Had I Known Then What I know Now by Simone Mazin

By January 4, 2016Disability, Lifestyle

I am a happily married Essex girl with two gorgeous children. I am 44 years old. I spend most of my time trying (and often failing) to juggle work, family life and housework. I drive too fast, am always on a diet and am known amongst my friends as being a bit of a scatter brain.

And I am my husband’s carer.

Oh sorry. Did I forget to mention? My husband is blind (or Severely Sight Impaired to use the proper term) and the proud owner of a Black Labrador Guidedog called Gibson.

To give you a bit of background information, my husband was diagnosed with Usher Syndrome – a rare genetic disorder – when he was 14 years old. The main symptoms of Ushers are hearing loss and Retinitis Pigmentosa (RP) – a disease of the eye that leads to loss of vision and blindness.

I think my husband would agree, the journey from that initial diagnosis and where we are today has been far from easy.  Being a teenager and being told you have a degenerative disease that means you will eventually lose your sight and hearing can be devastating. People tend to deal with this kind of news in different ways. In my husband’s case, he mostly chose denial. For years he was able to fool an unsuspecting public that he was able-sighted and most definitely NOT DISABLED. Working and socialising in London, he managed to live a fairly ordinary life; only occasionally walking into bollards, knocking over passers-by and getting run over*.

But RP is a mean, fucking bitch and as predicted, his sight started to deteriorate and walking through Liverpool Street unaided during his daily commute was no longer feasible. My husband registered as being SSI, I become his carer and five years ago, Gibson came into our lives.

Being your partner’s carer is an interesting role and something that’s taken me a number of years to perfect. I’ve had to learn stuff. And fast. There’s a whole host of facts about my husband’s condition on the internet but it’s often ‘worst case scenario’ kind of stuff. And as much as I personally would welcome some easy to read information, I’m not sure if there’s a gap in the market for a Retinitis Pigmentosa For Dummies reference book

Back in the good old days, I would often get my role as carer wrong. Grabbing my husband and yanking him back when I could see he was about to walk into something or someone was most definitely wrong. But not reacting quickly enough and allowing him to be ‘attacked’ by some low hanging branches was also not exactly helpful. And those that know my husband would agree – he can be a stubborn bastard. Particularly in the early days when he was desperately trying to convince the world he was A Normal.

I have to be honest, when I was single and compiling my wishlist of attributes I wanted for my future husband, having a disability wasn’t exactly high up. Admittedly, whilst living with somebody who has a disability can have some benefits (our blue badge has helped us get some wicked parking spots), it can also be a massive pain in the arse.

Don’t get me wrong. I love my husband – almost to the moon and back! However, it is exhausting having to carry out a mental risk assessment every time you leave the house, tedious to explain to acquaintances that the reason my husband ‘blanked’ them was because he didn’t see them, not because he is rude and genuinely upsetting when my husband walks into something and hurts himself.

The nature of my husband’s condition means there is a high probability he will lose his sight completely in a few years. This is the point where I happily bury my head in the sand. As deep as it will go. If I allow myself to think about this fact for too long and the consequences for my husband and my children, I wouldn’t be able to cope.

So we live our lives, taking each day as it comes and try to enjoy each and every moment. To quote a quote I once found on Pinterest: “Every moment we spend worrying about tomorrow is a moment we lose from enjoying today.” Pretentious? Yes. True? Absolutely.

So what would I have done if I had known then what I know now?

I honestly wouldn’t have changed a thing.

 

 

* Getting run over was a very rare occurrence thankfully. But it did happen. On more than one occasion.

Join the discussion 2 Comments

  • Gabrielle says:

    So well written and honest. Great to read things from a carer’s perspective. More writings from SImone please!

  • Helen says:

    Simone. Thank you for letting me read this and have an insite into your life. It just show (nearly quoting another quote) that you really don’t know what the next person is going through. I am also a carer for my dad who has Parkinson’s to help not only to help him but to help my mum too who is his main carer. I can definately relate with the ‘mental risk assessment’ comment for whereever you go. I know it’s not easy but as you know we always do what we can for the ones we love. p.s. I think you’re doing a grand job. xH

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