I have Chicken Pox. Yes, Chicken Pox. At 32 my immune system has decided to succumb to a childhood disease. And it wasn’t even my son who decided to share the love this time. God knows where I have picked this up. It is rather amusing actually. In the last four years I have managed to fall ill around this time with some not so nice things. 2010/2011 I had picked up Glandular Fever, 2011/2012 it was Scarlet Fever, 2012/2013 my body decided to take a break and this year it is covered with these itchy little blisters.
With children, apparently, this illness isn’t quite so dramatic. However in adults it can be quite severe. In my case, these little pustules have also accumulated around my larynx. ‘How does she know‘ you may think. Oh, trust me, you know! It is painful when I swallow anything and it is not the typical laryngeal tonsil type pain you have with tonsilitis or the onset of a cold. What’s worse, my airway feels extremely constricted, kind of like when I had pretty severe stenosis. Ironically I am not too concerned as it only started a few days after the Chicken Pox had decided to take hold. So my thinking is, once the illness has settled, my airway will feel less constricted again.
My airway has been a major part of my 2013, as you know. It’s not been an easy one. I think back to the entire most current phase of my tracheal odyssey and find it hard to believe that so much has happened in the space of a few months, things, an operation I was dreading more and more the closer it came. Looking back from tonight, New Year’s Eve, I am again amazed that time distorts all sense of anxiety. The amount of times I said to myself before my LTR in September ‘Oh God, if only it were x-amount of weeks or days on‘. Now, I find myself saying ‘I can’t believe it has already been three months since my decanulation’.
My time in hospital was rough, the procedure not an easy one. However, I had wonderful support, both from family and friends. My family, as they only knew about the whole current issue from a few days before it was due to happen, took time out to skype with me on a daily basis, the best support they could have given considering they are in a different country. These skype chats proved quite adventurous as I had to type while they could talk. That had not prevented them from answering with types as well.
It was the same with friends who came to visit. Some instinctively took my writing pad and pen to hand only to answer my in writing. I then had to try and gesture ‘Oi, I can hear, I just can’t speak‘. Luckily it always created a good laugh amongst us. Friends in hospital were plenty and I am still very grateful for that. I don’t think I could have managed to go through this personal hell had it not been for the many visitors coming to cheer me up, either chatting, playing games, watching films or just letting me vent my frustration or being upset.
The care in hospital as such was good. The downer I find is that once I was able to get out of bed and move around a bit, I – as most patients – was left to my own devices. If you aren’t persistent and don’t get on people’s nerves you get forgotten about. There was a point when I started thinking ‘Oh I can’t be bothered, I am just going to do this myself‘, and I did – as best as I was physically and knowledgeably able to. But, apart from the odd exception, the staff in general were lovely and did try their best. As were and did the doctors. I have been fortunate enough to be seen and treated by a team of specialists in this particular medical field who, with any luck, have stabilised my stenosis to such a degree which will enable me to live a relatively hospital-free life. I will know with a bit more certainty in about nine months.
My voice has suffered a great deal through these countless procedures over the last 12 years. Recently I heard a recording of my voice before it was damaged. I never thought I would feel quite so emotional about it. I sat there, tears streaming down my face, contemplating my loss. Also, I had forgotten what my actual voice sounded like. Sure, mentally, when you think I am certain you will always be able to hear the sound of your voice. But, to actually hear it… It was painful to do that. And yet, I had to listen to it again and again until all the tears dried up.
In January I will be starting speech therapy. My therapist has already said she is not sure as to how much my voice will improve but believes that we can get it to a level where I would be able to shout for help should I need to. That is comforting and reassuring. And yes, I know it will not be an easy journey, will probably require a lot of hard work, particularly on my part. But I am determined. And who knows, maybe, just maybe, I will one day be able to use my voice to sing again – even if it would only be in the shower, but who cares.
What do I wish for the coming year: tracheal stability. Effortless breathing. General good health. To always remember that all these hardships won’t kill me, but only make me stronger (she says). Normality. Medically, in retrospect, that’s all I want.
To all reading this, a happy and more importantly healthy new year. Thank you for being part of my life, my words, my thoughts and my strife. Know that, even though I may not say or not have said it, I am grateful to each and every one of you.