I’ve been a bit quiet with my blogging, and it’s not because I don’t have a lot to say, in fact it is the complete opposite. I feel completely overwhelmed with the situation, at a loss of where to start and what to say first.
The situation of this pandemic has hit us all hard. The lockdown has caused an immeasurable change in society, and it is honestly hard for me to put words to how this makes me feel. I have fought for what little freedom I have for over a decade, and the battle has been hard. Not only have I had to fight my chronic health conditions, but I have also fought the stigma that comes with invisible illnesses. How is it possible that the accessibility that every disabled person has fought for has suddenly become available overnight? We have yearned for equal opportunities, flexible working hours, working from home and accessible experiences, but for so long it hasn’t been a possibility. Even though it is truly amazing to see the world change so dramatically, I wonder why it took a pandemic to make this happen, and why we had to wait for ‘normal able bodied’ people to be affected before change was made.
Parts of me feel depleted at how the world could change in a click of a finger, when I alongside many others, have been campaigning for this change for half my life. It is bittersweet. I know it is an important change and it needed to happen, but it has made me feel like my life is not worth as much as an able bodied person.
I also find it challenging to hear how much people are struggling with the lockdown, when this has been mine and so many other’s realities for so long. In fact, the rules of self isolation at the moment, are a luxury in comparison to my life. The even harder fact for people to contemplate, is my life is considerably more freeing than it has been for fourteen years, but it would STILL be considered imprisoning for the public.
Not that long ago, I could not leave my room. I was trapped inside the four walls of my bedroom, which I made into a world. I could only leave my room once a month, maybe twice if I was lucky. If I went outside in my wheelchair for five minutes, my body would come out in a rash because it had been so long since it had felt sunlight and fresh air. I couldn’t concentrate on the television, without being thrown into a debilitating exhaustion that crippled me for weeks at a time, sometimes longer.
As the reality of this virus has taken hold, I have been hit with a mixture of emotions. I think before I always coped very well with my life because I knew no different. I couldn’t remember what it was like to not live in agony, or to be able to walk around freely. Now, I am scared. I have had to stop watching the news, stop scrolling through Twitter and distance myself from the outside world.
All I have heard and seen is this virus ‘only’ affects the vulnerable. What happens if the vulnerable is you? The constant reports on every channel on the television is causing me to live with an anxiety. What would happen if I came down with it? Or even more so, what happens if Samuel goes down with it? These are all the difficult questions that we are having to contemplate and talk through with our social worker.
I look outside my window everyday, and I know how lucky I am to just to be able to do this. I can move with help to the living room and I know this is a freedom in itself. It is difficult to see that others aren’t taking this seriously. My neighbours go out multiple times a day, with multiple different people and I can’t help but feel angry that they are doing this. To be able to go outside once a day for exercise is a luxury that so many do not have.
I have felt numb with so many conflicting emotions. I feel lucky to be at home with my daughter, but I have had moments where I feel I’m not doing enough. I have moments where I feel guilty for the fact that I can move into another room, but I still dare to feel like this is a huge injustice. Lockdown is not ideal for anyone, but I feel a pressure from society and myself, to do something deemed worthwhile in this time. For some people, it will be taking up a new hobby and for others it will be organising the whole house. It is luxury to be able to do this. Being bored is also a privilege. The constant adrenaline that at the moment is causing me to feel restless, despite how exhausted I am, means I am just trying to survive each day.
Before this lockdown, I had been able to go out more often, which has now given me an understanding of what it must feel like to have been living with freedom, only for it to be taken away. I know it is hard, and I know it is terrifying. The dip into the ocean into the reality of chronic illnesses that everyone is feeling at the moment, must be scary. To feel the loss of control in everything you do is horrifying.
Please remember, this is our constant reality. When the world comes through this pandemic, we can’t go back. We can’t go back to an inaccessible world where there are constant inequalities. We have to move on with kindness and take the positives out of this horrendous ordeal. If you are able bodied, please remember us when this is over.