It’s impossible to decide what I miss most.
As a die-hard Chelsea fan, I miss my regular trips down to Stamford Bridge to watch my team play. For a while I was able to manage the journey and all that went with it on my own, but gradually the pile of unused seat and train tickets began to pile up, and I came to the inevitable conclusion that I was throwing good money away, which wasn’t fair to my
family. That’s not to say I won’t ever make it to a game again, only that it will most likely be a last minute arrangement.
As someone who has loved both listening to and playing music since before I reached double figures, the loss of hearing and especially tonal disruption means I can’t enjoy music as I once did. I still listen and I still play, but nothing ever sounds quite right anymore, and I do miss appreciating the difference.
Although I hadn’t been a social animal since my mid-twenties, I did enjoy a night out with friends, family gatherings, special occasions, etc. These days it’s not so much a case of them never happening, more that they don’t happen anywhere near as often. Nor can I enjoy them in the way I did before my illness, due to the way disparate noises affect me. This is caused by something known as hyperacusis, and it’s almost impossible to explain to people who don’t have it. I can assure you, however, that if you do suffer from it, you have to steel yourself against even everyday sounds, let alone the myriad noises you’ll find in pubs, restaurants, etc.
I miss the sound of silence, too. Tinnitus, at various levels between harsh white noise, rhythmic pulsing, and loud and high-pitched screaming, has been a constant companion for a couple of decades now. At times I can tune it out, and on other occasions I’m able to tolerate its presence, but it is always present and therefore the world is never silent.
In so many ways I miss the confidence I once had. The confidence that I could walk in a straight line and not be thought drunk due to my permanent imbalance; the confidence to take a walk on my own without the fear that the next time I have a drop attack, a concrete surface might be waiting for my head rather than the various objects and carpeted flooring it has smacked into at home; the confidence to face each new morning without wondering if this was the day it started to deteriorate and snowball all over again.
I perhaps fear the last issue most of all because the upside to this condition – which I have come to learn is an extremely individual experience – is that it did stabilise for a long time. My bad vertigo attacks were reduced to perhaps a dozen or so a year, the milder variants once or twice a week, which was so much easier to cope with than the long and drawn-out initial daily episodes. It was that relative stability that provided me the opportunity to learn how to manage the permanent imbalance those many attacks left me with. Not so much that I never stumbled or lurched in a direction I hadn’t intended taking, but enough that on most occasions I could fool people into thinking nothing was wrong. My hearing loss also levelled out to a certain degree – certainly its decline was arrested somewhat, and the Reaper might well claim me before total deafness does. Most tellingly, my condition became more predictable, which was the real golden ticket. And it stayed that way for a number of years.
Until a couple of months ago. That was when I was forced to establish a new baseline. I noticed that I had started to feel unwell more often and for longer periods again. The decline became more obvious, and therefore extremely worrying. It got to the point where I began to wonder if it would level off as it had before, or continue worsening each week until it became fully disabling. Fortunately, I’m happy to report that it seems to be the former. It’s worse than it was before, but not so bad that it’s had a dramatic impact on our lives.
And here I use the word ‘our’ deliberately. Because this has not been a solitary journey, and I am not the only one to have been affected by this illness. My daughter was 16 when I first felt my symptoms, and so my wife and I were able to shield her from the worst of its initial impact on our lives. But she knew about it, and she worried about me. Understandably so, she couldn’t help but wonder how much worse it might get. That’s so much more than I would have wished upon her, but of course we all recognised that it could have been so much worse. I could have had the most awful news from that original MRI, or the condition I do have might have disabled me more fully. So she didn’t escape unscathed, but I believe the experience left behind no scars.
My wife, of course, bore the brunt. It’s a bit like going through the grieving process, because although nobody died, the life we had, and the life we were looking forward to, was lost to us. It changed our lives in more ways than I care to count. But we both laughed and cried our way through it, we mocked it, laughed in its face, and the more it bit me the more we bit back. For a long while it was our primary focus, but learning to accept the restrictions this illness brings, and adjusting your life accordingly, are both absolutely necessary if you’re going to strive for anything resembling normal in your future. And you simply must. You cannot let the bugger win. So we’ve had our dark days, but we’ve also had sunshine. I guess at the beginning I might have asked ‘why me?’ but why on earth shouldn’t it be me? Rather me than my wife or daughter, that’s for sure, and why would I consider myself special enough not to have anything wrong with me? You can’t afford to think like that, and if you do then you must not dwell upon it and allow it to drag you under. No, as far as I’m concerned, the key to having a positive mental approach is recognising the fact that I’m still here, we’re still together, we have a roof over our heads, food in the fridge and cupboards, our daughter has gone on to achieve great things in her career, and after being made redundant and my wife suggesting I take my writing seriously again, in September this year I will see my eighth novel published.
Meniere’s hasn’t won. And it won’t. Whatever happens now, however bad it might get in the future, I was able to work with it, I’m now writing with it, my family are happy despite it, I still have good friends and a supportive family, plus I now have a whole bunch of new friends and supporters who are loyal readers and have become an important part of my life. Compared to what might have been, I’ll happily settle for that. You bet I will.