In these crazy times, it’s too easy to just think about how our own lives are affected. This is one of the reasons I wanted to run my ‘open house,’ during this period. I spotted a very powerful video by Jurgen about being blind during this crisis. Something I just couldn’t contemplate! What follows is part of his incredible story and the wonderful video that caught my eye!
“In December 2004 I was diagnosed with a series of lymphatic tumours. The prognosis was not great, and my doctors were keen for me to start treatment as quickly as possible. By the 28th of December, I was in the Aberdeen Royal infirmary starting my first round of chemotherapy. I went from being an incredibly healthy young man, aged 20, to being weak, and unable to do much. I was lucky, and by the end, my tumours had shrunk, the cancer regressed, and I was able to move on from it
In August 2019, I noticed a white blurring starting to appear in my eyes. Within a few weeks, I had almost completely lost my vision. I was unable to leave my apartment without being guided. It was scary, as I didn’t know what was going on. After a visit to an incredible neuro-ophthalmologist, I was diagnosed as having a type one meningioma on the front of my brain. The tumour had grown in a pocket between my brain and the optic nerve. The pressure on the wiring of my brain had been damaged. On the 26th of September 2019, I had brain surgery to remove the mass.
The surgery lasted 9 1/2 hours, this must’ve been the longest 9 1/2 hours my mum and my friends had ever gone through. Unfortunately there was no improvement in my vision, There was a small chance that this could improve over the coming months, but realistically it was a long shot. In the subsequent months running up to Christmas, it took me a long time to get back on my feet and regain my strength. We often underestimate the toll that kind of operation takes on the body. I was exhausted, struggling to sleep at night, managing on a good night perhaps four hours sleep.
At the end of January this year, I made my way back from Scotland, to my apartment in SW London. Still off work, as I tried to figure out what my new normal was going to be. The most important thing for me was starting to regain my independence. To figure out how, without my eyesight I was going to complete every day tasks. Whether it be cooking, washing my clothes or getting to the pub. With help from social services, my friends, as well as my neighbours, I was getting there. Even making a return to my favourite spin studio and starting to put my life back together. Then lock down came.
The coronavirus crisis, has put many things into stark focus. Our reliance on certain key services and how much we need the people around us. Living alone in lock down, and being blind I lost all of my Social Services. This immediately created challenges. By the end of the first week, I was struggling to get food. I didn’t know any of my neighbours, and it was impossible to get delivery from the supermarket. So what do you do? Being blind, I couldn’t walk outside and go to the shops. With social distancing I couldn’t ask anybody to take me to the shops. When I heard the government were creating a list of vulnerable people, I thought great, I’m going to get help. Then I was told they had concluded that the blind, amongst many other groups of disabled people, were not on that list. As the Guardian put it in a recent article, vulnerable but not vulnerable enough!
Like many, maintaining my independence was one of the key things. I am not and was never looking for handouts, just the opportunity to be able to look after myself. I know it may seem trivial, but the simple act of getting onto the vulnerable list, gives you priority access to supermarket deliveries. It’s one example of many issues that we face. But imagine the anxiety, of not knowing whether you are going to be able to get food to feed yourself, or possibly your family. I hope that with a enough encouragement, Government will reconsider how they approach this. I do not need to shield, but I do need support. The vulnerable list has become one size fits all solution to a problem that is entirely more complex than that. Should I be shielding or on a shopping list? No. Should I be with vulnerable people who need additional support? I would say yes.
Since then, I have been fortunate. I am of an age where social media is second nature to me. Through this I have been able to find fantastic local businesses who have been able to deliver to me. What was clear to me, was that I was the lucky one. With over 200,000 visually impaired people just in London, there would be many unable to get the same support that I had been able to find. I was approached by the vision foundation to ask whether I would make a video about the challenges I was facing, you’ll be able to see that from this article. I wanted to make some noise, and let people know that I am struggling, and everything isn’t okay! And that we need support.
I want to say a massive thank you to Jurgen for sharing his incredible story. It is his birthday this week, and he has a JustGiving page to support Vision Foundation, who help people in a similar position! You can also connect with him on Twitter and Instagram. Please look around you, and understand the issues that other people may be encountering during these challenging times. For us to live well in our new life we will all have to look after each other much better than we did. All of us have our part to play, but some may need more help than others. Please embrace that!