You don't know what you've got 'til it's gone | Brian's experience

Well into my 79th year, I am a retired secondary school teacher. After a failed attempt at becoming a priest in the Catholic Church, I found my way into the world of education as a teacher.  

In 1968 and the adolescent boys in Broadmeadows really were not that interested in the Mathematics, Science, English and Social Studies that we tried to drum into them, supported by the strap. The school Principal of the day advised at my commencement interview, “Mr Reed, the boys here expect to be strapped. Here is the address of a boot maker in Sydney Road, Coburg. He makes good straps.” In spite of that, I feel confident that the vast majority of them found their path among the full array of trades that were on offer.  
Over the years, my words of consolation to despairing parents often were, “don’t worry Mr and Mrs ‘Brown’. In years to come, your boy will have a trade and his Ute full of tools. He will be married with a couple of kids, paying off their home mortgage and having family holidays in Fiji.” Our schools managed to keep young ‘Brown’ on the straight and narrow until he attained school leaving age.  

During one of my winters at Broadie I contracted a Streptococcal Throat. Penicillin treatment, one week sick leave and curiously no certification required and the sick leave was waived. One’s throat and voice were absolutely vital for teaching, as well as everyday life. 

My path led me into TAFE and senior administration in what grew to become probably the largest TAFE Institution in Victoria and still is. 

My place was in the classroom with the impressionable and knowledge thirsty youth of the day. A step to the side found me at home in Catholic Secondary Education. Many years in those hallowed places I retired happily with my first wife of only three years. 

Throughout those happily challenging years, my voice was my ‘tool of trade’. What can a classroom teacher, senior administrator, husband do without the gift of speech?  

You don’t know what you‘ve got ‘till it’s gone.’

After a few lengthy and thorough neurology consultations and associated tests, there was no clear answer that was coming to or from my new specialist. With his professional humility, I was referred to the Neuro Muscular Clinic at Royal Melbourne Hospital for a second opinion.  

At the first consultation, my RMH specialist began thinking and talking in the direction of some neurological palsy that was progressive but isolated. This revealed a use of the description ‘progressive’ that was new to me. It certainly was not the ‘progressive’ with the positive connotation that we as teachers liked to use about ‘Brown’ when he was making good progress. 

Although all that was spelled out gently and with clarity, my mind was racing in all directions and my emotions were starting to make themselves known to me and to the doctor. 

Early on in my diagnosis I coined the expression, “We are not sitting around for something to happen. It will have to find us.”  

My bottom line was that I was too young to die soon and I was not sick. I felt well. What’s going on here? How was I to relay all of this to Jing, my wife, my darling with whom I had been married only since ‘yesterday’, or so it seems. Retirement was going so well. Superannuation was doing its job very well. We both were enjoying good health. To this day, when I wake every morning, I feel fine. I thank God I am alive. 

All of my physical abilities functioned as they should, except ….! My morning greeting to Jing, it’s not me speaking. There was no soreness anywhere. What the hell was happening? And so the ‘progression’ had set in. Increasingly the quality of my voice was deteriorating albeit slowly. 

I found it automatic that I excuse my voice to people with whom I am communicating. Some kind people said “you don’t have to apologize for your voice, Brian,” and “Brian, you still sound the same to me.” This kindness upset me more so. I had never been the recipient of such kindness that was quite contrary to how I felt. 
The knockout blow, “Brian, sorry but I can’t understand you” came through the phone. Oh my God, my own brother cannot understand me. It still upsets me to write about this.  

My primary means of communication emanate from sms and email. I carry a card bearing a brief self introduction and explanation of my being voiceless. People are very understanding and accommodating, with some sad responses being - 

 “that’s okay”, in my mind I want to reply, ‘not it’s bloody not!’;  

 “not a problem”, my mental reply, ‘yes it is!’ 

 Using simple signage, we establish that my hearing is okay. 

Rudimentary homemade signing is quite effective and multi-lingual, with thumbs up coming out tops. 

I am discouraged from trying to speak because the emanating sounds resemble only the wildest large angry animals to be found roaming some of the world’s wilds. 

You don't know what you've got 'til it's gone!

Post-script:

I was invited to write my story as a person who has been drafted into the mnd world. One of the main reasons I readily took up the challenge was I have become, through no apparent fault of my own, a mute. As such, one way I cope with that is to write. Earlier I said that often my ‘tank’ is full of opinions and so on. As a ‘talk writer’ I have some advantages - I don’t know whether you are  ‘listening reading’ or not. I have the luxury of ‘listening reading’ and correcting and adjusting before you ‘listen read’. One plus I give you is that you can really take your time with digesting what  comes with my ‘tank emptying’. 

I like to think that giving you a little autobiographical intro sets the scene of some who are called to educate, usually have one major ‘tool of trade’, our voice. I say ‘usually’ because there are some whose lot in life has included being voiceless even from birth. 

Have my thoughts on my ‘entrapment’ changed? Basically they have remained the same. My faith, my marriage with Jing, and my life prior to destruction, have each stood me in good stead. Life is finite for one and all. We are mortal. We have been born into humanity and we are given stewardship of it and we are challenged to do with it what we can or choose to do. 

Thoughts on Science, Care and Treatment

The first year of this slow ‘progression’ had me in the hands of the RMH Neuro Muscular team. Of course, we are all mortal but it should not be in this manner. The reality of this condition having only one end point was slowly sinking in for us. The gravity of this reality was underscored by verdicts from Spech Pathology, Voice Analysis, ENT (Ear, Nose and Throat), Nerve Conduction Management, MRI and Respiratory specialists. For ease of travel, zoning and availability of support, care/supervision and treatment, I was transferred to Northern Health at Bundoora. 

During the ensuing two plus years, the three monthly Clinics with Doctors and Therapists who monitor closely the ‘progression’ through checking for symptoms and any changes therein. Medications are administered and again monitored closely for effects, side effects and adjustments. There was quite a sprinkling of denial during the period of deterioration. Being a gradual change, there were not any instances of ‘Oh my God, it’s a lot different/worse today.’ 

I thank God and the late Bill Hayden for Medicare and the ease with which it functions for us patients. Yet I have to ask, ‘where do all the donation dollars for research go?’ In this day and age why have there not been any breakthroughs for the treatment, cure or prevention of mnd? Surely there must be some doors that can be opened in these realms of scientific advances? In my case, I am told that the mnd seems to be isolated to the Bulbar region of my body, which is a physical domain is it not? For goodness sake’s we are not talking about my soul, my spiritual life and wellbeing. Okay, there are no answers to that set of questions, but where are the announcements or updates on scientific advancements or areas of promise that are being explored? 

*Note: mnd* - In my mind the disease does not deserve to have capital letters.