Diagnosis

 

Back in 1998 I was playing in this mixed social comp called Action Ball (basically indoor netball) and I noticed I was tripping over my feet by the time we got to the fourth quarter. It sponsored a comment from Michelle, “Gee – you fall over a lot, maybe you should consider seeing a doctor.”

 So, I dutifully went to the doctor and described the symptoms I was experiencing. He later said that he had immediately suspected MS, but at the time sent me for a number of tests. The whole diagnosis journey is just that – a journey. I was referred for these tests over a period of about 12 months including CAT scan, MRI, EPMT and a Lumbar Puncture.

 Allow me to digress as I give you an anecdote about my Lumbar Puncture. During this test, a sample of Cerebro Spinal Fluid (CSF) is drawn from your spinal column using a hypodermic needle. Apparently according to nursing 101 it is crucial that the patient remains lying completely flat after the procedure. Unfortunately, the nurse’s aide trainee in the recovery area had not got that particular memo and sat me up completely in the bed. So, when a more senior nurse came by and checked the chart on the end of the bed she visibly paled and quickly laid me back down. I had a suspicion that I should have remained supine, so I asked the nurse what would happen as I had been sitting up. She answered in a rather uncommitted tone, “Oh you may get a bit of a headache…” 

 A bit of a headache! That was the understatement of the century as for the next two weeks I experienced the mother of all headaches that left me bedridden. Apparently as CSF has been drawn from your spine, the puncture wound needs to heal over and due to gravity, the remaining CSF pulls down if you are not completely flat and irritates sensitive tissues in the brain. Whatever the reason – it really hurt.

 All these tests, and I only ended up with a provisional diagnosis – I had symptoms consistent with MS.

 Apparently, clinicians are notoriously reluctant to give a clinical diagnosis for MS. As a result, there was no specific revelatory moment when I was told that I definitely had MS. By this time, I had done a lot of independent research on the symptoms I was exhibiting and had already drawn the conclusion that it was most likely MS.

 My reaction? Well, to my chagrin, my initial reaction was more stoic than truly spiritual. After all, I was still only 35. I could walk albeit with a slight limp. I was still able to play the guitar and sing. And I was plying my trade as a firefighter (I loved my job!). Also, around 85% of all MS diagnoses are for Remitting – Relapsing MS (RRMS), a comparatively milder form.

 I was hoping for that one.

 But as my condition continued to deteriorate steadily but slowly without any remissions it gradually became clear that I had Progressive MS (PPMS). I had drawn the short straw.

 It was not long before I lost the ability to play the guitar as dexterity in my left hand was an early casualty. Further, it wasn’t long before I declared to the brigade that I had MS and asked to be withdrawn from operational duties – this was 1999 and very hard for me to do but as my mobility was deteriorating quickly, I had to voluntarily step aside before I compromised the safety of my crew.

 I remember around that time going to a church camp where I announced to everyone my provisional diagnosis – all I asked them was to take care of Michelle – thinking back that was a trifle melodramatic – even so I genuinely appreciated their concern and prayers for me and Michelle. There were a number of tears. It is so comforting to be a member of such a faith community.

 By 2003 my walking had become so iffy that I started to use a Segway to get around (this was actually cool and delayed my move to a wheelchair for some years).  Looking back, I was probably in some form of denial – I just refused to believe I would get much worse as if somehow by stubbornly not thinking about it, I could prevent it from happening. A somewhat puerile approach.

 With the older boys hitting their teens, and Lachlan still a toddler, I could never have imagined that I was gonna end up totally reliant on Michelle for just about everything. It was only later when I started to become more seriously disabled that the reality started to bite.

 I do remember the time I shared my diagnosis with mum and dad. Dad’s eyes teared up (I still think he was one of the nicest men that has ever lived). It was only later that I found out that he felt to some degree responsible for passing along the genes that must’ve contributed to my condition. He even apologised to me. He’s gone now and I miss him almost every day.

 I remember too the reaction of friends in the Brigade – they were confused even a bit angry. “But why you Gaz?” (I was well known as the God botherer). “You don’t go out drinking, you don’t smoke, you talk about your wife like she is God’s gift and yet you’re the one who gets this – you must be pissed off at God.”

 I wasn’t and I can honestly say I never have been. He is the only one who could do something about it if He chose to. I suppose I could understand their attitude if this life is all there is – but I firmly believe it’s not.

 Ironically it is the MS and this wheelchair that has given me an opportunity to talk to people in a way that is fairly unique. In a similar way that women are more likely to speak to you when you’re pushing a pram or carrying a baby, the wheelchair and the obvious disability seems to disarm people’s defences and somehow gives me license to speak at an unexpectedly deep level, especially if they see me smiling (which I apparently do a lot). I think it arouses their curiosity – what have you of all people got to smile about?

 The reason for my smile is hope – can I tell you about the reason for my hope?