stammerheadshark * blog about living with an acquired neurogenic stammer

Living well despite…

Posted on: July 5, 2011

It occured to me that I hadn’t updated my blog with what life has thrown at me over the past year or so as I stopped writing it when I moved back home and life became a lot bleaker. I really thought that nobody would want to read anything so depressing, so I plodded on. Turns out that I’d forgotten how therapeutic it can be to write all the chaos out of your head.

This afternoon I spent writing up my experiences of a form of therapy that really has helped me come to terms with my speech as requested by the therapist for her to use as a case study, and I thought it was appropriate to share it here too.

So if you’re interested in what happened next to stammerheadshark, read on:

I was referred to see a clinical psychologist as part of a dual-pronged approach with the speech therapy I was undergoing in December 2010 to see whether it could offer a resolution to the neurogenic stammer I’d developed after accidentally hitting my head in February 2009.

Matters had been somewhat complicated by the fact that not only had it been discovered that I had a brain tumour requiring removal in the meantime, but I’d also been made redundant from my job in Southport.

This meant that the issue of managing the acquired stammer had become clouded by depression surrounding the lengthy period of time I seemed to be taking to recover from surgery (It had been estimated that 6-8 weeks after the operation I would be fit to return to work, but in reality after various complications [I experienced periods of muteness, my walking had deteriorated to that of a toddler’s, my stamina was severely affected, and I was suffering chronic head pain] it actually took 9 months), and my concerns that I would appear unemployable as a result of my speech difficulties and the recent surgery.

My confidence had plummeted as a result, and being unable to return to work as soon as I would have liked had very much affected my self-worth, the possibility of being able to move on with our lives whilst I was out of employment, and the reality of needing our own space as we had had to move back in with my foster-family (we had moved back from Leicester after being advised that I needed to be treated by specialists at the Walton Centre once the neurologist and speech therapist treating me had reached dead-ends in their treatments but consequently my partner and I had struggled to find work as the recession was just taking effect on businesses) which although was incredibly kind of them, meant that we were living in a house of 7 adults.

The psychologist was very focused from the outset with her programme of treatment that what had happened in the past was unchangeable, and that we ought to concentrate on what I could do to change my circumstances in order to “live well” despite the speech impediment and recent difficulties, as it seemed to be the case that speech therapy was unlikely to have any effect and I needed to come to terms with it.

I’d hate to sound dramatic, but honestly it felt to me that by accepting my speech as it is now meant that I was abandoning who I really was. I’d made a point of explaining that this wasn’t what I really sounded like when introducing myself to new people. I needed people to know that the stammer wasn’t who I was; I didn’t want anybody to define me by it because I have to believe I am so much more than that. I am not my disability, but at the time, I was refusing to accept it was even a part of me. It was removed from me, just something that had accidentally happened, and I desperately needed to believe that I wouldn’t always have this speech.

To begin with, I felt that by going down the path of “living well despite…” meant that I was cheating myself out of what I considered being well again, and I must admit that I didn’t fully commit myself to the therapy during the first session as I tried to assert who I had been (and now, who I realise I still am) and the things that I had done and was proud of before I acquired the stammer.

After the session, I had reluctantly agreed to return to see Becky as although I felt I was giving up on myself to accept my new speech, I also felt that I was cheating myself out of a chance to treat the stammer if it turned out to be psychosomatic. A week on I unexpectedly received a letter through the post from her, and honestly I cried.

After all the reams of NHS appointments and letters bearing worrying news requesting I returned to various clinics that I had received for months, a letter arrived that told me how brave I must have been, that it had been recognised that I was more of a person than I appeared superficially while I was recovering, that there was still hope and that someone wasn’t giving up on me. I truly felt overwhelmed by all of this.

I felt valued after feeling like nothing more than a patient number for months, and I had faith that I might be able to change my life again for the better. Not that someone was going to do this for me, but that I could be empowered to do this for myself. I was enthusiastic for the first time in over 18 months. That probably doesn’t sound like a big deal; but for someone who had been hiding themselves away in their room because they not only didn’t have the physical energy to deal with anything but also felt deeply ashamed of the way they now walked and talked so didn’t want to do anything in public, it was.

I had about 4 one hour-long sessions in total with Becky from December 2010 to May 2011, which doesn’t sound like much to be honest, and nor did they feel particularly intensive at the time; but what it did do was plant seeds of ways to move forward and as I’d ascertained from her initial letter it really was in my hands to make the changes I needed to move on with my life.

At the end of the second session, Becky “invited me” (I loved this phraseology – it felt friendly, undictatorial and encouraging) to look on the do-it.org.uk website for volunteering opportunities relating to my previous work experience, as it would help build my confidence and stamina again whilst demonstrating to a potential employer that I was ready to reintegrate myself in the workplace and wasn’t as risky a prospect as I might have intitially appeared.

As a result, I started working with a charity called SUAG who provide support to the spinally injured throughout the North West as they required a new committee member with experience in marketing. The volunteering benefitted both them and myself, and I’ve been able to continue working with them since starting my new job. Without a doubt, the organisation that employed me wouldn’t have done so had I not undertaken the voluntary work; as they needed reassurance that I could maintain regular hours and focus after such major surgery.

For the past few months now people have mentioned that my stammer is easier for them to understand and that there are fewer repetitions in my speech, from their perspective they believe that this is a sign of my normal speech returning. I’m disappointed for their sake to say that that’s not the case, but rather that I’ve stopped fighting the stammer. By not trying to stop myself from stammering, it’s producing clearer speech and less repeated syllables; that’s fine by me though.

It’s taken me nearly 2 and 1/2 years to get to the point where I have just accepted that I can’t change how I speak so I shouldn’t stress myself out by constantly trying to do so. I know that it doesn’t sound like rocket science; but I just got to the point where it was exhausting trying to control my speech and I realised that it was far more important that what I wanted to say was heard, rather than the way I was saying it.

What truly helped was the informal, chatty and reflective nature of the sessions; little things like the way she introduced herself as “Becky” rather than insisting on formalities (I’d assumed I’d be calling her Dr Simm) which made me feel as though I was an equal in the process, that she and I were working as a team rather than under her direction as a healthcare professional.

I appreciated the fact that both she and my contact at the Job Centre knew of each other professionally, and that she was keeping my speech therapist and GP informed with my progress; it made the process feel much more holistic than I’d imagined it could be.

The letters that she sent after each appointment helped me retain focus for what I’d agreed my next few steps should be, helped me to reassess how far I had come, and meant that when I was feeling low I had something to refer to and remind myself that I had value as a person. A simple thing really, just a letter, but to the recipient it’s so much more.

Also, I’m terrible for pounding on with things and never reflecting on what I’ve done, how it made me feel, what could have been done differently, and how I can apply that experience to other things in my life to make it easier; the sessions gave me the head-space to do this, and although it sounds odd to say it, it actually made me reflect.

As I mentioned earlier, this is something I rarely do willingly as I’d rather spend the time getting other things done and I’d always felt that reflecting was a bit “fluffy” for me. I clearly just hadn’t been doing it in the right way, because what I did learn was that it was incredibly useful as a coping mechanism; instead of floundering at problems or carrying on inspite of them, I started to actively tackle problems that I’d previously felt were outside of my control. It made me think and act differently.

I no longer see Becky or my speech therapist as I’ve come to the “end of the road” with both of them. This time it’s different though; previously I had stopped seeing various therapists because they had run out of ideas how to treat me and I felt abandoned. In both cases this time it’s a mutual and natural conclusion to therapy; both Becky and my speech therapist feel satisfied that they’ve done all they can for me, but I also feel enabled to manage living with my speech as it is now. I am “living well despite…” as she would put it.

And I truly am living well; for all the heartache and difficulty that I’ve faced recently, we’re in a better place now than we were before my accident and I acquired the stammer or the tumour was dicovered. We’re living in a lovely apartment on the sea front, I have a job which I love that challenges me intellectually and working in a team with lovely people, I’m on a better salary pro-rata than I was before my accident (which I honestly thought would never happen as most people with severe stammers do menial jobs that I’ve come into contact through networking with others), we’re living back amongst our friends and family instead of living on the other side of the country and travelling back each weekend, and I’m happy – genuinely happy (even with my silly stammery speech) – which I hadn’t been for a long time.

I’m an incredibly lucky girl. There’s a quote from Winston Churchill that I came across the other day that I thought put my experience very succinctly: “If you’re going through hell, keep going.

It’s true; it’s taken a long time to get here but I don’t mind the journey that I’ve been on – it’s made me a better person. I’m more tolerant, patient and understanding as a result of all of this. I’m so grateful to the people who’ve supported me and made a big difference to my outlook. Thank you all.

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4 Responses to "Living well despite…"

wow Jo, really inspired by your honesty and your perseverance!! Thanks for posting luv Claire xx

In 2008 when I was 22 I suffered a major stroke Leaving. Me with speech problems. And loads of other problems. I can totally identify with you and all I can say is I’m 3 years down the road and it does get better in sone ways better before the stroke.

I hate living so far away from you these days but I’m so glad your happy! This made me cry because I know how much you have gone through and how strong you have been! I’m so happy for you hunny!

Love you lots!

You’re a real inspiration and it’s great to hear from you again after all this time.

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