happened to me.

There was not a lot of emotion verbally expressed in my household when I was growing up. None of us knew how to do it. We were shell-shocked by other things going on. But there was a lot of emotion there, right under the surface. It just was never said.

I bet a lot of people can relate to some of this.

Here is my list of things I wish had been said at some point, in no particular order.

I wish my dad had told me he was proud of me, just once when I was growing up. That would have meant so much.

I wish a teacher had told me that stuttering was no big deal, that we are all unique.

I wish that someone else would have told me that they stuttered too. It would have been great to meet someone else who stuttered, so I didn’t feel so alone.

I wish someone would have stood up for me when I was being teased about how I talked.

I wish I could have said how I felt about never having any friends over to our house.

I wish I could have said how I hated feeling different.

I wished I had said how angry I felt when I didn’t say what I really wanted because I was afraid I would stutter and people would laugh.

I wish I had told the clerk who mimicked me how much that really hurt.

I wish I had told my college professor that I was stuttering when I gave my final oral presentation. It would have made it so much easier and I wouldn’t have agonized over it the way I did then. I still think about that.

I wish I could have said how painful it was growing up in such a chaotic place.

I wish I could have told someone about the guilt I have been carrying around and how heavy it has felt.

I wish I could have talked about being ashamed of what went on in my family.

I wish my parents had told us that they loved us. I never remember it being said.

Yesterday I ran into someone I used to work with quite a while ago. After catching up, she mentioned that she had seen me on a television program about stuttering that I did last year. (The PBS station replays it frequently. Sometimes at midnight. Other people have mentioned that they have seen it when unable to sleep and randomly flipping channels.) She seemed reluctant to say the word stuttering -she twice referred to it as “the speech thing”. She went on to say that she never knew, that I did a good job covering it up.

I have another friend who also seems uncomfortable saying the word stuttering. When we talk and my stuttering comes up (which it rarely does), he refers to it as a communication issue.

One of my sisters also is very uncomfortable with talking about stuttering, and the once or twice we have dared to go there, she has used the phrase “how you talk”. She has shared with me that her daughter has done very well in recent speech therapy, but she pointed out that is is not related to “how you talk”.

So this makes me wonder – are people in my world uncomfortable with the word stuttering? Even though I think I am very open, and often talk about stuttering. I know growing up, it was totally taboo. The fact that I stuttered was never mentioned, it almost seemed like a bad word. Or maybe people think they are “sparing” me in some way by not calling a spade a spade. Are they trying to be polite? Respectful? Politically correct?

I used to be extremely uncomfortable with stuttering, obviously. That’s why I hid it for so long. And used so many tricks or avoided. Could it be that I am still giving off some kind of vibe? That people feel the need to use some form of euphemism? I don’t think I do, but maybe I need to check myself. And its certainly not with everyone. Maybe just certain people? Hmmmmm.

On my resume, I note the NSA – a National Speech Advocacy organization. Whats that all about? It looks like I don’t want to use the word stuttering myself on a professional document. Is that true?

I am not going to be too hard on myself. I am just reflecting on some things that maybe need to be reflected on.

Writing helps me to be wonderfully reflective, which is a good thing. When we reflect and have the courage to share, we never know who we might impact, and that’s always a good thing.

So today, I find myself reflecting on why I have such a hard time accepting compliments and enjoying that it just FEELS GOOD when someone says something nice. I have been working on it, trying to allow myself to let the good things in and experience that pleasant rush. But its not easy for me.

I seem to have a problem practicing what I preach. Not a unique problem – we all fail to walk the walk sometimes. But it is far easier for me to give rather than take, encourage others to shake things off, and remind people to tell themselves that they are good and special.

But I rarely do that for myself. My wise friend tells me that its common for caregivers to almost never do for themselves, out of habit, and maybe even guilt. But it really is important, and for those of you reading, I encourage you to pat yourself on the back once in a while. Give yourself a high-five, go ahead and do a fist-pump. If I was a doctor, I would be saying, “Physician, heal thyself”.

So, what brought on today’s reflection? This afternoon, someone asked my advice. She was having a tough day, and admitted that she often feels that she is not good enough, and wanted to know how I talked myself out of moments like that. I reminded her of all the good things she does and of the difference she makes every day. We talked about how unproductive negative self-talk is, and how we need to replace it with positive self talk. Easier said than done!

But then she simply said, “I admire you. You are so talented. You’re such a blessing.” Did I say thank you? Noooooo. I immediately said, “Oh, I’m not that talented”. Which opened the door for her to say, “yeah you are”, and instead of bantering it back again, I just smiled and nodded.

It feels funny when someone compliments me, because for so long I didn’t think I deserved it. That emotional baggage – it can wreak havoc. I talked about that recently at a stuttering workshop that I helped present. That the stuff below the iceberg is the really tough stuff.

But we can melt some of the ice by allowing the good stuff in and feel the warmth that comes with it.

Today I spoke to a group of college students majoring in education and human services. The purpose of the forum was to provide these new job seekers some tips for career planning in these turbulent economic times.

There were two panels. My group was to address unique career paths and how we might wind up doing things we never imagined we would when we first started out, and find our dream job in the process. The other panel addressed balancing personal and professional priorities, in an increasingly “do more with less world”.

I was pleased to have been asked to be part of this function. I have a human service background, yet work in education, and could share how my career path zigged and zagged a bit, but still left me with a very satisfying career. I also could share about being resilient and having transferable skills, having had the dubious distinction of being fired and managing to land on my feet. People need to hear those success stories today. I am a sucess story.

Before we got started, the college’s two career administrators gave an overview of job search basics: resume writing, interview preparation, making a good impression, all that fun stuff.

The College Career Counselor then told the audience of about 75 that during interviews, it is really important to watch how many times you say “ah” and “uhm”, because you don’t want it to look like your stuttering during interviews.

Well, I am pretty sure my face turned red, my eyes widened, and I did one of those double takes. My brain was saying,”did she really say that?” Yes she had, and I am certain it was totally innocent and she meant no harm. She had no idea that someone who stutters was in the room, let alone on the panel that would be speaking next. We had never met.

My mind toyed with the idea of saying I stutter when I introduced myself and began my rehearsed spiel. But this was one of those times where I didn’t want stuttering to be the focus. That’s not why I was there. My mind was screaming – “correct her, say something, let these impressionable young people know that people can stutter and still be very successful and be invited to speak on these panels”. But I didn’t say anything – I let it go, and chose to be gracious.

I stewed inwardly for bit. I then decided to just let it go. There are plenty of people who will continue to make stupid comments about stuttering. There will be plenty of opportunities for me to educate and raise awareness. Its okay for me to choose the moments when I want to be an advocate and teach. Its not okay to beat myself up just because I didn’t say anything. It doesn’t make me any less of a stuttering advocate – it’s just a reminder that there is lots to be done. And I don’t have to do it all myself.

I know some people who are so covert that no one knows they stutter. They don’t tell people in their world that they attend support group or are associated in any way with people who stutter. One person I know tells people she is taking a class, rather than admit that she goes to a self-help group. It is too much of a stigma for her.

That was me for a long time, and still is sometimes. That is hard for me to admit, but sometimes I am not open with my stuttering. And I find myself really kicking myself when I do that, because I feel like a hypocrite.

When I first discovered the self-help stuttering community, I felt caught between two worlds. I didn’t stutter enough sometimes, so I felt I didn’t connect with the really overt stutterers, and I stuttered too obviously sometimes to try and blow it off.

As much as I feel I have been open and honest with myself and others, there are times when I don’t disclose that I stutter. This happens most for me in the workplace. Communication is so inherent, and so taken for granted, that it is definitely noticed when you have a little blip on the radar. I think it is fear and shame that still keeps me from being honest about this part of me.

I still remember how horrifying it was to be fired from a long -term position because of stuttering. Part of me remains fearful that I could be hurt again by the large number of people who really don’t get stuttering. I know I can minimize this by being open and seizing those moments to educate and raise awareness, but sometimes the workplace is just not the right place to do that.

I remember recently at a work event – a strategic planning meeting – I said hello to an administrator. His last name begins with “L” – lets say Leland. It came out, “Good evening, Mr. Le-Leland”. He replied, “Oh, so now my name is Le-Leland”. Certainly not one of those heart-stopping moments, but he noticed and remarked about it. Enough to make me feel self-conscious and uncomfortable.

So, sometimes I feel I am leading two lives. One that is open and honest, authentic and real. And one that just can’t shake that feeling that the world at large still finds stuttering unacceptable. I know this leads back to my father’s early criticism and disapproval. I am an adult now. But those feelings still loom and are very real. When someone criticizes me, I feel like I did when I was 5 years old and my dad was screaming at me to shut up if I couldn’t speak right. I felt I had failed.

I really want my two worlds to become one, and find that balance. I am going to keep trying.

I was 10 or 11 years old that day, when I came around the corner and saw the fire truck down the street. Even from the corner, I had this sinking feeling that the fire truck was for my house. I couldn’t see which house it was in front of, but I just knew it was there for my house.

My first thought was to turn around and go back, get far, far away. I did not want to face anything bad. I was just a kid, and this was getting too much for me. My mom was an alcoholic and spent most of her time drinking and sleeping.

There were six of us kids, all a year apart, except the youngest. I had always felt I was the parent in some ways to the other kids, as mom was there but not “really there”, and dad spent a lot of time at work or somewhere else. When he was home, we wished he wasn’t.

I think my mom drank because of my dad, the way he treated her, and the way he thought of her as a non-person. When she was unable to tend him or the house, or us kids, that role fell on me, as the oldest. I did everything, and tried to keep a lid on the place. It was not easy, because nothing was ever predictable. I never felt anything was right. I sometimes felt like a non-person.

My legs did carry me down the street to my house that day, and sure enough, the firemen and trucks were there at my house. I started to cry before I even knew what had happened. My heart was pounding, and I was feeling choked, because I was also trying to stop myself from crying. I often had that choking feeling,like something was around my throat, always pushing. That is hard for me even to this day. It was like an unwritten rule in our house – we didn’t cry, we didn’t show emotion, we didn’t speak unless spoken to, and even then, it was a risk. We just did our best to hold on. Sometimes I prayed I would fall off.

My mom had fallen asleep with a lit cigarette. The cigarette dropped on to her blanket and started a fire. The bedroom was on fire, but she wasn’t hurt. No one was, physically.

I don’t know who called the firemen, but they were there, and the fire was out quickly. It didn’t spread much, and only the bedroom area was affected. Some of my sisters were standing out front, watching what was going on, with such sad looks. I don’t remember how they got there, or if we had been together, or was I supposed to be watching them that day.

Some of the neighbors were there too, looking and watching, and whispering. They had those looks on their faces. I had seen those looks before.

The firemen wouldn’t let us in the house for a while, until the smoke cleared. We were lucky. It could have been a lot worse. I remember finally seeing my mother. She was wrapped in a blanket, and looked sooty and stunned. She also had that all-too familiar, confused look, having passed out and woken too soon. She looked dazed, and afraid. It was the first time I remember seeing my mother actually look frightened.

My father came home at some point, and everything else was a blur. I do remember that he eventually had an addition built to the back of the house, and the bedroom was repaired and there was no physical evidence that this had ever happened. Except in my memory.

I think back to that day whenever I see a bright red fire truck from a distance. I am reminded of that scary walk down my block and the pounding heart of a little girl who was always choked up and afraid to cry. A little girl who grew up way too fast.

Today I talked with a teacher friend, who mentioned that working with special needs kids is such a great experience because it forces you to look outward, be aware of differences and develop empathy. She then looked at me and said, “you must have a lot of empathy for others because of your stuttering experience”.

I have heard that before – not about me – but in general. From stuff I’ve read on the Internet and heard at conferences. I think it is true. Because I have the experience of getting stuck and feeling different, I do think I have more patience and concern for others. I know what it is like to have someone roll their eyes, or look away, or laugh when my words come out stuttered, or not at all. I know what its like to have someone hang up on me over the phone, or be rude in some other way.

I remember once at a former job, some other staff and I were planning a party for students who had achieved a special achievement. We did these parties fairly regularly, as an incentive. I was responsible for organizing everything and putting in the food orders. The easiest, and by far the kids’ favorite, was pizza. One staff told me she was sick of pizza and could we have something else. I very calmly told her, “It’s not about you, it’s about the kids. They love pizza, so that’s what we will have”. I saw the “Aha moment” flash across her face, and I never heard her complain again.

It just takes some simple reminding every once in a while. Its not about us, its about the other person. That is what empathy is. Knowing what its like to be left out or ignored, not wanting someone else to experience the pain you have felt. Do people who don’t stutter ever have that “Aha moment” when they get what it is like to stutter?

You need to be a special person to work with special kids and adults. You need patience, care, concern and an appreciation of the other person. Its not so different when we’re talking about communicating with each other. The same things apply. Why don’t people get that?

Yesterday, someone said to me, “You are so passionate about stuttering and talking about it. What drives you?” That was really interesting, because it came out of the blue, as an observation from a non-stuttering friend. She said it seems like I could talk about stuttering to anyone who will listen.

This after she overheard someone mention that they had heard me speak a couple weeks ago at a stuttering workshop for speech therapists. (Which, by the way, was a very cool thing to do. There were 87 SLPs in the audience and they seemed hungry for real-life information on stuttering. There were 3 of us stutterers presenting, and you could have heard a pin drop. They were hanging on our every word.)

It’s not so bad to be driven about stuttering, is it? I guess I have reached a point where I feel I can and should try to educate people about stuttering. After so many years of being ashamed to talk about it, or even admit I stutter, now it seems that something has been unleashed inside of me. Like the vise that was around my throat is finally off and now that I am talking, nothing will stop me. Like the genie in the bottle when the cap is taken off after a thousand years of being held prisoner. I wouldn’t even want all three wishes granted by the genie, just one: to get the word out.

I always kept my stuttering a secret, and kept it only in my head. Once, I found a couple of old journals of mine and saw I made some fleeting references to stuttering, like “I didn’t stutter much today” and “wonder what they thought when I stuttered”. I kept those thoughts to myself.

Now I blog, post on stutteringchat and covert-S, and even craft speeches for Toastmasters about stuttering. So, is that passion? YES IT IS. I love to help someone understand what stuttering is and is not. I am an expert on my own stuttering and if sharing that with someone (or a lot of someones) can make a difference, then its a good thing to be passionate about.

If the non-stuttering community can better understand what its like to get stuck, even for just a few seconds, and feel like a genie in a bottle, and I can have something to do with that, then that’s what I wish for.