Posted in Blog

The Lockdown from an Isolated Perspective

The coronavirus pandemic currently has the UK (and most of the world) in lockdown, social isolation and for some, quarantine. 

It seems that everybody is struggling. For those of us with disabilities and chronic health conditions however, it feels like the last straw after a lifetime of setbacks and intermittent isolation when health takes a turn for the worse. 

I have focal onset temporal lobe epilepsy. My seizures deeply impair my awareness and can last from a few seconds to 30 minutes.

I was eventually diagnosed in 2014 after suffering from undiagnosed focal and secondary generalised seizures for a number of years. A diagnosis meant medical treatment, however, unfortunately, medication has not been able to control my seizures. I was able to work up until three years ago when I lost my job. My physical and mental health subsequently spiralled and simultaneously became intertwined where stress, anxiety and depression triggered seizures, leaving me bed bound for days on end and feeling even more depressed and overwhelmed by loneliness. 

Post-seizure, my body goes into a metaphorical state of lockdown – restricted movement and crippling migraines preventing me from leaving the house. Frequent seizures leave me in a constant state of fragmented awareness, which also makes me pretty difficult to communicate with. I’ve also lost many friends and family over the years because of my epilepsy and affected states of mood, leaving me extremely isolated at times. Nonetheless, the friends who have stuck by me, I’ve been able to stay connected with on social media. But the downside to that is being stuck at home watching the rest of the world on social media living their best lives. 

So I know what it’s like to want to go outside and not be able to. 

Over the past year, although medication has not been able to stop the seizures completely, it has been able to reduce them, which meant that my quality of life was beginning to improve and I was finally able to start living a life outside of my house. It was liberating. 

Until the pandemic forced me into lockdown. 

Imagine my despair after finally making it outside my house to being told that unfortunately, I would be moving back inside until further notice. Having asthma as well as a neurological condition meant that once again, I am being imprisoned against my will, leaving my new life behind. 

And having a disability that is triggered by stress and anxiety is extremely distressing in ‘normal’ times. We are now living in very unsettling times where nobody knows how long we’ll be socially distancing for; nobody can tell us how much longer we’ll be at risk for; in fact, nobody can tell us how long we have been at risk for. 

Most people who are social distancing are still able to go out for daily exercise and go to the shops, but I’m currently having at least one seizure a week which leaves me out of action for days, only for the next week to begin the cycle all over again. Which means that I’m back to living a life I’d hoped I’d left behind. 

Once again social media has become my lifeline to the outside world, but a very destructive one. I’ve seen many able-bodied people outraged at the perceived “injustice” of social distancing and the lockdown. 

I’ve seen able-bodied friends continuing to meet up with groups of people so that they don’t have to miss out on their Saturday night drinks and just earlier this month, a friend posted a picture of themselves on social media at a local swimming pond that had been closed following the lockdown, having climbed the gates to continue their routine morning swim. While protesting the lockdown, they were also refusing to recognise that doing so was endangering the lives of loved ones as well as strangers. As I tried to appeal to them with reasoning, they accused me of attacking them for living their life the way they chose to and were not going to be told what to do by me. 

I felt betrayed. 

If you can’t rely on your friends for support during a lockdown, then by golly! Who can you rely on?

To me, it feels like disabled people have been forgotten. The guidelines from the Government are very ableist: the only time vulnerable people are mentioned is when we are reminded how at risk we are. And as people continued to stockpile essential goods, leaving pleas from the government and retailers falling on death ears, I felt even more forgotten as well as frightened. 

This entire situation is unfair and is a situation that affects us all, but does anybody care how it is affecting those of us who are disabled with physical and mental health conditions?

Be aware that in no way am I saying that the majority of people in the UK haven’t been forced to make sacrifices. Because they have: people have lost loved ones, jobs, homes, because of the pandemic. 

However, there are a minority who choose to ignore the sacrifices that have been made and refuse to acknowledge the consequences of their selfish behaviour. 

I wonder every minute of every day how long we will be stuck indoors for and I also wonder for those of us whose existing health conditions and disabilities have been negatively impacted by the pandemic, how long will we be indoors for once this is over whilst we recover?  How long will it take my body to recover from these recurrent seizures once the lockdown has lifted and life returns to ‘normal’? 

And seeing able-bodied people moaning about the lockdown with no regard to how it’s affecting everybody else only aggravates my condition the more. 

The longer our able-bodied neighbours continue to disregard the lockdown to protect society as a whole, the longer those of us who are disabled will be stuck at home with just our conditions and frustrations to keep us company. 

Perhaps I’m missing something? Maybe if I was able-bodied I would join them? But then I’m not, so how would I know?

Posted in Blog

Sisters

When things began to fall apart in my career and my personal relationships, I decided that I wanted to seek out new friendships but I was mindful about what type of person I was looking for.

As a disabled person of colour, I’m a double negative minority and the people I was surrounding myself with were not getting that, which was why we were falling out.


I needed sisters of colour around me.


There were actually some sisters that I already knew and I just drew closer to them. They saw me hurting and didn’t even wait for me to come, they just reached out and rang; For example one of them, I hadn’t even seen or spoken to in seven years, reached out on social media after seeing everything I’d been through. When we finally spoke on the phone the other day it was like we’d been talking every day! We’re making plans to meet up soon and we’ve been keeping in touch on WhatsApp.

One sister, I call my little sister. She has been with me through thick and thin. We’ve known each other for years; she was there through the heartache with my family. We started Teacher Training together and we were supposed to make it to the finish line together. She stood by me while my childhood best friend disappeared and I continued to cheer her on regardless of my own situation. Now she’s an NQT (Newly Qualified Teacher) and we talk on the phone for hours about my woke-ness (she prayed for it!) most weekends and I listen to her tales of teaching teenagers (which I surprisingly don’t miss! LOL). She bought her first car this weekend and I am SO PROUD of her. I can’t drive, you’d think I’d be jel right? Heck no! She saved up for the car, bought it herself ❤️


And then there’s my Bumble Bestie; I just cannot believe I met a sister through a frickin’ app! And one I have so much in common with! Music, art, film, fashion, politics. We’re both in interracial relationships, therefore we both understand the struggles of becoming woke after falling in love and therefore the emotional battle of being constant educators; We both also had very similar traumatic childhoods, almost parallel. I do not think I could longer go a day without talking to her.


I’ve realised that in life, you really do need friends that you can connect with and relate to. It means so much for your self-concept. Before, I was so lonely that I would surround myself with anybody and I would call these people my best friends but they didn’t know me. They didn’t know when I was really happy, sad or really suffering.


Now I have friends I can go to when I’m feeling suicidal because I’ve had multiple focal onset seizures all afternoon and can’t get out of bed.

Or when my partner has accidentally said dumb shit about structural racism and thinks I’m overreacting to his comments.

Or when I’ve been able to go for a jog for the first time in a year.

All of my sisters are with me for all of my seasons. 


Posted in Blog

Social Media: Let’s Get Personal

This is going to be a VERY angry post. After my last post on mental health, I had some negative feedback on my personal Facebook page from somebody I know. We came to blows and after her comments, I had to block her.

 

People were comfortable when I was only sharing posts of me smiling, because that’s what social media’s about right?

 

Putting on a show for one another’s amusement.

 

We tell each other what we had for breakfast; we post pictures of our cute little dogs; we check in on our trips to Ikea (I actually did that yesterday haha), and the sad posts are okay as long as they’re temporary. People don’t care about our pain if it doesn’t have a sell-by-date, and I’m sorry but that’s the truth.

 

Since I’ve become sick, lost my job and become more outspoken about race, more and more people on my personal Facebook page have criticised me for “moaning” on their newsfeeds. This is regardless of balance too – I’ve shared the positive and the negative. 

 

How dare you tell me what to share about my life?

How dare you tell me what to post on my own Facebook page?

I have to scroll past your trash whenever I log onto Facebook, while I’m lying in bed crippled after a seizure or depression. Or both.

And by the way, thanks for fucking asking if I’m okay.

If you don’t like what I’m saying, scroll the fuck on bitch.

Eye Roll

Talking to a close friend about this, and taking her advice, I had to come to the decision that I’ll no longer to posting my blog to my personal Facebook page. And that’s tragic, because it appears that I’m now writing to the world and not my home. However, it protects my mental health, and it reduces stress, which will hopefully reduce seizures (by the way, my Zonisamide has been increased, I’m not fucking happy. 500mg, on top of the Keppra, AND anti-depressants???? For fuck’s sake. But of course, people on Facebook are sooooooooooooooooooooooo tired of hearing me moan about my fucking epilepsy because it hasn’t gone away yet).

Every day shows me who my enemies are; I already know who cares, I need to focus on that.

Furthermore, haters is a sure sign of success – I’m pretty sure that somebody somewhere successful said that.

You Got It Dude

Thanks for reading guys, and I also want to take this time to thank you for your support.

XOXO

Posted in Blog

Dark Shadows: New Horizons

During my suspension, I’ve been spending a lot of time on the couch re-watching Mad Men.  My least favourite character has always been Betty Draper/ Francis:

Betty Draper

(Jeff York (C) 2015)

She reminds me too much of my own mother. During this season, Betty’s also gotten fat… I’m not going to lie… the bitch in me delights in this after watching her put her skinny little arse before her children for four seasons…

Betty Draper Thanksgiving Dinner

(This Thanksgiving dinner! Hahahahahaha)

… You would think that I could at least sympathise with Betty, she clearly has mental health issues, but….. *thinks*….  nah.

However, I saw her in a new light today when she said this to her second husband Henry Francis in Episode 9 “Dark Shadows” of Season 5:

You’re always thinking about other people, and then you’re angry because no one’s thinking about you.

Leo Double Take.gif

(Hold up… that was Betty Draper??!!!?!?!?!?!??!?!)

I admire Henry Francis: he took on A LOT of shit when he took on Betty. I’m not defending Don Draper as a husband. Furthermore women as a collective, during the 1960s, faced a huge amount of torture. However, despite the masculine cacophony the majority at least attempted to make life better for themselves and their children, while Betty as a mother is just a monster who very evidently takes her own unresolved childhood issues out on her children and while Don manipulated this, Henry took this on, faced it head on and helped her. Unfortunately, he probably won’t ever alter my perceptions of Betty – as I said, she reminds me too much of my own mother, however for her to finally recognise enough how much Henry does for other people, and how little he gets in return for it and also recognise his anger for that, is pretty awesome.

 

This is something that I have been dealing with, because I’m constantly thinking of others. It’s something it seems that I was born to do. From a young age I was doing it for my family and now I do it instinctively, so much so that I forget that not everybody else does it too, and if they don’t that doesn’t necessarily mean that they don’t care. However, that doesn’t invalidate my anger.

 

Betty then went on to say:

It’s so easy to blame our problems on others but really we’re in charge of ourselves.  

 

I’ve come to a massive crossroads in my life. I’ve now become too sick to work – that is very much clear, therefore I cannot look for another job. Therefore I’m going to have to claim benefits.

I’ve also decided that it’s time to find my own place. As much as I love my partner, I can’t live with him anymore because I need my own space and my independence, and the stress of living with somebody else while so ill is actually more detrimental to my health than its worth.

This doesn’t mean however, that we’re breaking up.

 

It’s incredibly scary because I’m not going to have a job, yet I’m looking for somewhere to live on my own?

Am I crazy?

Yes. Yes I am!

But it’s also the first decision I’ve been able to make in the last few months that makes me feel pretty damn good.

 

It feels bloody good to be taking charge and soon also take charge of my own happiness.

Posted in Blog

Mean

This week has been one of highs and lows.

 

Today I write to you from the bathroom at work, as I cry, wondering how the people here can be so mean.

And yes I am aware that calling people “mean” makes me sound like a five-year-old however this is the only suitable adjective to describe people who can make you feel so low about yourself, that you feel sick.

Having a weakness makes you weak and people will treat you however they want to.

If you let them.

Lately I’ve been wanting to quit my job because I was tired of being the renegade and the voice of the minority. But I always forget myself in this.

What about me?

Shouldn’t I stand up for myself?

Don’t I deserve a hero?

Don’t I deserve to finally have somebody speak up for me?

Aren’t I tired of waiting around for people to do it for me? Of course I am.

Unfortunately as an invisible disability, it is extremely difficult to prove discrimination against a person like me.