…or in my case, hear lots of it.
This is a face of someone with tinnitus.
I took this picture at 0630 Tuesday morning, not as a vanity selfie, but because I want to use it the next time another attack as severe as the last 12 days have been. So I can remember that relief does come. So I can see in my eyes that the despair will give way to calm again.
I’ve had tinnitus since 2005. I can remember the exact moment it started. It wasn’t after a loud concert or an accident or anything remarkable. My ears just started ringing and three days later, they were still ringing and getting increasingly louder. I couldn’t sleep, I couldn’t drown out the sound. Three days after that and I was exhausted and the sleep deprivation had made me feel I was going mad. For nearly 10 years now, I have no idea what silence sounds like. I often have to ask people to repeat themselves because I can’t hear everything they say. A white noise app is my bed partner, Devil’s Night Radio is streamed all day in my office and is on my home system before I even have my shoes off. I have 5 pairs of headphones/earbuds for different environments. Boeing 777-300ER is my favourite airplane because the engines cancel out the noise just enough for me to be able get lost in a fiction novel. The only time I don’t have any artificial noise is when I am on the beach with waves crashing.
I have tried nearly everything…cutting out salt and caffiene, hypnotherapy, vitamins, tranquilisers, IV lidocaine…even sitting in silence and ‘giving in’ to the noise to make it part of me. The only thing that has truly worked is to write exactly how it feels and remind myself that when it’s really bad, it’s only temporary. This last 12 days though, it was not like any other extreme episode I’ve had, and the feeling was truly terrifying. The first few days were fine, but after a week I realised it wasn’t subsiding, and the tranquilisers were not having an effect. After 9 days, I began to have very desperate thoughts, ones that I couldn’t control and for someone with my intelligence, being out of control of one’s mind is probably one of the worst experiences possible. To make matters worse, my speech became just as desperate, and paranoid, and I wrote things to people that I am so ashamed of. I could not actually understand what was being said to me and every time I read and re-read things, it became more confusing. I don’t think I know of a more terrifying feeling, and for a brief time I wondered if this is what my dad felt, which is the one and only thing in life that I am afraid of. Last night was the 12th night, and I was so convinced that it would not subside that I finally gave in and went to hospital. To admit that I was that bad was one of the most difficult things I know. Because I was so afraid that I couldn’t speak the actual words, I wrote it down in Danish and English and handed it to the doctor. Very fortunately it was a doctor who knew me (finally…a benefit of living in a small Danish town!) and understood what was going on and what to do. I was heavily, heavily sedated when I went to bed Monday night, but after 12 days of nightmares, I finally slept soundly and dreamt.
Somehow I woke up at 0400 and just as quickly as it got so loud, it calmed down and the noise has now gone back to a tolerable level. The fear is there though that it will come back and that makes me feel weak. I don’t look for pity, if anything, this is an apology to several people that have been at the other end of my irrational and illogical behaviour over the last week. I hope they will forgive me and understand how embarrassed I am to have shown such a flawed, weak and very annoying side of myself.
No one knows for sure what causes tinnitus. There are some obvious things…quite a lot of my musician friends have it. Some rather famous people like William Shatner and Leonard Nimoy got it after a loud explosion on the set of Star Trek. I’ve been to doctors and specialists in 4 countries, who all have a different theory. I’ve stopped searching for the ‘why do I have it’ and now search for ‘how to manage it’. I have decided when I go home to Kenya next month, I will reorganise the mission statement of Enkabaani to include tinnitus research, especially for children. I was 33 when the noise started for me, I can’t imagine how painful it is for a child to have it.
Anyway, my friends who know me well, know that I write a lot better than I speak, and that when I have something to say, I have to say (write) it. So thank you, my friends, for putting up with me when these things happen. Compared to the challenges and issues others have, my tinnitus is nothing, but it means a lot to me all the same that I am surrounded by people who accept me anyway.
Dear fellow tinnitus sufferers,
There is nothing that anyone can say, whether they are a fellow sufferer or not, that can make the bad times easier. We can only sympathise with each other and send wishes that it passes quickly. But you’re not alone. I’m not alone. Even when it feels like it.
Be good to yourself, in the good times and especially the bad ones. Don’t be too proud to tell someone you need their help or a hug. Don’t beat yourself up because you have it or dwell on the fact that silence will never be yours again.
Help is out there, just remember to let it in.
Noisily yours,
Cyka
Love Letters to Myself 