Disabled and Living Through a Pandemic

Greetings readers,

Welcome back to the blog!

Needless to say, the Covid-19 pandemic changed all of our lives. None of us saw 2020 coming, at least not in this way, and yet, here we are. Believe it or not, it’s been 6 months plus one day since the World Health Organization officially declared Covid-19 a global pandemic.

In the past 6 months, it’s definitely not been easy. Even though I can’t and I won’t speak for everyone, but I think, this is true for a lot of people, and myself included. However, I’ll also just add that, the challenges and struggles this pandemic caused us, is amplified even greater for those living with disabilities and have chronic illnesses, with new sets of barriers. And today, for this blog, I wanted to share just that with you, on some of my personal experiences, as a disabled and chronically ill person, living through this pandemic. And not to mention, doing it all (physically) alone. But, I’ll put this thought out here first, and that is, not everything is bad or hard. But without a doubt, there were some very hard moments for sure.

But before that, I just wanted to quickly mention, when this pandemic first struck back in March, I wrote a blog on thoughts on covid-19, with some backgrounds and my thoughts on the situation at that time, of course, so many things have changed, and we’re all learning as we go, and even though the road ahead of us may still be long, but I’ll say that, we as a society and as individuals, all know a lot more now than we did months ago, so that alone is a positive note.

As I said earlier, many things happened during these past 6 months, so here I am, very openly and honestly, sharing with you, how me, as a disabled person, have been living through this pandemic. Let’s talk about the good, the bad, the things I’m grateful for, and the things that have been really really hard.

The Good and the Things I’m Grateful for (*not in chronological order):

– Even though I’ve been physically apart from both my family and my friends (and my decision to do this wasn’t taken lightly) for months, I still connected with them virtually, through text messages, phone calls or video chats. And of course, I know that connecting with your loved ones virtually is different from physically seeing and being with them in person, but I’m just grateful to have the technology that keeps me and my loved ones connected. I’m also lucky that in the summer, when the virus numbers have been relatively low locally, I’ve had some opportunities to safely meet my family and a very few of my friends during that time, with carefully following safety measures of course. This helped me a great deal mentally. Even though meeting with my friends and loved ones while keeping a distance, was definitely a weird experience, and unable to hug them at the end was also very hard, but I still believe it was a good idea to meet.

– I’m grateful for having a roof over my head, and especially, for having a safe and comfortable living environment, because not everyone has that. Even though I don’t live in a luxurious home, but my tiny apartment is considered my safe haven. In addition, I’m also very grateful for the location of where I live. Because, I live so close to both a grocery store and a pharmacy, so I never needed to travel too far to get my essentials, especially during the initial months of lockdown. And of course, I’m grateful to have the ability to put food on the table. And needless to say, I’ve been cooking quite a lot at home, and I may even have improved my cooking skills because of it!

– One of the things I was and am still concerned about is keeping up with my regular health checks with my medical team. Yes, as a disabled and chronically ill person, this is important, pandemic or without a pandemic. And also yes, the pandemic has disrupted this at times and to a degree, with some cancelled and rescheduled appointments and, most doctor visits moved virtually, just like a lot of other things. I’m still grateful that I’m able to receive the medical care I need. Also, overwhelming the healthcare was and continues to be my biggest fear in this pandemic, because that could meant people like me, that need routine care, unable to receive it, and that wouldn’t be good news. It is safe to say that we’ve passed a difficult phase (and perhaps the first wave) in our fight against Covid-19 but, we are still not out of the woods yet! Further on the note about receiving medical care, I’m extremely thankful for my current medical team, for always keeping on top of things, and for recognizing my needs for on going care and surveillance for my health. I definitely wouldn’t be as confident as I’m now, without their help and support.

– Because of the pandemic, and because I had a lot of time during this time to just stay at home, I’ve found myself having a lot more rest and nap time than I ever did beforep. And, because I’m not out running around doing things as I used to, which would often left me exhausted, since late spring and especially leading up to the summer, my health status was relatively good and stable, and it’s not just I said so myself, but my healthcare team said the same. Of course, this in part was also to be expected, because the summer months have always been the most kind and in my favour in terms of my health. But, as the weather is now moving into fall and winter, I’m more and more aware of the changes and its tolls presented on my body. But, I’m hopeful that again, because of the pandemic, and because I won’t be out as much than the previous fall and winter seasons, I’d really like my health to stay at a relatively manageable status. And of course, I at least have a peace of mind, because I now have a health team working to help me, if and when I need that help.

The not-so-good and Hard Moments (* also not in chronological order):

– The isolation is real, especially during the initial months of lockdown. As citizens were being told to stay home by public health officials and to only go out for essentials like groceries and medications, which I did exactly I was told. I only went out probably once every 10 to 14 days at a time. Sometimes, I ordered groceries online so I didn’t have to go out as much. Isolation is hard, and it’s harder if you live completely on your own, and adding that if you’re disabled. Even though I had a lot of time at home, during that time, I found myself to be very unproductive and unmotivated. And not to mention, it’s even harder at night, when everything’s quiet, and when lights are out for bedtime. And instead of going to bed, I often found myself crying, without any reason. I don’t believe I was depressed, I guess I was just lonely, and maybe also sad, and scared, of the unknown.

– I know I just said I’m grateful to have a grocery store near where I live, it didn’t take me long enough to learn that getting nearly 2 weeks of groceries is different from getting 3 days of groceries, like I often did normally prior to the pandemic. And that 2 weeks of grocery is HEAVY! I struggled a lot during the period of lockdown, when I had to get more groceries than usual to avoid going out more often than necessary. And during the initial month or two, getting grocery deliveries was harder than you could ever imagine, because of the high demand and the long wait time. But after that, it got easier. I especially struggled the time when I had to go out and get a bag of 15 pounds of rice, I had a great deal of difficulty getting that bag of rice home. When I finally got home, I was very exhausted and very breathless. And, I felt all the emotions. I felt the hardships of being alone, and having to take care of my disabled and chronically ill body, and just having to do every little thing on my own, without a partner, a friend, or a family. And those emotions eventually led to tears. Then, I later told several of my friends and family about this story, and I cried more as I told them the story. Some of my friends said, I should’ve reached out and ask for help, and others praised me and said “But you did it!” The truth is, everyone’s stressed during that time, so it’s harder to ask for help; and yes, I did it, because I simply had to do it. There were also times when grocery clerks looked very concerned seeing me with 6 bags of groceries, I thanked them for their concerns, and again, I just had to do it.

– If there’s one term that we’ve all being hearing again and again throughout this pandemic and that is, physical/ social distancing. Because it’s through keeping us apart, that keeps us from spreading and/ or catching the virus and pass it on to others. Thus, this became the new normal for us. But, this new normal isn’t all that accessible, for a disabled person, and especially for a visually impaired person like me. Because, physical distancing is visual, it requires us to see (the distance) and the marking labels on the ground in a store for instance, to know where to stand, which direction to walk, and to keep ourselves apart from those around us. For me, as a visually impaired person, I consider myself a fairly confident and independent traveller pre-pandemic, I can get to most places on my own, and if and when I can’t, I’m not shy to ask for help. But, Covid-19 not only made asking for help a challenge, because sighted guides often require close contact (holding onto someone’s arm for example) , but also, with physical distancing, well, it’s just not all that accessible and sometimes doable, especially when you don’t really see as well. And all that markings on the ground cause confusion sometimes. But I think so far, I’ve done a fairly good job, I always try to stay as further away and apart from others as possible. Undoubtedly, there were times when I was way TOO FAR APART. I remembered this one time at the grocery store checking out, I stood 4 meters apart from the person ahead of me! I guess, you could say that, physical distancing and blindness, don’t mix well!

– Aside from missing my family and friends, I also deeply miss my community involvements. I’ve been an active and engaged volunteer in my community for a few years now. It’s been an important part of what I do, and my identity. But, Covid-19 changed this (and I know I’m not alone!). Although some activities have moved online, just like everything else, and I’ve attended several virtual meetings and activities, but again, that’s just not the same as in person. And, what I’m missing a lot on is speaking in public, with a live audience, stead of speaking to a laptop and seeing people only from my laptop screen. The experience is just really incomparable. But I know, it’s just not possible for the foreseeable future (and at least for me for a while ) to be ready to speak to a live audience. But I will always be ready, when it’s the right time, whenever that will be.

So overall, this is my story, my journey of living through a global pandemic as a disabled person for the past 6 months. How was your past 6 months? I hope that no matter how it went, you will continue to stay safe, stay healthy (or as healthy as you can be), and stay connected with the people around you. Even though we may not be able to see a lot of people in our lives right now, I believe that we are resilient, and strong, and we can get through this!

By: The Invisible Vision Project

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