Tarrbinder Singh was diagnosed with Primary Progressive MS in 2009, just as he began his first year of working as a qualified doctor. Despite not being on medication and his condition progressing significantly, he continued to work as a doctor right up until the Covid 19 pandemic. Here he talks about his pride in his home and career, and about how he became a “self-made man” after a traumatic childhood. He also explains how he copes with his MS, and tells us about the invaluable support and care he receives from people in his community.
I was born in 1981, the youngest of three children. My childhood was very eventful and at times I was really traumatised. I come from a broken family. My mother abandoned us when I was very young and I grew up with my grandparents. My cousins used to bully me and fight with me, once even breaking my arm.
I was determined to be successful, so I worked hard at school and went to study in Russia. My life in Russia was not smooth and I had ups and downs. My Dad is not wealthy so I had to support myself and was working at the same time as pursuing my studies. I was abused in the street and was once attacked. But in 2008 I obtained my medical certificate from Volgograd State Medical University.
When I was in my first year of work my boss noted I had some motor control changes. My gait was not perfect and I was not stable. I thought it might be due to lack of rest, so I didn’t pay it much attention, but later he did some MRI scans and we noticed some lesions in my brain and spinal cord. I received a definitive diagnosis of MS in 2009.
I felt broken. I felt life was not fair. I was afraid that I was going to lose my job and not have income to support my ageing parents. I didn’t want to stop working, I had worked hard to get where I was. It just broke me down. But there’s always hope and opportunity so yes, I fall, I fall and I fall, but I don’t count how many times I fall, I count how many times I stand up.
I wanted to continue working no matter what because it was my dream job. I loved being a doctor, I loved helping others. I fought with my bosses and I went against them. They tried to stop me from going to work but I’d tell them ‘I’m still okay. No, I’m still okay.’ I don’t know whether I was in denial or whether I just loved my job, but I continued and only left when COVID came.
I always believe nothing is impossible, because impossible if you understand the word is actually ‘I’m possible’. I was also telling myself that I’m not disabled, I’m differently abled, and I can still do many things. I can still talk, I can still communicate, I can still address people’s condition issues. And yes, society did not understand me, my colleagues did not understand me – they wanted a perfect candidate to replace me who is able to run and walk and jump and communicate, and do everything. Well I was not one of them. So it was not easy.
When I was first diagnosed I started on interferon-beta but it caused me many problems. Doctor Shanthi recommended Ocrelizumab and we applied for support because it’s really expensive, but we were not successful. I’m sad the government did not support me, but I look at a brighter side. I’m sure there’s going to be many treatments in the future.
I just need people to know that there are people like me. And I need pharmaceutical companies to produce drugs that can ease our conditions and restore back what we have lost in our system. Now I only take drugs to manage my symptoms. I’m taking a lot of vitamins, Baclofen for anti-spasm and Gabapentin for nerve pain.
I don’t go out very often. I feel safe in my own house, it gives me peace of mind. This house is a self-made house. I did not construct it, I bought it with a medical loan while I was at work, but the decoration, the interior designing, and the exterior designing is all my own effort. I’m happy with what I’ve achieved and proud of being a self-made man. The insurance company paid off my mortgage when I had to medically retire, so it is all mine.
I live alone. It’s something that is very, very beautiful. I’m out of chaos. I don’t have to compete with others. I give full attention to myself and I love being the way I am. I only do what I can do, I don’t go beyond that. My eyesight is not good, I’m having double vision and I can’t focus on reading because of cognitive issues. So I’ll just be browsing my Facebook and listening to music. I used to love to cook – I am a real foodie! – but I can’t do that now. I also loved gardening, so I’ll pay people to do my garden so I can watch them and instruct them.
I have plenty of social support. I have who I call ‘the three angels’. They come and chat with me and read articles to me. I eat food differently now, like a dog or cat, but when these three angels are here they take turns to feed me. One of the angel’s husbands takes me out. We go to the supermarket so I can buy the items that I need and after that we have our meal. He feeds me and I’m not ashamed to go outside and let other people see me being fed by someone else. An uncle comes once a week to give me a proper shower.
I go to Kuala Lumpur to visit Doctor Shanthi. My appointments with her are very important to hear new updates about MS. Whenever I travel I’ll get a carer or one of my friends to take me to a train station. At the station the train conductors push me onto a train and at KL Central they drop me near the taxi stand. One of my secondary school classmates comes to pick me up and takes me to where I need to go. Every time I’ll ask for a favour because I can’t do it by myself. There are some kind-hearted people.
I don’t know what’s going to happen tomorrow and I don’t want to know. What I know is I have to make now better. That’s all. What’s going to come tomorrow we’ll see tomorrow. People with Primary Progressive MS should be included in activities because this is not the end of life, we can still live. I’m sure in the future there are going to be newer drugs that have a very bright outcome.
With thanks to the MS Society of Malaysia for connecting us with Tarrbinder.