The story of Tommy
It only took 43 years for me to speak to somebody that has the same disorder with which I was born. That is – by any stretch of the imagination – a rather long time.
In fact, the conversation took place on my 43rd birthday. You see, I have never until recently seen or spoken to another patient with hypoparathyroidism.
I had spoken to my parents who were my primary carers. Endocrinologists and doctors were the other people with whom I dealt.
But at no point did I have this conversation with somebody that felt the same way, knew the disorder intimately and was able to have true empathy for its effects.
The ability to have the conversation with somebody who knows what the condition is and how it affects a person was a godsend, a moment that will remain unforgettable.
Up to that point I felt completely isolated and at times prone to a touch of depression.
Why?
You would think that being surrounded by loving family and friends that it would be easy to handle having hypopara and that familial support would lend itself to you feeling better about your chances of fighting the disorder.
That is true to an extent. Familial support is important, but nobody in a family can truly share the feeling of the disorder with you unless they have experienced it themselves.
No member of my family has hypopara, you see. I have had it since birth and have grown up with the routine of blood tests, visits to specialists, periodic adjustments of doses of medication and at times panic attacks about symptoms that were not hypopara related.
I am what I refer to as ‘limited edition’ in my family and the disorder has very much shaped the lifestyle of the family during my childhood. I was one of only two infants diagnosed with hypopara at the Royal Children’s Hospital in Melbourne, Australia in 1971. What readers must remember is that around that time any treatment of infants with the condition was experimental. Doctors were only beginning to get their head around what the treatment should be for infants in order to ensure the disorder is reined in and the infant can be stabilised.
My parents went through hell. Both were learning English at the time and struggling to come to terms with the fact their newborn son had something rather odd. The medics did all sorts of tests to attempt to work out what was wrong with me at that time. I fell into at least three comas during the attempts by doctors to treat me and stabilise the condition. My parents were at one stage told that the best prognosis for me was that I would be retarded and may need to be placed in a home. So much for the medical fraternity’s knowledge of the implications of hypopara for infants at that time.
It goes without saying that I have not seen the inside of a home and my career has been nothing short of remarkable given what some individuals had forecast would be the case with me.
There were activities that were out of the question for me because of the delights of fatigue and the need to rest up as a youngster.
Sport could only really be tolerated in short bursts while other children were able to do more in the sporting department. I spent my time behind the covers of books, writing stories, learning music and writing songs.
Music
Music is a passion of mine and that was in part due to the fact my parents brought me up to learn the organ and piano. Quite apart from the cultural benefits playing these instruments actually helped strengthen the muscles in my hands and as such over the years there was less of a chance of tremors making too much of a hassle. My fingers are as strong at this time as they were when I first began to play the piano and organ.
There were therapeutic benefits to music from the point of view of exercise. It also taught me a means to deal with the isolation this disorder was going to make me reflect on for much of my life.
Nobody understood what the disorder meant. Nobody really understood why I got sick or lost my voice as a teen. It marks you as different and as such schoolyard taunting for no good reason becomes the norm.
While I have eye trouble that can be dealt with individually and partial hearing loss both of these were in some form due to the fact that my main hassle healthwise was hypopara. All of these things are interlinked, which is why it infuriates me still to this day to hear that people are being sent to individual specialists and not being treated holistically as a person with a disorder that has many different ways in which is can affect the patient.
Do I get symptoms of hypopara still even though I have had it since day one? The answer is most definitely. Forget a dose of calcitriol. I will feel that by midday. Fail to take the calcium dose by mistake the night before and I feel a bit of tingling about the face. All of these things can still occur despite me being relatively under control. I have not had to go and get an infusion of calcium at an emergency department of a hospital in years. You cannot, however, predict what changes might occur at some point that create the need to go and get a calcium boost of that nature.
Life for the current time is full and has its challenges. I have to some degree been successful in not allowing the disorder to completely dominate my life but I concede that things can be unpredictable. That’s why I am dead keen to pack as much in as I can while the going is relatively good. Who knows will happen further down the track!