About the author: Anita Scharis Blom, born and raised in the Netherlands, is living in Sweden. She works as an operation manager for the Workers’ Educational Association. She is chairperson of the local stuttering chapter, international contact and former chairperson of the Swedish stuttering association, vice chair of the European League of Stuttering Associations, and member of the advisory board for the International Stuttering Association. She is a national and international speaker on stuttering and has her own stuttering consultant company. She is also a leader of national and international children and youth camps. She has stuttered since she was 9 and had a troublesome youth, now inspiring people who stutter of all ages, they can make a difference.” Her device is “S-s-sure I s-s-stutter. What are you good at?”scatsis@hotmail.com scatsis@gmail.com

The movie with the same name was produced in three different parts. The first movie was quite surreal. Part two was just as surreal, but we now recognize the style and the characters. In part three we felt we had been there, done that, and just enjoyed the ride.

My life’s part one is called: Stuttering. It’s about my stuttering journey, from being a talkative and happy child until the age of nine, to a girl with a heavy stutter and a truckload of difficulties coming with it. No acceptance at home, no understanding from the people around me, no future to look forward to. Bullying, sexual and mental abuse, you name it, all connected to my stutter. I learned that what I did was wrong, I was faking, I was an idiot, I should not study, there were no jobs available for me and my life was over. Me, the stutterer, the outcast, the weirdo, the fish. Me, the outgoing girl, now withdrew from all the fun things in life and was hiding inside my home, inside myself, keeping all my pain and struggle inside myself. There were no answers, no treatment and I felt so alone. I gave up on life itself, but (luckily) I failed also there.

But suddenly things changed: I found the stuttering community at the age of 27. By working on myself, with the support of my newfound friends, I could now go back to my past, face and deal with my pain, and go back to the future. I again became the person I was as a little child: happy, outgoing, although this time with a stutter. I not only learned to deal with a life with a stutter, I did something with my experiences. I became active on the local, national, European and International boards. I travelled the world, THANKS TO my stutter, talking about stuttering. Me, who was told not to learn any languages, as I wouldn’t go anywhere anyway. I talk, to children, teachers, politicians and to the person next to me on the bus. I talk to the radio, tv, newspapers and magazines and am all over the social media and internet, always talking about stuttering. My biggest goal in life is to pass it forward, to give children and young people who stutter a voice and inspire them to not let anyone shut them up anymore. (If you’re interested to read more about my stuttering journey, please check out my previous online conference papers.)

My life’s part two is called: ME. When I gave birth to my lovely daughter, my pain started, growing steadily as years went by. I changed, from being a happy, wild and crazy women, with so many jobs and projects people got tired even hearing what I do, into a person who says No. No to all the things I used to say yes to, before the question was even finished, as eager as I was to jump on a new band wagon. For 18 years I tried to hide my pain from the outside world, pretending everything was ok. The only people who knew were my closest family members and the medical world, just to hear there was no treatment. I didn’t know who to talk to, how to explain, so I shut up. And because of my silence, I got no acceptance, no understanding, and lost faith in the future. I was faking, lazy, boring. And felt so alone.

But suddenly things changed: I finally got accepted to a special clinic. I learned that the reasons for my pain were many and they all had a name, names I already read about, so I knew what was in store for me. But imagine my surprise when I received a diagnosis of something I did not know existed? ME is an acronym for something I can barely pronounce, there is hardly any treatment, there is almost no research on it, it is surrounded by many myths and misconceptions, and I had never read or heard of it, even less met anyone who has this condition.

Hey, I have been on this journey before!!! It’s the same “movie” all over again, but with a different theme! Once again I’m finding myself looking for information, learning about how tough life can be, but also learning about how people deal with it in order to live a life as normal as possible. What I feel is real. It has a name. Again I face people who believe it’s “just a fashion thing that I should just stop doing that ” and of course they know exactly how to do that… Again I find myself choosing whether I should try to explain or to simply move on. I am no longer treading water, but can, again, move forward with the new insight and knowledge. Once again I’m searching for associations and expertise and once again I stand up and start talking about it, which leads to personal encounters with people who have the same condition and people who haven’t “come out” yet.

The difference between part one and part two of my life’s movie is that this time I quickly found what I was looking for, thanks to the internet. From self-help groups to Facebook, from personal stories to research, or lack thereof … (And again, I am asked to become a member of the association and want to be on the board, but alas, as my heart and time is devoted to the stuttering community . J) I am still at a state where I’m thrown between hope and despair , recognition and denial , but as I’ve already gone the same way thirty years ago , this time it only took a month before I started talking about it, with friends and family , with my boss and my colleagues. They still don’t understand it, but they now know there are things that are hard for me and that I need adjustments and their acceptance when I don’t live my life like they live theirs. What if it had gone so smoothly for me and many others in terms of stuttering?  I would not have found the self-help movement, treatment , friendship and understanding, or found the guts to talk about it to help and get rid of all the myths and shake off the shame stamp. Our symptoms are real. We didn’t choose this. It’s not “between our ears”, but a neurological problem.  Our struggle is severe, but that turns us into fighters. We face the fears and hurdles and do it anyway. Away with the shame and forward with pride!

So why is this story about something completely different from stuttering ? Is it really that different?  Both are surrounded by myths, shame and silence. It is difficult to get the help and understanding from the outside world, it’s hard to find proper treatment and research, but there is a large network of both patients and therapists. And best of all, my life is enriched with new, powerful and positive friends. I also learned that my stuttering journey is not my own, nor just related to stuttering. There are many people with different conditions, making the same journey. So if we learn from each other, unite and together raise our voices to claim our place in society, we can make a difference. One butterfly hardly moves the air. A world full of butterflies can create a hurricane! I am happy I went through part one, as otherwise, I wouldn’t have been ready for part two.  Now I know that even these new challenges will enrich my life and as with stuttering, make me stronger and more determined . I am now looking forward to part three. The sequel.