The power of listening in: Tommi’s inspiring story of reinvention
 
In short, superficial siderosis (SS) has forced me to reinvent myself late in life. Let me explain by putting it all in context.
 
A little bit about my life before superficial siderosis
 
I am Tommi Muttonen, 59 years old and I now live in Tring, Hertfordshire, after having lived most of my life in London. Indirectly, my superficial siderosis story started back in 1980 when as a 14-year-old I had a serious skiing accident in Switzerland and was helicoptered to hospital with a head injury. I recovered from the accident but check-up scans discovered an unrelated brain tumour which was mainly removed later that year – a small inoperable part was left.
 
The tumour was a benign astrocytoma on the cerebellum and doctors felt the small remnant was not a risk. Story over – or so we thought.Fast forward 15 uneventful years to 1995, when as a 30-year-old, I started noticing hearing loss in my right ear. My left ear was still fine so I ignored it. By the early 2000s, it was getting pretty bad so my wife encouraged me to get it checked out, which eventually resulted in 2 things: my SS diagnosis in 2006 and news that the tumour from 1980 had started growing again.
 
Everyone assumed that the SS had been caused by the skiing accident or the subsequent operation to remove the tumour. I disagreed and suggested it was the tumour itself which was bleeding. Eventually, they agreed with me and in 2012 there was another operation where they found the bleeding tumour, removed it (mainly) and hopefully stopped the bleed. A later lumbar puncture found no fresh blood, so we assume the surgery was successful.
 
Due to the lack of fresh blood, I have always been denied Ferriprox.My symptoms have slowed me down but not stopped me. My deafness and mobility/balance problems had set in by then and have not improved since. I have profound hearing loss in one ear and severe in the other. I make do with an NHS hearing aid and as yet, do not have a cochlear implant.
 
I walk with one or two sticks depending on the risk. I took a fall a few years ago and broke my hip so I am very careful.I generally avoid going out and due to the deafness, my social life is almost non-existent. Having lived in London most of my life, I moved to Hertfordshire where I live a very quiet life with my partner. I still work, but fortunately 100% from home.
 
Superficial siderosis and my career
 
I have always worked in sales in the private education sector, mainly in the international sector so plenty of overseas travel and sales activity. I progressed to Sales Manager level. Eventually, various senior managers began to question my ability to continue with this role especially due to my deafness (because they wanted me to be constantly on the phone). There were jokes and offensive emails and eventually, I was made redundant. No attempts at adjustments or finding alternative roles. I took legal advice and was told I had a very good case for unfair dismissal (I had copies of very offensive emails about my disabilities) but for a number of reasons which I will not go into here, I didn't.
 
With a combination of redundancy, disability and divorce, I decided to leave London behind and move to a small market town in the Chilterns: Tring.
 
The impact of finding the right employer
 
Eventually, I found a new job in the public sector (the one I have now). It is perfect: it's largely administrative, I work from home so no commuting which I would not have been up to, and communication with colleagues and clients is either by email, Microsoft Teams Chat, or Teams Calls with closed captions. I am also able to use Teams to call normal landlines and mobiles and still get closed captions. It has been a real game-changer.I also have the Live Transcribe app on my phone so on the rare occasions I have to go in, I use that for “portable” closed captions.Closed captions are by no means perfect but they have extended my career. I do not doubt that if I didn't have this public sector job, I would have been forced to call it a day with work. The same goes for working from home.
 
Commuting would have been a nightmare and once I had got in I wouldn't have been able to hear anyone anyway! At home I can just get down to it without any of the distractions of office life and I feel my days are 50% more productive than before.The job however is much less senior than I am used to, and clearly the pay is lower (though my costs are also lower) but the bottom line is that SS has restricted my professional development.
 
This is what I meant about reinventing myself. Never in a million years would I have imagined myself as an administrator working from home in the public sector and living in a sleepy market town. But eventually after redundancy and deteriorating SS symptoms, I was forced to accept that I couldn't go on as I always had. It was quite a scary moment, but 3 years on, seems to have worked.
 
Help along the way
 
Early after my redundancy I contacted SCOPE and joined their Support to Work scheme which aims to help disabled people search and apply for the right jobs. I was given 10 free sessions with a counsellor where we discussed the challenges to work caused by hearing loss and limited mobility. These discussions started me on the journey which led to my new job.My counsellor also stressed the importance of not hiding my disability (as I sometimes did in the past) and discussing reasonable adjustments early into my new job. With the help of a proactive line manager, I then received all the technological assistance for my hearing loss, as well as ergonomic furniture for homeworking.
 
My advice for anyone worried about their future or their career
 
I suppose the main thing is to accept what we can and cannot do. I think for a number of years I tried in vain to be the salesman I always had been. In the end, a crisis forced me to accept the change but in hindsight, I am relieved it happened. I have lost income and status but am in a far more comfortable place professionally and privately.Secondly, do not hide your disability! Your bosses have a legal obligation to confront it and give you access to the reasonable adjustments that you need. Working from home and the use of closed captions have been a game changer for me and extended a career which I feared was over with redundancy 4 years ago.