Greta Gurklyte, Project Administrator
It has taken a lot of time for me to admit to myself that I have acquired a disability and five years ago there is no way I thought I’d be writing this but let’s start at the beginning …
I was diagnosed with Multiple Sclerosis (MS) on 23rd February 2009. My disability was initially invisible, the only visible issue was my leaky bladder! As the years went on my disability progressed, I developed drop foot, then I developed both drop feet and so my mobility got worse. I then experienced tremors, my legs would go into spasms and I started experiencing fatigue. Initially I thought I was feeling lazy but when I started to fall asleep while I was talking to people or when I was taking my make up off, I realised that this is indeed, real.
My health deteriorated so much that I needed to use a walking aid as the ‘furniture walking’ just wasn’t working for me anymore and I had quite a few falls. This in itself led to me withdrawing from social activity. I could feel the shutters beginning to close and the life I knew changed forever.
Fortunately, with the support of others, I began to work on the ONSIDE Project in July 2019 and guess what happened on my first day? I fell!!! You could not write it. It was extremely embarrassing as I couldn’t get up, it felt like my muscles just locked and I can’t do anything about it. That was my worst nightmare. The only saving grace was that my employer, Disability Action and colleagues were extremely understanding and helpful.
In 2021 I attended an ‘intensive inpatient rehabilitation’ in Musgrave Park hospital where a Counsellor asked me if I would like to go for a coffee in the main hospital and my answer was ‘No’. I just didn’t want to go anywhere and didn’t want people to see me. Then she asked me if I am ashamed of my disability, and I realised that I was. I suppose nobody had asked me this before. Shame, and the fear of embarrassment are so strong for disabled people that it can create a self-inflicted social isolation.
I’ll be honest, when I started using a walking aid I stopped going out to socialise or shop. I started to shop online and chose only close friends with disabilities to meet up with. I was just sick of people looking at me and asking what happened to me or if I needed help. I started to despise travelling too because I need assistance through bus and train stations and airports … the idea of using a wheelchair is still one of the scariest things for me. I was independent all my life and the fact that I now need support really upset and hurt me.
So what I am saying is, when COVID hit, disabled people like me were faced with a double dose of isolation – the self-inflicted type and the Government enforced lockdowns.
This is when I realised that I need human interaction, don’t we all? I realised that I needed to work on myself and my attitude. I worked really hard at becoming more accepting of my disability and in turn, more open and positive as a person. Now when people look at me, I just smile back or when they ask what’s wrong with me? I answer that I have MS instead of saying that it’s an ongoing health issue. It is what it is and it’s taken me a long time, five years in fact to gain this mindset.
I am very grateful for my supportive partner, friends and colleagues who have also supported me through this journey of realisation. Now everyday has its challenges don’t get me wrong and I still continue to work on the self-inflicted social isolation I can create for myself but the fact I am aware of it makes me work harder.
What I’d like others who have acquired a disability to realise is, yes, it really sucks, there are hard days, weeks and months but you need to work on your internal thought processes so you can remain socially active. Do not withdraw from life, we all need and deserve social interactions, you are still you and you deserve to be happy.
Greta Gurkltye is Project Coordinator with the ONSIDE project. Greta is an integral part of the ONSIDE Project and is a disability rights advocate.
Such an honest and encouraging blog post. Thank you for sharing your story Greta. I loved working with you on the ONSIDE Project. 😊
Hello Greta, I have just enjoyed reading your very interesting and enlightening post! Thank you for your help during my participation in the ONSiDE project and, in the DHF forum. I have always considered your help as being invaluable to me.☺️