Tag Archives: Self-Knowledge

Me, My Stammer and I

If someone had said to me few years ago that I would one day write a blog about something I am extremely conscious of, I would have laughed out loud! But here I am and this means a big step for me.

As long as I can remember, I have always stammered. I remember when I was about 5 years old and I was struggling to ask for a toy from a boy in a classroom and he said with a puzzled look, why do you talk like this? Up until then I never really noticed my repetition of words, struggling to get the words out etc.. I went home and asked my mum and she said it’s because you are still learning to speak and I believed her for a very long time!

Fast forward many years and I am still “learning to speak”! I was bullied in school for my stammering and my parents had to come for many meetings with the school to talk about it. Having any speech therapy was never an option as my parents believed it would all go away if I gave it time. My family helped me immensely by showing their support and patience, but I grew up thinking stammering was something to hide and not talk about to the world.

Despite being good academically I could never enjoy school, but my good grades and the thrive to achieve more kept me going, I always wanted to act and take part in debates and speeches, but settled for singing instead. This gave me a chance to experience the fluency I dreamt of. I used to envy people who could say what comes in their mind without even thinking about it!

waves Over the years my stammering was like waves with high and low points, but I became very critical and unforgiving of it. I would go over and over my speech and keep telling myself that I was not trying enough to speak properly. Thinking about it now makes me feel sad at how I would be divided into two with one side trying hard to communicate and the other just being negative! I hid my stammering from everyone and would cough, pause or whatever known hideaways to cover my stammer when talking to my friends and family, even at work. I managed to work as a telephone operator in a Call Centre for four years, but the constant efforts to cover up my stammering often made me extremely tired and out of breath.

It was only few years ago that I decided to try speech therapy. That decision did not come instantly as I had often thought of it, but only found enough drive to do something about it then.

The first call I made to find out about NHS speech therapy was very daunting in its own way. I was invited very quickly to the first appointment with a therapist in Chippenham, Wiltshire where I lived at that time. I went to the first session thinking there would be a magic cure waiting for me, but was also very apologetic to the therapist for wasting her time! After a few sessions, it was obvious that we needed to address my psychological approach to stammering before the physical side.

I attended a few sessions there and learned to be as kind, gentle and friendly to myself as I am to others! I know this sounds strange, but I learnt to look at me from a distance and appreciate myself. I started to take each conversation as it happened rather than thinking the whole day was a failure if I had stammered a few times during that day. Just as I was beginning to learn the positive ways to understand my stammer, we had to move from Wiltshire to West Sussex.

This threw me out of my comfort zone and I went back to my old self! It took me many more months to find out about speech therapy in the new area. I was told that there would only be one or two sessions to attend in my area before this service moved to Horsham, West Sussex. Desperate to do something about my attitude and state of mind, I took the chance. To be honest those two or three sessions probably did little to improve anything but they were reassuring enough to make me feel I was on the right track.

Finally, the speech therapist in Horsham helped me to achieve more and explore further. My anxiety was more about causing discomfort to others, but I learnt how that might not be the case and that others are not even bothered by it! We went through the relaxing techniques as well as some breathing exercises to ease the tension around my neck and upper torso, which helped a lot. I had days when the therapy or techniques were helpful, but there were also many days when I felt lost, confused and went back to my usual self-blaming thoughts!

One of my tasks set by my therapist was letting my employer know about my stammering. It happened at the right time as I was going for a job interview for a role I was extremely excited about. I went for the interview thinking there was no way I would get this job after I mentioned my stammering – I guess old habits die hard! But I was a little shocked and somehow disappointed to see that as I mentioned stammering and my therapy, they thanked me for letting them know and just moved on! I was hoping for gasps at least, but not even a slight twinge! That proved even more that my stammering was not as much of a trouble to others as it was for me.

I got that job and am still working there 5 years on. Not even once has anybody mentioned that my stammering has caused them any trouble or has come in the way of my job. My confidence grew with the years and I found a relief in letting people know about my stammering. This also gave me a starting point to focus on learning new skills and making new friends rather than worrying about where I stammered or got lost for words.

As one of the three speech therapists I had once said, “there is no such thing as perfect speech! It’s all about how you get your point across.”  I still have days or moments when I find myself lost for words or feel out of control, but then I take a moment and think that as long as I am able to make the other person understand my point, it’s ok.

I decided to stop taking therapy back in July this year because I felt I had gained enough skills in order for me to find my own way to be a “happy stammerer”. This ability to be ok with stammering is something I never thought I would achieve.

As much as I appreciate all the hard work my NHS speech therapists have put in to help me achieve this state of mind, I feel this was only possible when I decided to take control of my stammering rather than being controlled by it.

Anyone out there who is wondering whether therapy is for them… or perhaps have had therapy, but did not find it much help, I would like to say it’s more like trying a hat… you will have to try a few to find the one that fits! And once you find it, it will not solve all your problems but it will give you enough lift to face life with your head high!


Amna

 

 

The Neuroscience of Stammering

Most of us will likely agree that the brain of a person who stammers works somewhat differently to the brain of someone who is fluent. What is not so clear, is how it is different. Earlier this year Dr Soo-Eun Chang at the University of Michigan spoke to Peter Reitzes from StutterTalk about her research on the causes of stammering. We used this opportunity to discuss the neuroscience of stammering at a recent Open Space session.

Open Spaces provide a forum for people who stammer to come together and share their experiences and views on stammering. At this particular session we chose to focus the discussion on some of the scientific developments being made in the field of stammering research and what we felt this meant for us and the wider stammering community.

neuroscience2Dr Chang’s research has discovered that neural connectivity is a critical factor in producing fluent speech. In her work with children, she has found that those who stammer appear to have slower connections between the brains regions that control speech. Interestingly, this difference is also seen in kids who have ‘grown out’ of their stammers.

This could mean that stammering permanently changes the activity of the brain, or it could show us that children with this type of brain activity are more likely to start stammering. Dr Chang says more data is needed before we can be certain one way or the other.

What researchers do know is that timing is an essential component of speech production. When we speak, we string together a series of movements to produce the right sounds in the right order, and at the right time. In stammering, the timing of these movements appears to be impaired so that the flow of speech is disrupted.

A brain structure, called the basal ganglia, may play a starring role in all this. Buried in the centre of the brain, one of the many functions of the basal ganglia is to control movement. Scientists think that people who stammer could have too much of a chemical, called dopamine, which interferes with the ability of the basal ganglia to provide timing cues for speech. They have shown that when people who stammer take drugs to block the action of dopamine, their speech becomes more fluent.

Dr Chang explained that there is a link between rhythm – a product of timing – and stammering. A study carried out by a different research team has found that children who stammer have a weaker sense of internal rhythm compared to those who do not stammer. When these children are provided with an external rhythm – in the form of song lyrics, for example – they are able to produce speech more fluently. This suggests that independently finding and sticking to an internal rhythm is key to speaking fluently.

These insights into the ‘stammering brain’ were met with mixed feelings among the group. Some people said they felt comforted by having a physiological explanation for why they stammer, while others were uneasy with being labelled as different by science. For me, it was almost a vindication; it has given me something to fight back with against assumptions that I may be partly to blame for my stammer.

I’m aware that a focus on science – and the drugs and treatments that may ultimately arise from it – is helping to feed our medicalised approach to biological difference. It has been argued by some in the stammering community that, instead of fixing people who fall outside the norm of fluent speech, the onus should fall on society to change its expectations of what it means to speak normally.

In an ideal world there would be room for both approaches, with science providing us with knowledge and society offering us change. Indeed, despite the group’s contrasting views, what we all seemed to share was a huge appreciation for the progress being made in stammering research and the prospect of one day having answers to our many questions. My hope is that this will be paralleled by progress outside the laboratory, too.

Cara Steger

 

 

Positive stammering

positive-language-possible-ableWhen I say to people sometimes that I see my stammering as a positive in my life, they can find it a strange notion. Normally people can only envisage stammering as a negative concept.

My stammering is my natural pattern of speech, and having a stammer does not limit my speech nor hinder my conversations. Communication is so much more than just a speaking voice; it is your body language, facial expressions, your aura. Over the many years in my adult life I have found that being quite open about stammering brings many more conversations and opportunities to make my speech a positive attribute in both my professional and social life.

Quite recently I was thrown back into the position of having to update my CV and prepare for interviews as I had relocated from Northern Ireland and needed to secure a new job.

I have had many discussions with people about how to introduce stammering into my interview conversations. Also dilemmas such as do we tick the disability box? When is the correct time and place to disclose the fact you have a stammer? Can we ask a potential employer for special measures without setting ourselves at a disadvantage?

Our main issue is that in fact we are all different, each person’s stammer is unique in the same way we are all individuals. What affects one person may not affect another, and what seems impossible to one person may be a breeze to another.

For me, I decided that my stammer was something I could be proud of. The experiences that I have had over the last five years I would not have had if I was indeed a fluent person. And so I sat to write my stammer into my CV without actually using the words ‘I stammer’.

This became so much easier when I look at my stammer in a positive way. Showing that through my working relationships my stammer brings strong characteristics is really uplifting. I am able to say that by being very aware of my own speech makes me much more aware and sensitive to other people’s diversities. This makes us much more approachable if others can see that through our own difficulties we are open to accepting theirs.

Through my contacts within the British Stammering Association, going to their conferences, Open Days and getting involved in community groups I can show that I have a good network and that I am actively sourcing and meeting my own needs for back up and support.

For me, stammering has not disabled my life, but has added to it. It has given me more skills that I may not have finely tuned if I had indeed been a fluent person. It has also got me more involved with people from all sorts of places and made me push my own targets forward in terms of doing things for myself and independent travel.

And so, during my interviews I always managed to get my stammer mentioned during a question regarding strengths, talents or interests. Never in a negative way, never in an apologetic way. Mostly it was well received, employers were genuinely interested and it didn’t seem to put any off.

Socially, as I have got older I have cared less about my speech and the amount of fluency I have. My friends and family have become more comfortable with it as I have opened up more. I cannot believe I wasted so many of my younger years afraid to discuss things and be open with people when I was struggling.

My own breakthrough, so to speak, was whilst taking part in some research and being asked to visualise and describe my stammer as a ‘thing’. Something tangible you can see and touch.

For me, this was what turned my stammer into a positive. At that time, I saw my stammer as a weed, like a growing, choking ivy. It could be chopped down, but it was always there, ready to grown again, untamed and relentless. I did not like the thoughts of living with that all my days and so there and then I decided the weed needed to change, something needed to be in its place. And only I could change that. Only I could make that happen.

So I became much more open, stopped trying to ‘fit in’, met more and more people who stammered through the BSA and was soon able to realise that so many people have this dreadful negative feeling towards their stammering. I wanted to change this, I wanted to try to get people to believe in themselves, and that even with a stammer you can be whatever you want.

A_sunflower

For myself, that weed is now a flower, a sunflower, tall and proud, bright and majestic. I had support to get it there, I couldn’t have done it alone. But we must reach out, go out on a limb, take a chance. We will stumble along the way, but the rewards are so much greater than finding we are choked by our own silence.

So for me, stammering has opened doors, albeit you have to be ready to pull that door open wide and walk through it. When you do, you are faced with a whole new world, one where we can all stand like those tall, beautiful flowers and feel the sun on our face.

Mandy Taylor

 

 

 

Transparency

I like to be really transparent. Early after a TBI, I had such magnificently apparent social communication impairments that my verbal blurts were excused. As I recovered in visual processing, attention, balance, auditory processing, and something else I can’t remember (probably memory), I looked a lot less disabled. That made the blurts more noticeable and out of place. [Side note: if you work in brain injury rehab, notice I did not include executive function in that list of improvements because that was on a painfully slower recovery trajectory.] As long as I was well-rested and with friends I could usually control blurts. Add in stressors like exhaustion, a crowd, background noise, and the blurting would let loose.

While verbal outbursts are often considered inappropriate, there’s a beautiful truth behind them. I told someone once she reminded me of algae. While she shamed me for about 10 minutes in front of other people for this transgression, what she failed to do was find out what I meant. I was attempting to give her the highest compliment I could think of. I’d been searching in my mind for how to compliment this person, and all that would come to me was a sensation of appreciation and an image of algae. So I told her about the algae.

Barton springsAlgae–the kind I was picturing–is a luscious jewel-tone, so saturated in color as to almost be unbelievable. It’s miraculous in its depth of color. It’s soft and inviting, pleasantly fuzzy even when wet. (That is so cool about algae!) Algae appears delicate but is robust, spreading its influence far and wide. You can try to stop it, but you must humbly lose. Your algae will return, and no matter how you feel about that, it will always be back: strong, resilient, soft, and green.

This was several years ago when I had no capacity to verbalize an explanation like that. It was just a sensation, the color, my childhood memories of Texas summer heat on my skin and the softness of algae on my arms as I rested in the freezing, unchlorinated waters of Barton Springs. I felt the memories, and I wanted her to be loved the way I loved playing with the stringy strips of green that floated on the clear spring water.

But no. Inappropriate. Rude, inconsiderate, oh well.

I have many Autistic and neuro-diverse friends, and we spend a lot of time communicating online. Since I now live in the frigid tundra of Portland, Oregon, I’m not hanging out at the swimming hole anyway. So I’m online a lot. I’ve learned many wonderful things about effective communication from this particular community, and I want to share two of my reflections about that here.

  1. Sometimes there is no cruel intent at all behind a statement.

Why, exactly, is it a problem if I say I don’t like your dress? I’m only saying I don’t like your dress. This isn’t to insult you. It’s 100% possible for me to dislike your dress while still holding you in the highest esteem and even asking you for fashion advice down the road.

Consider that sometimes there is no emotional baggage, ulterior motive, or crap behind verbal outbursts. They’re thoughts that come out without regard for the listener’s feelings. But that doesn’t mean they’re intended to hurt the listener.

If I say I don’t like your dress, we could move on. You’re even welcome to tell me that hurt your feelings! Then, I can say, “I’m sorry for hurting your feelings.” This is how it goes when you’re transparent with your thoughts and don’t assume someone’s trying to hurt your feelings.

  1. Be so transparent that it hurts.

I like to use HTML mark-up. You don’t have to understand computer code to do this, and in increases the odds that your intentions will ring loud and clear online.

If I want to be sarcastic, I make that into HTML-type instructions. (Instructions are inside <>):

<sarcastic>I don’t like your dress.</sarcastic>

(Of course, I don’t get why someone would say that sarcastically, but they might.)

If I need you to know that I sincerely love your dress:

<sincere>I love your dress.</sincere>

In real life, I speak in HTML opening mark-up. I say, “It doesn’t sound like I mean it, but I really like your dress.” Or, “Don’t be fooled by my tears; I’m really happy. I’m just crying.”

When someone with executive dysfunction blurts, even if they say something hurtful, you’re not obligated to assume it’s supposed to be hurtful or inappropriate. There’s always the possibility that the words came out in an unintended tone of voice, the wrong words came out, or that they were exactly the right words, but you didn’t want to hear them.

I want to make sure that we find partnerships in communication. People with brain injury are expected to curb our verbal outbursts, think before speaking (who really does that?), and be more kind and polite. I would ask that as we work on steps in that journey, listeners explore their listening and investigate the ways in which we are just as likely to misunderstand what someone said (or meant) as we are to sometimes say something that didn’t work out. Transparency, not resentment, might be a great key to helping us get through the awkward blurty times, whether we’re the listener or the blurter.

Cheryl Green, MFA, MS

Cheryl-with-waterfallCheryl creates media that combine personal narrative, humor, and social critique to create dynamic, accessible tools for cross-disability justice. She is on the board of Disability Art and Culture Project and served on the board of Brain-injury Information Referral and Resource Development (BIRRDsong). She volunteered with the National Black Disability Coalition and the Portland Commission on Disability.

info@storyminders.com
www.WhoAmIToStopIt.com
Stories from the brainreels podcast

 

Supervision at the fork in the road

image1We all start out with dreams and ideas about how our careers will go. It’s hard to foresee when, where or why the forks in the road will come, but it is almost certain that they will. This blog post explores two key ways in which supervision helped me to negotiate a fork in the path, keep hold of my dreams and step into independent practice.

Seventeen years ago, I embarked on a career in Speech and Language Therapy, with a dream to become a neuro rehab therapist. In the early stages of my career I was fortunate to have some great supervisors (also my managers), who nurtured my enthusiasm for neuro rehab.

In 2008, I took a senior post in a small department without access to clinical supervision within the organisation. I was holding a complex caseload, but for the first time also dealing with wider departmental and organisational issues. I felt the need for external supervision to develop my practice and take care of myself as I entered a more challenging stage of my career.

My line manager continued to oversee my work in post, particularly supporting my CPD, and helping me develop the SLT department. The separation of my clinical supervision to another time and place enabled me to attend to the needs of my clients, as well as my own needs, within this increasingly challenging work context. Through external clinical supervision, I had the freedom to reflect on the needs of my clients more deeply and my own journey more broadly.

Hawkins and Shohet (2007) discuss self-care as an important aspect of clinical supervision. Drawing an analogy between the ‘good enough helping professional ‘ and Donald Winnacott’s concept of the ‘good enough mother’. The ‘good enough mother’ may struggle to cope with the rigours of motherhood without the help and support of another adult, just as the helping professional may struggle to cope without the support of a supervisor. At this point in my career, I was faced daily with the devastating reality of people’s lives following brain injury. I was starting to develop quite strong ideas about addressing these needs with clients but also felt frustrated by the difficulties of achieving gains for my clients. I could easily have been worn down by these frustrations, but with wise and meaningful supervision, these difficult experiences ‘….. were survived, reflected upon and learnt from’ (Hawkins and Shohet, 2007). Through supervision, I became much more conscious of my concern to address my client’s ability to participate in their chosen life roles and started to think about how I could facilitate this for them.

It was at this time that my own personal circumstances changed. With a young family I was keen to be as present at home as much as possible without completely losing connection with my profession. I started to explore how to manage this change in my life and find a way to continue working within my chosen specialism.

Cathy and Sam have written about the changing role of supervision which ‘….. has now extended to one that supports and facilitates emotional resilience, opens up possibilities where there seem to be very few and fosters an individual’s personal/ professional resources to manage change’ (Bulletin, February 2013).

With this changing picture, refined by my professional interest and constrained by my personal circumstances, my supervisor helped me to consider diverse options as I stood at this fork in the road. I don’t remember who initiated the idea of independent practice, but I know that this path seemed daunting, much less travelled and insecure. I didn’t know how to begin walking away from the security of paid employment.

The supervisory relationship was a place of safety that allowed me to: test out ideas, evaluate the pros and cons of working independently, make plans and connections, review early steps and ask silly questions. I saw my first independent client in 2009, nearly six years ago. The transition to independent practice has been necessarily slow as I have been at home with my family, but this has brought with it opportunity to reflect on each small step in supervision and build slowly in confidence. With my supervisor’s support this process has been much smoother and more satisfying than it might have been as early ideas have come to fruition.

Work is not how I envisaged it seventeen years ago, but it does really work for me in the context of my life now. However, I could so easily have missed this path if I had not been able to access great supervision at the fork in the road.

Mary Ganpatsingh
www.communicationchanges.co.uk
@Comm_Changes

References
Supervision in the Helping Professions, 3rd edition (2007), Hawkins, P. and Shohet, R.
Supporting robust supervision practice, Sparkes, C. and Simpson, S. (February, 2013) Bulletin

Putting the Relationship in Supervision

images-9Supervision. The word invokes many different thoughts for me. The many supervisors I have had, and the many people I have supervised. And the formality of the word. I got a bit stuck when trying to move past this, so I read through multiple blog posts about having one’s communication shaped, ‘therapyed’ or embraced. These posts brought to my mind the way that we as Speech and Language Therapists (SLTs) advocate for all of this communication, in whatever form is successful or possible for each individual, yet when it comes to shaping my own supervision, the same rules just don’t apply. I turn up to therapy sessions with clients. But at times, have found it hard to access my own unique communication space (which will help in those therapy sessions I turn up to), why is that? We want our accountants to be au fait with current tax law, our mechanics to put the right parts in our car, yet for some reason there are times when we turn up to sessions not having invested in our knowledge space, which is essential to providing therapy. Why do we not seek it out if we don’t have what we need or want?

Reasons I have not accessed supervision include that I have worked outside of the NHS and just haven’t got round to getting any, I have had managers who haven’t seen its benefits (I have also had managers who have ‘over-supervised’!), and I have had supervisors where their style of supervision is just not my cup of tea. There have also been times when I’ve not been linked into a neat network of Speech and Language Therapists. At times I have craved this ‘simple’ structure of one senior SLT supervises me, and then I supervise an SLT below me. But currently that isn’t an option available to me. I am an overseas trained SLT, who has spent some time as a permanent staff member in the NHS, a wee stint working privately and am currently working as a locum in the NHS. My life is soon changing as I am looking to return home.

Right now, I am lucky, especially as a locum. I have regular supervision. I also give regular supervision. I have a clinical team leader (CTL) who is not an SLT, but who always has an open ear, and filing cabinet full of ideas, especially around complex issues such as safeguarding and setting up a service. But, we have both wondered on occasion, if she was an SLT, would we come up with the answer to a curly clinical quandary more quickly?

I also have, until recently, received private supervision from an SLT. On writing this I reflected about what brought me to private supervision, and it struck me that I was looking for that ‘simple’ hierarchical structure that I mentioned above. However, what came out was something different. I had the freedom to discuss anything as my supervisor was able to look at my thoughts and issues through a different lens, removed from the need to be managerial. Someone who was intrigued to help me find the balance in relationships, who did not have a stake in the outcome and, therefore, was able to challenge me in order to help me create boundaries within my work. In her removed position, she was able to help me understand what areas to drive forward clinically. However, this separation from my day-to-day work existence, meant at times I would need to go back to my CTL to float the ideas discussed.

It took me a while to access private clinical supervision. I would often go to my sessions with the anxiety that one has when the ‘to do’ list takes up three sides of paper. But when I would leave it was like a weight had been lifted off my shoulders – the exact same feeling that I have when I meet with my CTL. Although both of my supervisors are interested in serving the same purpose – making sure I don’t burn out – they come at it from differing perspectives.

The biggest thing I will be taking from my recent supervision experience is that it is all about relationships. The relationship with the supervisor and myself, but mostly the content of discussion is how I am relating to others. I have sated my need for the neat little SLT supervision structure. It is not a necessity to be supervised by your own discipline or receive clinical support from your own workplace. A perfectly excellent job can be achieved outside of these arrangements, as long as your supervisor knows what kinds of questions to ask, and is humble enough to say “Hmmm, is this what that looks like? If not, tell me more…” I can feel myself now asking similar-structured questions to the Occupational Therapists and Physiotherapists, who ask me how they should manage a particular situation. I pride myself on my ability to relate to my colleagues, clients and wider community as an SLT, but I need to leave my guilt at the supervision door because if I am not showing up to my own unique communication space then the relationships in my work just won’t work.

Anna Childs (nee Wivell)

The Quiet before the Word

An aneurysm ruptured in my brain when I was 27. The facts are simple enough. Yet, I find this topic resists such simplicity. I had been an American abroad, touring a show to the International Fringe Festival in Scotland. I was onstage when it happened, though I don’t remember when I stopped singing. I don’t remember the fall. My next clear memory was waking up in an Edinburgh hospital, after my emergency brain operation was already finished.

Situations like this tend to be terrifying for those involved, and to my parents who flew across the world to rush to my bedside, their memories of this Scottish hospital are infused by this anxiety. But what I remember most from this place was the Quiet. This was not a Quiet I had known before. It was a presence more than an absence, suffused with a marvelous sense of order.  I had a nothing mind, a flotsam mind, and it was carried on this placid current of Quiet.  To experience this Quiet was to be it. My body had undergone a traumatic experience, but my mind was serene. There was still so much I didn’t yet know about my brain injury – didn’t realize I’d acquired a language disorder called “aphasia” – and that my internal and external voice were both affected. With my inner monologue on mute, I was mainly spared from understanding my condition early on. Unable to pose myself the question: “What is wrong with me?” I did not, and could not, list the many things that were.

I would never want my impressions of the hospital speech therapist to be unflattering. She was nice enough. Attentive. But I registered her presence with a slight irritation. My days were suffused by this occupying and glorious silence, and then this slim woman, with birdlike shoulders, would pester me with things to do. I couldn’t exactly grasp her purpose there, but it was abundantly clear to everyone else. I couldn’t read without assistance. Writing was prohibitive. I could only say 40 or 50 words, and didn’t know when I was speaking in gibberish. It’s sometimes like that with a neurological injury. The brain is the organ of perception, so when your brain is injured, your perception can be injured too. I desperately needed my speech therapist. I just didn’t realize that yet.

My sense of awareness lurched forward in stages. When I was released from the hospital, I had to abandon the independent life I was living in New York, following my parents back to their Los Angeles home for a long language rehabilitation, which involved another brain surgery, and speech and language therapy three times a week.

I had always planned to return to Edinburgh, and visit the hospital that treated me, but it took more than five years to do so. I contacted my SLT beforehand and she didn’t simply want to meet up, she wanted to make me dinner too. She was incredibly warm. Over her homemade marinara sauce, we laughed and caught up, and she expressed her gratitude in being able to work on my case. She told me that many of her patients were often in more acute stages than I had been. They needed help breathing or swallowing. Though my language had been seriously disturbed after the rupture, at least she was able to employ speech exercises with me. That was rare.

I am so glad you decided to come back to Scotland, she told me. Even after such a distressing experience.

I said that actually most of my hospital memories were pleasant ones.

Really? She was surprised. You seemed so frustrated…

Her comment and her past observations made sense, but I also couldn’t correct her at the time. Now I was able to tell her that when left to my own devices, I had been content. Even blissful. The things that disturbed my equanimity were mainly related to other people – their expectations – often motivated by their concern for me.

My SLT gave that a lot of thought. She said that therapists are stuck in a difficult situation. It was important not to infantilize your patients. Even if their language is rudimentary, their minds are usually sophisticated. But when you think of them as adults, as people just like you, your empathy engages. And when you imagine yourself facing such an appalling deficit, you tend to fixate on the desperation.

But when we assume people might be uncomfortable, we start to see discomfort manifesting everywhere, she said. Expect the worst, the worst appears. And we rarely suspect we might be the source of our patient’s discomfort.

This conversation became a touchstone for me, a reminder of the constant limitations we face with our narrow perception.

I realize my brain injury was a generous one, because often I didn’t know what was wrong until I had already recovered from it. And these many years later, I see the perspective of the speech therapist, and the woman in the hospital bed. I am finishing a book about my path back to language, and volunteer with people who live with aphasia. I appreciate the wide variety of linguistic experiences, and as much as I can, I try to give people an opportunity to speak for themselves. Still, I know there is a lot of value in Quiet. And even though a word can be beautiful, so can the silence that precedes it.

Lauren Marks

 Lauren-Marks-ResizedLauren Marks is an American author living in London. In 2007, an aneurysm ruptured in her brain, and since then, she’s been writing her way back to fluency. She has been published in Fresh Yarn, The Huffington Post, Brain World, and Aphasia News, has spoken at venues ranging from book fairs to university classrooms, from professional conferences to storytelling events. In the UK, she volunteers at Connect: The Communication Disability Network. Some of this article includes excerpts of her upcoming publication, A Stitch of Time: Portrait of a Mind in Construction. More at www.AStitchofTime.com .

Reflections on what supports change and personal growth (2/2)

march14Continuing with our two-part blog post on the different strategies people employ to support change, this month’s entry reflects the voice of some of our clients who have generously shared their ideas below:

Dom: “When I am planning anything I am always trying to save myself energy and to plan anything I need to be energetic for. The first person I always go to is Marc. He is my best starting point. Then I go to Gary and then my parents. Marc is impartial, independent, and my friend. He wants to help out – he is my housemate and nearest carer. Gary (my paid carer), by contrast, is efficient and organised! All the things Marc isn’t. Asking Gary is like asking my Dad for something, but without the judgmental nature of my Dad! Plus I pay Gary and so I can expect the job to be complete and not forget stuff. My parents are like my safety net – the last line of defense.”

Here Dom identifies the importance of the initial planning process when contemplating change, as well as considering the personal demands the change involves – including the emotional and physical energy engaging in something new can take. He highlights the value of knowing who he can turn to for what when looking for support as different people bring a unique set of qualities and skills and are, therefore, more naturally suited to helping in some situations more than others. Finally, Dom signals that family are not always the first port of call and that being willing to pay for help can usefully bring consistency and reliability.

Tony: “With something I want to do that I am motivated about I rely on myself mainly. But with things I know I should do like going to the gym I need others to help motivate me. To get to the gym, Jane (my wife) keeps on at me and gives me a push! Knowing that it’s going to do me some good and make me feel better when I have done it also helps to get me there!”

Tony emphasises the importance of personal meaning and engagement when trying out something new. He also reflects on the significance of recruiting support from others for desirable but less intrinsically motivating activities. Finally, drawing on past experience to identify a sense of future achievement is highlighted as a helpful means of self-motivation.

Cara: “It’s useful for me to set goals for myself, both short- and long-term when trying to make a change. Having something tangible to work towards keeps me focused and moving forward. Encouragement from other people – family, friends, or people inside therapy – gives me the strength to push myself and try new things. I’m very inspired by other people who stammer and their stories. When I see someone living their life in a way that I thought was impossible, it motivates me to change.”

Here Cara foregrounds the value of structure and a clear idea of what she is working towards from the outset, which she achieves by breaking bigger aspirations down into smaller, more manageable steps. She identifies recruiting the support and encouragement of others as a valuable means of promoting a more experimental attitude to change and fostering greater risk-taking. Cara also cites the importance of meeting others with similar experiences for inspiration and the re-definition of what is possible.

Walter: “My current approach to ‘new growth’ is to be tough with myself in taking on new challenges in which my stammer is likely be “an issue’ – especially at work (e.g. chairing meetings, talking in senior meetings) – having decided that I am happy to present myself as someone with a speech problem. It would otherwise be all to easy to spend the rest of my life internally using my speech as an excuse for not doing things, while externally trying to present myself as fluent – that if anything would cramp new growth. The other important new developmental thing I have taken on is to be proud to talk about my stammer and how I handle it – it is, after all, an extremely tough course on which to find oneself, much like SAS selection in psychological terms, and, as a person who stammers, I am proud of how I am surviving it and keen to project my pride in that survival.”

Walter signposts the importance of courage and being willing to challenge himself to take risks and step outside of his comfort zone. He highlights the value of working hierarchically as a means of doing this. Walter also advocates being more honest and genuine with people rather than attempting to hide any communication difficulties from them. Being aware of the short- and long-term costs of not making the change is also cited as self-motivating. Finally, Walter highlights the value of developing a kinder and more compassionate understanding of the day-to-day challenges of living with a communication disability, reframing openness and a willingness to share his personal experience of stammering as an act of pride and personal achievement.

I thank everyone who has contributed to this two-part blog post for their time, self-scrutiny and insight, and hope that their diverse examples inspire you to consider the ways in which you support your own change process – and to even contemplate trying out something new.

Sam

Who or what helps us make the changes we strive for? (1/2)

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As we step into 2014, we may have exciting new projects ahead. The weather is starting to change, there may be a spring in our step and our goals for the year may seem more possible. New growth feels achievable! So how do we each go about attempting to make the changes we are striving for? Do we launch into the new adventure with planning and preparation? Do we consider who or what we might need to set up the new experiment and how we might sustain the changes? This month we hear from three colleagues who share their experiences of embarking on a change. Next month we hear the voice of our clients. What emerges from these stories is the unique and different ways people approach change, using a combination of personal knowledge & resources and the process of reaching out to others for help to start out on a new path.

Sarah reflects on how she set up a change to her life recently. Sarah starts with turning to others: ‘Doing it with another person e.g. spouse, who wants to make the same change for the same reason; doing it together can make all the difference. Having others around me who have made this change or a similar one and seeing the benefits it has brought them can be inspiring. Also, being confident and assured that those who may be supporting me in change are well equipped, be it in terms of qualifications, emotionally, intellectually etc.’ And then looking to her own resources: ‘I have found taking smaller regular steps is more likely to result in lasting and actual change. Seeing benefits (albeit small) can spur me on and be very motivating. Being flexible and open to adjusting my expectations or goals in light of new information can keep the momentum of change and stop me from going backwards. I often think of the wheel of change we sometimes use in therapy and how easy it is to slip backwards if new habits aren’t maintained!’

Nic knows what works for her: ‘My projects usually start as an idea while I’m cooking tea for my 3 kids. In between peeling, stirring and then usually overcooking, I brainstorm ideas on the pile of scrap paper I keep in the kitchen for this very purpose. The next step is to talk to my trusted, enthusiastic, inspiring, always encouraging colleagues and my service manager who generally tell me to ‘go for it’. I must then set myself a strict deadline to ensure the idea is not squeezed out by the pressure for face to face clinical contacts.’

Mark: ‘In my experience support for ‘new growth’ comes from clinical supervision, sharing of ideas and projects with supportive and motivated colleagues, good team dynamics, and a supportive line manager. I found the opportunity to talk through the situation in relation to a big job change recently really helpful, especially my feelings related to it. It felt invaluable to do this with someone unconnected to the situation in any way (in private clinical supervision), as their distance and impartiality, not to mention enormous skill in listening and hearing the real issues, really helped me to see what was happening and to tease out why I was feeling such mixed emotions.’

New growth depends on many factors, including reaching out to a variety of people (both those within and outside a situation), being flexible enough to adjust expectations, setting useful deadlines and knowing what works for you as an individual. We invite you to email us with your stories of change and growth. What helped or hindered you to move in the direction you wanted? What lessons have you learned that you are carrying forward into your next innovation?

Thanks to everyone for their contributions so far!

Cathy