Just a guy with MS

I’ve been called a lot of things in my life.  Some I could even repeat and once I even got called Sir!  On a regular basis I get called Dad, Hun and occasionally Mr Sparrow but today I was called something I never thought I would be.

Let me provide a bit of back story first.

As part of my MS medication I get regular MRI’s, Doctor’s appointments and visits to my Neurologist.  This is all to monitor the progress of my ‘lovely’ disease and to see if the drugs and the MS are playing nicely together.

The great news is that, according to the note from my Neuro, “I am pleased to report a reduction in several of the MS lesions and no significant increase in lesion numbers.”  This is absolutely huge and after the drama of the last couple of weeks it was a truly welcome letter to receive.

The first six months on the drug have been really tough.  I’ve struggled both physically and mentally.  One of my liver functions has been close to three times the acceptable limit and I’ve battled the fatigue harder than ever before.  But you know what?  Getting that letter just after my friends passing really, really lifted my mood.  There have been times I just wanted to throw the pills down the loo and bugger the consequences.

In my body it feels like I have turned a corner and the last six months has been worth it.  And at roughly $100 per pill I think it is a bit unfair on the taxpayer for me to flush them down.

So, as you can imagine, I was in quite a good mood while they were pushing and prodding away at me today and we got talking about what I had been up to since I was last there.

A couple of different things came up in the conversation.  The first was these little articles that I write and how I am trying to raise awareness of life with MS.

The second was about a call I received out of the blue a couple of months back asking me if I would speak at my local MS societies support meeting that very night.  I was completely taken aback by the invitation and had no idea why they were asking me.  Sure, they had printed a couple of articles I had written over the last couple of years but why me?  I’m just a guy with MS.

Here was me prattling on to my Neurologist and her willing aide this morning about speaking that night and I was very politely interrupted “they asked you because your attitude and the way you live with MS is an inspiration to others.”  I blinked.  “No, seriously Glenn the way you approach your disease is a real inspiration, particularly to people who are newly diagnosed.”  I blinked again.  There was that word again.  “Inspiration”.

This is not something I ever thought I would be called and I certainly had never thought of myself as an inspiration.  Being called Dad and Hun are the biggest accolades I could wish for in life, but being called an inspiration by someone I have a huge amount of respect for blew my mind.

The thought has been bubbling away in my mind all day and the reason I am telling this little story is not to blow my own trumpet,  to be fair I think I’m still in a bit of shock.  No, the reason I am writing this is to challenge you.  And, like the good old Uncle Sam poster, I am pointing my finger at you!  I’m no-one special, just a guy with MS, BUT if I can learn to live with it in such a way that I can be told I’m “an inspiration” – what can you do?

Everyone is different and we all deal with things in our own way.  Inspiration is all around us and we just need to be open to it.

Written 27/10/15


Today I lost a good friend to suicide.

Today I lost a good friend to suicide. I wish I wasn’t writing this post about suicide, but I am.

I met a lot of people over my lifetime and to be honest I’m not the best at making friends. I tend to keep people at arm’s length. That’s why this death has hit me very hard. We have been friends for over ten years and have always been there for each other. He was there for me a lot when I was first diagnosed with MS.

My heart aches at the thought that he didn’t reach out to me in the last few weeks to tell me about whatever was going on in his life. I don’t know what he was thinking, or what (if anything) triggered his need to take such drastic action.

When I was first diagnosed with MS I got very depressed and did contemplate suicide. I remember driving to Dunedin one day and all I could think about was what my future might bring. In my mind I imagined my son and wife standing beside my bed and I was in a virtual coma, unable to respond or even to tell them how much I loved them. On that day I know I was close to steering into the path of an oncoming truck.

My friend and I caught up a few days later and over a couple of beers we talked, well I talked and he just listened. I will miss his ability to listen.

But I had no idea of his pain. I still don’t. In some ways I am grateful that he is no longer experiencing his emotional pain. The hard bit is that those he has left behind are now in pain.

Depression is a horrific disease and the worst bit is most people are too afraid of the stigma associated with it too ever speak out. Like all invisible diseases it exists but is not easily understood by others.

Ironically I read on the MS website for New Zealand yesterday that suicide is the number one killer of men with MS.

Please, please, please if you are struggling with depression or pain reach out to someone. It could be family, a friend, a co-worker or your Dr. I don’t care who it is – I don’t want to write a post like this about you.

Yes, this is a brutally honest post and some people may find it hard to read. Many a tear has flowed down my cheeks as I have written it.

Tonight after my son is in bed I will sit on my deck with a glass of whiskey and raise a toast to a good friend who I will miss dearly.

Written 15/10/15