Who Is Dave?

It is near impossible to separate Dave the person and Dave the person-with-Hunter-syndrome because it is literally the basis of who I am physically and therefore to a large degree the type of person I am. If the actual physical aspects of Hunter syndrome haven’t dictated the person I am then certainly dealing with Hunter syndrome has moulded the type of person I am. 

It’s difficult to imagine who I’d be without Hunter syndrome because I have nothing to compare it to. I have always been me and I was born with this disease. I may not have been diagnosed until later in life but diagnosis was just putting a name to a medical condition I had already been living with for almost 20 years.

I’m quite shy. I’m not sure how much of that is due to the teasing and cruelty I faced at school and how much is just my personality. I am extremely self-conscious, but I think I have fair reason for that.  I guess one of the advantages of having less and less peripheral vision these days is that I don’t see as many people staring at me when I walk down the street!

It would be fair to assume that by now I would have worked out a way to deal with people looking at me, but I haven’t. Sometimes I smile back at them as they quickly look away or I will give them a dirty look, depending on my mood at the time but every time I see or ‘feel’ someone looking at me it hurts.  It’s a feeling I don’t think I will ever overcome or get used to. I have, however, learnt to not let it rule my life. Yes, I avoid certain situations if possible but I don’t let it prevent me doing something if I really want to - it just makes mixing with people that much less enjoyable. 

I’m an easy-going person. I’m sure family and friends might argue that point at times but generally I try not to let things get to me too much. In that sense, I am also fairly accepting. Although I still worry about some things, I tend to accept them as they happen, especially health issues. They are things that I have no control over so there is no point throwing my hands in the air and asking ‘why me?’. 

I’d like to think over the years I have become a more tolerant and patient person, especially in more recent times. If I’m right, it’s thanks to the multitude of doctors’ appointments I attend, and of course, my weekly Elaprase infusions. My attitude now is to accept everything is going to take as long as it takes and there is no point stressing about things I can’t control. Maybe some of that tolerance and acceptance is due to me being a ‘thinker’. I think just about everything through in my head. Or maybe it is a way of preparing or protecting myself, I don’t know.  It could even be because I’m a loner. I don’t have anyone to answer to, but nor do I have anyone to share with. 

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I always find it difficult to answer when someone asks how I cope with the challenges I have faced and am likely to face in the future. My usual response is a shrug of my shoulders and a standard response of ‘I just do! I don’t have a choice’.

But it’s definitely something I think more and more about these days and here’s where I’m at (nothing too enlightening or inspirational I’m afraid!).

I have never had to make a conscious effort to accept the challenges my life throws at me – I just do, because that’s who I am.

Most mornings when I wake up, I think  ‘okay, I’m alive.’ And that’s always a good start.

Then I open my eyes and I can still see. That’s another positive. 

 Then I get on with the day, dealing with whatever life decides to throw at me along the way. Whatever I have to deal with in the future doesn’t faze me too much as I know I will somehow manage it quite simply because I won’t have a choice.  I know if my health deteriorates or I lose all my eyesight, I will find a way to cope. It’s not like I can say ‘no thanks, this isn’t for me – I want something else instead’.  And there’s nothing I can do to halt or significantly improve my condition.  I have found along the way accepting or dealing with things you have no say in is actually easier than trying to deal with making decisions to try and change inevitable outcomes. 

 It’s not the things that I have no control over that I find hard to deal with, it is actually the things that I do have a say in that I find most challenging. But hey, that’s just me! 

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I accept my limitations without using them as an excuse.  I accept them and plan an alternative, more achievable and comfortable way of doing things.

For example, when I travel I plan ahead. I make sure I arrive at my destination in plenty of time before it gets dark. I research the place that I am going to. I find Google Earth is great for this. I can use the ‘Street View’ mode and actually see and become slightly familiar with my destination before I even leave home.  To a lot of people this may seem over the top, but for me it is a necessity. 

 As my eyesight deteriorates I am learning to adapt with it. They say necessity is the mother of invention and it’s certainly true in my case. 

Once when in Sydney for a medical appointment I stayed at the motel I normally do but in the time between visits my eyesight had obviously changed.  While not being poorly lit by any means, the lighting in the corridors is still not the best, as is the case with most public places. I used the torch app on my phone to find the slot for the key card to open the door to my room and again to find the light switch once I entered the room. The lightbulbs are those environmentally friendly kind that take ages to reach their full brightness. They might be environmentally friendly but they certainly aren’t vision-impaired friendly. The cupboard tops were all a dark woodgrain which meant that when I put my wallet and phone down on the bench I struggled to find them again. So, I set my mind to the problem and decided I’d put my things on a white piece of paper on the bench. Problem solved. 

It would be easy to let all those little challenges – which when added up become one big challenge – deter me from going anywhere, so I try to focus on a positive result. I definitely take more pleasure from my accomplishments these days, no matter how small they might be.

But of course there are some things I just can’t find a solution to, but I try not to dwell on them because that doesn’t do anything except make me miserable and I will not let myself become an unhappy person. 

There are things we all wish we could do but can’t. I tell myself there are millions of people who wish they were rock stars or racing car drivers or could even just play an instrument or paint like an artist. But they don’t let those feelings depress them, they just wish they could achieve them!

I take the same attitude - it’s just that some of the things on my wish list are a little more basic and things that most people would take for granted. Like going to the cinema.

 The last time I went a few years ago I didn’t enjoy it at all.  After almost tripping up the stairs I was ready to turn around and slink out of there. And those stairs were just in the foyer. I broke out in a cold sweat wondering how I would manage to negotiate my way to the theatre, let alone a seat. But I pushed on and stumbled my way to a chair. Not long into the movie though I discovered another problem.

My field of vision. Because I only have central vision in one eye I was unable to see the whole screen. I was having to turn my head from side to side to try and follow the action or to find which character was talking. As a result I have taken going to the movies off my list.

Another thing I miss is night time. I used to love city lights twinkling in the inky dark sky at night. Coming over the crest of a hill and seeing the city lights below is a sight that should never be taken for granted. But unfortunately I can no longer see it. I can’t see stars anymore either.

Sometimes if I turn my head and look a certain way I can sometimes catch a slight glimpse of light, but not individual stars.

Driving is another pleasure I’ve had to give up and I miss it.  I used to love driving. Yes, I was a bit of a rev-head in my younger days. I sometimes miss the convenience of having a car but again, there is no choice, so I don’t dwell on it.

Don’t get me wrong, there are times I think about my wish list and all the things I’d love to be able to do again, but generally, I just accept my limitations.

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I have fairly simple tastes and I live a simple life. I am a bit of a homebody and I don’t mind my own company. Having said that, my biggest torment is being single. I came to terms with not having children years ago and to a degree I have similarly accepted that I will most likely remain a bachelor. I have to say, it’s a bitter pill to swallow.  I certainly had my share relationships when I was younger, but it seems now I’m older, finding someone special has become nigh on impossible.  

If I had to prioritise my wish list, finding someone to share my life with would be number one. Even so, I’m not sure if anyone could put up with living with me anyway because I’ve been single way too long. But living the rest of my life as a bachelor is not exactly an inviting scenario to me.

Here’s a piece I once wrote to the women of the world. 

       Some of the reasons I am such a good catch.

 I’m not tall … YOU get to be taller than someone.

My hearing isn’t the best … YOU don’t have to be behind my back to talk about me.

I’m going blind … YOU don’t have to worry about looking your best for me.

I don’t have a driver’s licence …Think of the money we will save by staying home.

People will look at me when we go out …YOU can pretend you’re the centre of attention.

I might struggle with some everyday things due to bad hands and stiff joints and muscles … YOU get to feel useful.

Although it was written tongue in cheek, sadly, it’s all too true.

Add these little clangers to the list – I live with my parents, I can’t see in the dark, I have weekly ERT, and, the list goes on.  While I know deep down none of those things should matter, the truth is that they do. Running through them also makes for a very difficult first conversation when asking someone out!

I realise how fortunate I am to be an adult with Hunter syndrome and can still do everything on my own. But the down side of that is being an adult with Hunter syndrome and having to do everything on my own.  Don’t get me wrong, I have a wonderful, loving and caring family but as a single guy, I don’t have anyone to lean on or share the day-to-day ups and downs that life throws at us. I attend all my appointments alone. The trips to Sydney for my ERT assessments. My treatment each week. 

It’s the way it has always been and for the most part I am perfectly fine with that, but now and then it hits me just how alone I am. I think that is probably my main concern for the future. It’s not so much a medical problem that I fear but the loneliness of having to deal with it alone. Those sorts of fears do creep into my thoughts from time to time but I refuse to wallow. I know how lucky I am to be able to be so independent.  

But there are some positives to being independent. You only have to think of yourself.  You can eat what you want, when you want. Go where you want without having to consider anyone else. And at times I really enjoy my trips to Sydney. There is a certain sense of accomplishment and confidence in thinking, ‘wow I did that on my own’.

It truly is amazing what you can do when you have to. In 2004, I travelled 12 hours alone by train from Grafton to Westmead and attended pre-op appointments, before being admitted to undergo major surgery on my neck.

Laying there waiting to be wheeled down to theatre I realised how much easier it was being the patient than the family of the patient. It was simple for me. I just had to have faith in the surgeons. I would either wake up after the operation or I wouldn’t. My parents travelled down on the day of my surgery and were there when I woke up. It was my family and friends who had the tough gig. They were the ones facing the long wait to see if the operation was successful or not.  I slept through it all.

Looking back now at past experiences I find myself thinking how difficult some of the things I’ve done sound in retrospect. But they had to be done and so I got on and did them.

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When it’s all said and done it is really about dealing with what life throws at you each day. Whatever it may be. Good or bad. We all just have to get on with living. The alternative isn’t an alternative at all.

Of course there are times when I wish things were different. When I wish they had a cure for MPS. But if it wasn’t MPS there’s every chance I’d be suffering from something else. I don’t think there are many people who get through life unscathed. Whether it be medical, physical, psychological or something else. We each have our own road to travel in life. Mine just happens to be one that is less travelled and has a few more twists and turns than most.

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One of the big questions I grapple  with is ‘What is my purpose?’, as in, ‘What is my purpose in life?’.

I’m not a religious person, but I do believe things happen for a reason. In the last year or so I have begun to think my purpose might be to offer hope to others facing similar challenges to me. I don’t know. But for now that’s what I’m focusing on. If another reason materialises in time to come, well and good.

 Part of the reason I’m looking for a purpose is possibly a selfish one.  Without any children, I guess I am looking for some sort of legacy to leave behind when I die. Hopefully I have a while yet to work on that. 

I guess that's why I decided to create this website.

Actually there are a few reasons behind it. One is to bring awareness to MPS and in particular,  Hunter syndrome.  I’m hoping people who have never heard of MPS can learn a bit about it and the impact it has on sufferers.

 Another reason is to tell the story of someone who lived to adulthood despite having a life-limiting disease that all too often takes the lives of children. As ERT and other treatments are further developed and become available, it is hoped that more and more people with MPS will live well into adulthood and stories like mine will become more and more common.

I want my story to offer hope and positivity to newly diagnosed patients and families, because at the moment a diagnosis of Hunter syndrome has little or no positive aspects.  

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Another reason is to share my photography. To hopefully spread a bit of beauty and niceness. 

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Living with a disorder that is for all intents and purposes a terminal illness, I sometimes feel an obligation, a pressure to live each day as if it were my last. That I should be creating a bucket list and ticking things off it left, right and centre.  The fact is that we all are terminal. We all have a ‘use-by date’. Maybe I just have a ‘best before’ date as well. 

None of us are assured of a tomorrow. Nobody is guaranteed they will journey through life untouched by illness or disability. I have given this much thought over the last few years. Maybe my life has become stagnant. Maybe I just settle for what’s easy. Maybe I’ve become boring and enjoy the mundane but I’m not unhappy with my life. 

I’ve never had any great desire to travel overseas or climb Mount Everest or swim with dolphins. Possibly part of the reason I haven’t is because I don’t have anyone to share adventures with.  Or maybe it’s my simple tastes making me content with achieving much simpler goals.

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I honestly believe if we lay down to sleep at the end of the day without regrets then we are living life. And for me, if I can wake each day and I still have some eyesight then today is going to be a good day too.

I’m confident when I say that my positive outlook on life stems from the way I was brought up. I know how blessed I am in being able to look back and say with the greatest sincerity that I had a storybook childhood, nestled in the love and comfort of a close, loving family.