An emotional hand grenade with the pin pulled out

I’ve had to deal with the aftermath of three major emotional explosions in my life. All three involved a period of deep mourning for the loss of who I perceived I was and eventual reconciliation with myself. It turns out the explosions took away a perception I had of myself that wasn’t really part of me; like a sculptor who creates by chipping the marble away.

The first explosion occurred when I was 16 and in the final year of secondary school. I had been going to speech therapy throughout my childhood in the hope I would get rid of my stammer. I had unwavering faith in this. I had to get rid of my stammer so I could cope with being an adult, or so I thought. I constantly asked myself, "How could anyone function as a grown up with a severe stammer?" Also, I heard that it was easier for a child to get rid of their stammer and much harder for an adult. Therefore, I had to catch the last boat to Fluent-ville and I was already running late.

I attended speech therapy as usual one day when my speech therapist handed me an emotional hand grenade with the pin pulled out. She told me "I am going to pass you on to a therapist who deals with adults who stammer".

I thought, "Sorry, what did you just say?" I said, "Sssssssssssssss..." and stammered, both verbally and emotionally.

And that's when the hand grenade went off. I was dragged into adulthood before my time and in the process lost hope and lost my perceived fluent future. I simply wasn't ready to be called an adult nor was I ready for the realization that I would have to live the rest of my life with a stammer. I felt I had failed myself in the worst possible way. I had failed to give myself the means to be myself.

I saw myself as horribly disfigured from that explosion and the ringing in my ears deafened me to my voice for years. It took 12 years of emotional turmoil to come to terms with being an “adult who stammers”.

The second hand grenade I had to deal with was my depression and nervous breakdown. The explosion blow away my flesh so I was just a skeleton; it drove away everything except my bare bones. I had to layer each muscle back onto my skeleton and repair each nerve fibre and tendon. I had to rebuild my emotional wellbeing one cell at a time. It took two years.

The third hand grenade that was handed to me was Parkinson’s disease, “You might have Parkinson’s disease”, my disease said and dangled the pin from the hand grenade in front of me. The wait was agonising to find out whether the hand grenade would explode or not. It eventually did and separated my mind from my body and catapulted me into the clutches of a prognosis which tries to dictate to me, “you will be severely disabled”. I’ve been trying to glue my mind and my body back together ever since.

Ultimately, the three explosions have enabled me to know how determined and resilient I can be in my life. The aftermath has helped me to refine how I see myself and become a lot more realistic about who I am. I’ve learnt to be alongside the problems I have. Each explosion taught me something new and gave me the opportunity to learn and challenge my perception of who I am. I’ve slowly emerged from the marble…

Going for a wander and making up new recipes

I never used to go for a wander around my mind. I used to stop myself because I didn’t trust that there would be anything to find. Sad, isn’t it? It all comes from my old friend stammering; the difference I perceived between the fluent voice in my head and the dysfluent voice I heard when I spoke undermined the value of my thoughts. Because I perceived that the fluency in my head, the very nature of my thinking, was distorted and corrupted by my stammer, I didn’t trust myself to do justice to my thoughts in the expression of them.

I trusted my ability to digest and take on board knowledge, I just didn’t trust myself to carve my own path through that accumulated understanding; I could follow a recipe but I wouldn’t allow myself to make up my own recipe.

That has changed now and it is thanks to Parkinson’s. As my physical ability has suffered it has, in contrast, brought forward the ability of my mind and made me very aware of the value and privilege of having a functioning mind. That sense of value has allowed me to trust my mind. My writing is a testament to the new found joy I have of wandering around my head. Isn’t it brilliant to be able to think and not constantly judge yourself?

When I started to write this post I didn’t know where I would end up; I just had a vague notion of describing wandering around my head. I opened myself up and developed the ideas as they arose in my mind. I was making up the recipe you are reading; for me, the process of coming up with the different steps in the recipe tastes good!

The value of having Parkinson's disease

This may sound strange but I am grateful for having Parkinson's disease. Let me explain. I have a stammer, which can cause huge emotional turmoil and difficulties with forming an identity and a stable inner and outer emotional life. Stammering can become a blinding white light, which can blot out who you are.

When Parkinson's emerged it plunged me into darkness for a while by switching off the blinding white light of my stammer. As such it enabled my eyes to readjust and see the candle light that truly illuminates who I am.

Parkinson's taught me how to see that light; that's what I am grateful for. But you don't need to have Parkinson's to gain this insight; it was just that the light generated by my stammer was so intense that it required Parkinson's darkness for me to see the candle light.

You can turn off the blinding light by acknowledging that the presence of this light is not your fault (you are not responsible for the state in which you are born). Also, there is always something left to do in this life. Within this something there is a choice. Recognising this makes it possible to see the originator of this choice (i.e. you!) and to choose to see the candle light that reveals who you are.

1. Somebody I know - The problems of stammering

The Problem - How can I possibly pull two mountains together?

My mind is a fluent, non-stammering mind. My voice is a stammering voice. When I think I do not stammer. It is only when I attempt to verbalise my thoughts does the stammer intrude.

In the past I saw myself as separated from myself; one part of me, my mind, was standing on top of a mountain surrounded by a thick covering of cloud, invisible to all but myself. The other part of me, my voice, bathed in horrible sunshine, was standing on top of another mountain miles away from the first mountain.

My mind in fluent despair saw the ideas I carefully constructed and sent to the other mountain become shredded and degraded by my stammer; each idea my mind sent across lost its essence and fell away. As a result I did not recognise my external voice as a valid representation of my mind, the distance between the mountains was too great. Therefore, I was split in two. I was fluent and I stammered at the same time. I was confused. Terribly, destructively confused. How can I have two separate voices at the same time?

I lost myself in the gap between the mountains. This led to a very painful circular argument; my fluent internal voice undermined my external stammering voice and my external stammering voice undermined my internal fluent voice. So, whenever I tried to locate my identity either internally or externally it was undermined by the other contradictory voice. I ended up being nowhere. I couldn’t form a stable identity as I oscillated between my separate voices. It was very disorientating and very painful.

Because the emotional response I had to my stammer was so much more intense than my reaction to my internal voice I kept reacting to my stammer and eventually all I heard was the explosions of stammering blocks. I pushed myself towards the inside edge of my face and I existed very near the surface of my speech. I lost my inner identity and literally became my speech problem. All I heard of myself was my stammer.

My stammer had other consequences too. I felt that it was seemingly beyond the control of my mind (I never knew when I would step on a stammering landmine or how to bandage the wound when I did) and therefore every time I stammered it dismantled the value of my intelligence and my mind. I also felt alone in my head because I perceived that nothing of me (e.g. my thoughts, my consciousness) was getting through my stammer. I felt cut off and isolated; only my stammer was being seen and heard. Even when I was talking (no, stammering) with someone I felt isolated. Therefore, my “natural” state was to be alone with my thoughts.

Allied to thoughts of isolation was the fact I blamed myself for my stammer; it seemed logical to me that whatever came out of my mouth belonged to me. If I insult you then I would have to take responsibility for engaging and moving my mouth to form the insulting words. It was also my mouth that formed the stammer. Therefore, I was responsible for my stammer. If I was to blame I must truly hate myself to inflict such pain on myself. I concluded I deserved the punishment of loneliness for being unable to conquer my stammer. Why would anybody want somebody like me who was incapable of saying mere words (any infant spoke better than me)? I perceived myself as simply not being good enough to overcome my stammer. I couldn’t be me; instead I was something (my stammer) that I hated. Why would anybody want me if I didn’t want me?

Please read part 2 and 3...

2. Somebody I know - The turning point?

For all my life I have felt great comfort being with my family and I was given the freedom to explore and develop my own interests. It was through this freedom and these interests that I found ways to express myself outside of my stammer (e.g. as I was growing up school work became my means to express my mind). In particular, Science gave me a way to understand the confusing world around me. Importantly it gave me answers to where I had come from and who I am. Also, Shakespeare, in his astonishing use of language to verbalise the inner emotions of his characters, taught me that words and voices could contain the ideas of the mind. Maybe, just maybe this applied to me; the gap between the mountains perhaps wasn’t that great.

Then after I completed my Masters course I had a nervous breakdown. It simply emptied me out; like a water balloon thrown against a wall, I burst and leaked depression everywhere. It took me two years to patch the balloon together and only after this time did I dare to fill it with emotion again. I learnt to never fill it to bursting again.

In many ways going through a breakdown teaches you the depth of your determination and fortitude; choosing to move through the howling storm of depression and finally to emerge from the other side wipes the blackboard clean but still with the former words faintly visible. The depression is still there but it is less intense; you can write over the faint words with new understanding while always referring to what you have been through.

Please read part 1 and 3...

3. Somebody I know - learning to live alongside difficulties

Possible steps to a solution

One of the main lessons I learnt from my breakdown was acceptance of the many challenges of my life. If I could meet the challenge of severe depression then I can overcome anything! So, I decided to take on the challenge of scientific research, which was something I had wanted to do and a goal that had survived my breakdown. I applied for research assistant jobs and to my surprise I was offered one in Oxford. I did say I liked challenges! I moved to Oxford on my own and I was successful as a research assistant. I gained a huge amount of confidence. After 3 years I was offered the chance to do a doctorate (DPhil) at Oxford University. Of course I said yes! I like a challenge!

During this time I attended a speech course with speech therapist Dr David Ward. He taught me a technique called “the slide”. I have difficulty moving from the first sound of a word (e.g. “f” in forty) to the vowel sound (e.g. “f” to the “o” sound in forty). I would say the “f” sound but get stuck in the transition to the “o” (e.g. “fffffffffff…ffffffffff…”). The slide is designed to ease the transition (e.g. “fooooooorty”). In essence it is deliberately stammering but in a controlled manner. When I used it I could get past the block and link up with the rest of the sentence I had in my mind. Then it hit me like a cold shower that becomes warm: for the first time in my life I could hear my voice!!! I could recognise my mind within my voice! I could be me! This had a profound impact. The explosion of stammering blocks no longer deafened me to myself. When I stammer now I have a better perception of the fluent parts of my speech. I can hear me and not just the stammer.

During my DPhil I felt the pressure and expectation and worked very hard on my project and as a result fell into depression again. I went to the University counselling service where I met a brilliant therapist, Ruth, who introduced me to Cognitive Behavioural Therapy (CBT) and the philosopher Martin Heidegger and his book “Being and Time”. In particular, Heidegger’s idea of thrownness: we are thrown into the world in a particular state but we are not to blame for this state; we did not choose whether we are male or female, have two eyes or have a stammer… Hang on, did you say I’m not to blame for my stammer?! It was a revelation! I wasn’t to blame for my stammer! This had a huge impact!

Another idea of Heidegger that complemented this was his notion that the process of being thrown into the world had a special type of momentum. Although our specific thrownness is fixed we have the potential to use the “tools” of thrownness (the structure and varied function of our body) to do a huge array of things; and we can choose how to use the tools. We live in a world where there is always something left to do.

I then read Kant’s “Critique of Pure Reason”. In it Kant develops the idea that how we view the world determines what we see. We impose a structure onto the world in the way we think about the world. This gives us great power in determining the meaning of our world.

I could bring these various strands together to weave self-compassion and acceptance into my life. I could hear my voice, I wasn’t to blame for my stammer, I always had something left to do in my life and I could interpret the world how I wished. This led me to conclude that I could be my voice, there was no reason to hate myself for something I wasn’t to blame for and there was no need to be dragged around by my stammer or depression anymore; I could take control in how I reacted to difficulties.

The two mountains have been brought closer together.

Parkinson’s disease

During the last two years of my DPhil I was unknowingly suffering the onset of Parkinson’s disease. Again, through determination and fortitude (and the invaluable support of my family) I managed to finish my DPhil despite suffering from Parkinson’s (not many people who graduate from Oxford can say that!). When the Parkinson’s diagnosis came I was grateful to my stammer and depression for teaching me how to cope with a chronic, incurable disease; unknown to me, I had been in training all my life! Thanks to my equally brilliant current therapist Angela I also found space for me within Parkinson’s like I found space within my stammer and depression.

I now see the immense value of the process of life. It isn’t about the goals we have set ourselves: it’s about how we live our life. Achieving something teaches me what I already know already; the process teaches me what I didn't know. This is possible because there is always something left to do in this life...


Please read part 1 and 2...

I remain intact

I'm surprised at myself but it's also a feeling of liberation. I'm starting to not care about my stammer. I've travelled so far with the burden of trying to climb outside of my thrownness and be a fluent speaker; I tried to escape from my own skin; I was terrified of the means by which I talked and neglected to appreciate the process of formulating a thought and being me. I cared about my stammer and I forgot to care about me.

Now I realise no matter how well or badly I express my thoughts, their value remains intact. As I stammer my value is preserved. I'm not located in my listeners comprehension of me; I am located right here in my thought and in the openness I show. Can you see me? Do you approve of me? I am beginning not to care about such things.

If I want to focus on my stammer and miss the rest of me that's a choice I can make but in no way does my own choice diminish me. I persist.

If you want to focus on my stammer and miss the rest of me that's a choice you can make but in no way does your choice diminish me. I persist.

This can lead me to loneliness or togetherness, happiness or sadness, contentment or agitation; wherever it takes me I realise now that my stammer does not dismantle me. I remain intact...

Blind for 28 years

I learnt to see 28 years after opening my eyes...

During those years my voice belonged to my stammer. The deafening explosion and shell shock of a stammering block sent me running from myself until I could no longer locate my voice and I lost myself; I became my stammer.

I picked up the trail of my lost self by learning to hear beyond my stammer to the fluent parts of my speech; this helped me see myself (I am fluent when I think) within my voice and alongside my stammer. I did this by stretching the first sound of the word beyond the stammering block and then linking onto the rest of the sentence (sort of beating the stammer at its own game). It was a revelation! The ringing stopped in my ears and I could hear my voice! I could hear me!

This has helped me to find peace from self-hatred, understand my thrownness (my stammer is an acceptable part of me) and see my not-yet: I am free to be me in my potential and not my limitations.

Thank you Dr David Ward for helping me find my voice.

The cost of disability - a cautionary tale

I think I need to apologise to my body and myself because I have played out the true cost of disability: loneliness. I was thrown into the world with a stammer, depression and Parkinson’s but the presence of these things is not my fault (they weren’t even chosen for me, they just are). What is my responsibility is how I manage these things and in the past I tried to contain their effect on me (and other people) by closing myself down. At the time it seemed like a good strategy when not one, not two but three very difficult things were punching me in the face every second. My strategy was to dull the pain. But, looking back I realise my strategy introduced a fourth entity that threw punches; I see myself standing over myself joining in the beating. I was defeating myself by shutting myself away and making loneliness almost a certainty. It helped to stop the beating by seeing the thrownness of my problems; I am not to blame for their presence in my life nor am I a slave to them.

So, I’m sorry body and mind for making your (and my) isolation more likely. I built barriers around myself to keep my disabilities away but I ended up keeping away everything else; I also stopped myself from reaching over the barriers and sharing myself. I’m sorry you haven’t been wanted. I see the choice I have to change this and I’m trying to make up for lost time before Parkinson’s potentially takes the possibility away.

Disability can be defined as physical difficulty engaging with the world (I see mental ability as having a physical basis so this includes mental difficulty). Our world contains varying physical terrain we have to manoeuvre ourselves in and around. There is another terrain we have to negotiate with, that of society and the interaction between people. Disability can lead to isolation in both types of terrain. I’m not sure which is worse; having difficulty getting to a social event or once there, feeling alone in a room full of people. Help should be given to battle both types of terrain isolation.

Why I stammer

An important part of being in the world is we react to things; other people, objects, even our own thoughts, emotions and memories. A reaction always involves thought and often elicits an emotional response that diverts you from the course of action you were on.

When I’m talking or about to talk I react to the perceived importance of what I am about to say and to whom I’m saying it with fear and negative memories and I try not to stammer. Of course by getting in the way of myself like this, I stammer. Fear of not being understood makes me think I have to get my speech right first time and therefore I pressurise my underlying susceptibility to blocks; thus, turning my previously fluid speech into fearful treacle.

When the social pressure to perform is removed, I am comfortable with my listener and the importance of what I’m saying is kept under control there is no reaction; therefore no fear, no pressure and no stammer. A way to achieve this non-reaction is to believe you don’t have to get it right first time.

Why am I surprised?

I’ve just had an almighty stammering block while talking on the phone. Predictably, the old feelings of shame, frustration and self-hatred rose in my mind. But I suddenly overheard another reaction; I was surprised I had a block! I’ve been stammering all my life so why was I surprised?! Its like being surprised I can see when I have eyes. Stammering is part of me; of course I don’t want a stammer but stammering is something I do. It is part of me (but not the whole of me).

I think I was surprised because I have tried for so long to deny my stammer. However, it is impossible to push yourself away. Trying to deny something of your self causes pain. I stammer because I am a stammerer. It would be strange if I didn’t stammer! This is not to say I am only my stammer, I am a lot of things because my thrownness as a whole is larger than any one part of me.

The same logic applies to my depression and Parkinson’s; I shouldn’t be surprised I manifest the symptoms of these conditions when they are part of my thrownness. For example, I went to get my hair cut today and I noticed in the big mirror the blank expression and tremor of Parkinson’s. Again, it shocked me. But of course I show those things, I’ve got Parkinson’s! It is part of me.

Accepting my disabilities is learning not to be surprised by them.

What is stammering?

According to Heidegger an essential characteristic of human beings is the need we have to communicate and share with others our state of mind and understanding in an intelligible way. It is one way we define our place in the world and who we are. A truthful expression of who we are can be defined as authentic; the self is being articulated. In contrast, merely repeating what we’ve heard without any thoughtful contemplation is inauthentic; the self is laid to one side.

Putting our experience into words is equivalent to the construction of “themes”, which are related, but not identical, to the experience; for example, the word “sun” does not carry the Sun with it but does trigger an average notion (or theme) of the “sun” in the mind of the listener. Themes can either be authentic or inauthentic.

Stammering disrupts the means by which the need to communicate is fulfilled. It renders the construction of themes confused and inauthentic; therefore, constantly and painfully shifting a sense of self and belonging.

Stammering is thematically inappropriate communication. When I want to talk, I think about the theme I want to convey. This phase of thinking is free of stammering and feels authentic, I am gathering together my thoughts and building my theme. When I’m ready to physically verbalise my authentic theme it feels like my stammer imposes its own, inauthentic theme, pushing my intentions out of the way and fulfilling its own agenda. There is an intermingling and fight for control between my personal, authentic theme and the inauthentic, stammering theme: as if two songs are being played at the same time. It is very confusing and disorientating. I’m not sure if authenticity wins the fight…

What does a stammer feel like?

Imagine you are the head of a company called “My Consciousness Inc” and you want to send an important message to another company called “A Listener,” which is located on the other side of town. The message is so important that you arrange for a courier to hand-deliver it; you are both the instigator of the content and the means of its delivery when you speak.

So you give the message to the courier who then sets out in his car to find the headquarters of “A Listener”. Sometimes the burden of the message or the burden of the journey is seen to be too much and the courier refuses to go; the message is never sent out as you avoid speaking. On other occasions the courier reluctantly agrees to go and sets out in his car. However, the journey is not simple; the roads are confusing and full of memories, fears, shame, anger and frustration, all in their own cars causing traffic jams and accidents. Indeed, they deliberately block the courier or run him off the road so the message arrives late or the block is so bad the courier turns back.

You perceive that the company’s reputation is at stake unless the message gets through to “A Listener” so you obsessively monitor the progress of the courier. You wince at every traffic jam and berate the courier for failing to arrive on time or not at all. But you are also the courier so you end up beating yourself up, which only increases the volume of other traffic on the road.

Once the courier agrees to go, he usually finds “My Listener” and hands the message over; but as the head of “My Consciousness Inc,” you only see the time spent in traffic jams and exaggerate the influence of the other cars on the road. You wring your hands over how inefficiently the message is conveyed and not whether it was delivered; the means and the details of the journey become more important than arriving at “A Listener” headquarters.

As the boss of “My Consciousness Inc,” you blame yourself for not being able to choose a different courier but you are wrong to do so; blaming the courier, who is part of the company anyway, is blaming yourself twice over for something that wasn’t your fault.

Stammering is part of your thrownness and as such is blameless; nobody, including yourself, is responsible; stammering (like the fact you were born with two eyes) just is.  You can’t change the fact of thrownness but you can change how you react to it. Choose to clear the emotional traffic from the road and choose to notice when the courier delivers your message instead of only seeing when he doesn’t.

Learning from adversity

Being comfortable reinforces what you already know, which can be very beneficial. Feeling uncomfortable creates the opportunity to learn something new.

I’ve had a stammer all my life. A stammer, like Parkinson’s, is a chronic condition; it has to be dealt with every day. Again, like Parkinson’s, there is no cure for a stammer. It has been a long, uncomfortable road but through my stammer I learnt Heidegger’s idea of thrownness (the state in which I exist is blameless, it just is); that I can’t choose my thrownness but I can choose my reaction to it. I also learnt resilience dealing with my stammer. It turns out that all these valuable lessons are applicable to Parkinson’s. A stammer was the perfect dress rehearsal for coping with the challenge of a Parkinson’s diagnosis. Therefore, quite unexpectedly, my stammer had a positive influence on my life and in the forging of who I am. My stammer can be seen as the classroom wherein I learnt the clarity to cope with my Parkinson’s. I’m glad I concentrated in that lesson!

We all face adversity during our lives. Sometimes things happen outside of our control. This can be incredibly disempowering. However, real control and real empowerment comes from how we react to a situation. The adversity of my stammer, because I reacted to it in the right way (I learnt from it), shines a light on the adversity of my Parkinson’s. I am grateful to my stammer because without it my Parkinson’s would be shrouded in darkness.