Coping with COVID – A Brain Tumour Survivor’s Perspective
Have you heard the saying, “Go Grey in May”?
This May feels a little different for Brain Tumor Awareness Month. With COVID in effect, we won’t see people walking the town in their grey brain tumour awareness swag (like we have in previous years) but, I’m already seeing many social media frames helping raise awareness.
For many people, COVID has disrupted their lives; completely, turned their world upside-down! This sudden change made people feel the mental health side effects associated with not being able to socialize or go out in public.
Over the past year, were you not able to see family for the holidays? Or, maybe you weren’t able to go to work? Or, maybe you weren’t able to go to your favourite restaurant or store, or see your best friend?
This unexpected stop to daily life – not by choice – has caused unfathomable trauma to people’s minds. We are social beings meant to be around others, creating bonds, and having meaningful relationships. COVID has shown the world how horrifying a sudden disruption to the normal way of life can be on mental health.
Do you know how COVID affected my life? Well, not much. I’m a brain tumour survivor, a chronic pain sufferer (a ‘spoonie’ as some like to say), more than 50 percent of brain injury patients suffer from chronic pain.
That means every day, my existence is within the walls of my home and the grass on my property. I do not venture out and about without my caregiver and husband, Chris. And, like many other spoonies, I rely heavily on my caregiver!
The Impact of COVID Life
Even before the COVID pandemic, Chris would do the errands around town for us (groceries, shopping, laundry, etc.) because I cannot deal with the overstimulation and flooding of being out in public.
I have limited amounts of energy to expend per day without feeling the terrible repercussions of burnout and/or flare-up, which means COVID really didn’t change my life.
The impact COVID has made on my life:
I can’t go to my psychologist appointments (in person).
I can’t go to my float therapy; and,
My social skills have depleted.
But since COVID, I have noticed a HUGE switch on social media platforms. Now, more than ever, people on social media are talking about the importance of addressing mental health. The importance of staying connected and feel supported when alone – at home. This switch in people’s perspective has helped bring about awareness towards the struggles spoonies face daily.
When COVID comes to an end, spoonies’ lives will continue to stay the same. We will continue to remain within our walls, isolated from the rest of the world. See, we have already experienced tremendous traumas in our lives, something that has already stolen our freedom to go out when we want, whenever we want, and do what we want. And, like COVID, this was not by choice.
I keep reading this type of statement on social media: “I can’t wait for COVID to end so things can just get back to normal!”
The grim truth is COVID (like a chronic illness) has ever-lasting ripple effects. Life will never be back to normal. What the world was before COVID is no more. Even with vaccinations being handed out, relationships have broken down, finances have been burned through, and debt has accumulated. These are just a few of the major issues people are facing dealing with COVID.
We have had to face (even, early on in my diagnosis) all the above situations.
After my brain surgery two years ago, I thought I would be back to normal. But over time, I learned that back to normal will never come. It is something I have learned. And, I am still learning to grieve, let go, and move forward.
Moving Forward in an Uncertain Future
Let us share some things my husband Christopher and I have learned from grieving our pasts and what has helped us move forward in an uncertain future.
Dreams and Plans Change – I always thought I would go back to university and become a lawyer. After brain surgery, that was not possible, this came with a lot of grief, but it also came with a lot of new self-discovery. I had to take the time to find my passion again.
I never thought of being an artist. It was something that I picked up as therapy to help with my motor skills post-operatively. So, this is something to remember: Though COVID has taken something away, if you are open to it, you will see it is offering something for you to discover. Keep your mind open to the possibility of discoveries. I never thought of being an artist – it was something that I picked up as therapy to help with my motor skills post-operatively.
You Don’t Have to Change What You Do – Just Change the Way You Do It! – I cannot go into large crowds. Shopping is exceedingly difficult for me, but since COVID there have been many wonderful changes to the way I shop. Local stores offer curbside pickup, some even offer video chat (to walk around their store and see their merchandise), and many are offering delivery services. If you can’t leave your home or don’t want to, it can be brought to you.
This is one of the many wonderful things COVID has brought about. Everyone is stressed. Everyone is dealing with many issues. If you can limit your stress levels by not having to make that grocery shop trip (in a large, crowded area) and instead, you get to enjoy a few minutes (or hours) to yourself, I would encourage you to do so.
Show Random Acts of Love – Don’t be afraid to spontaneously go up to your partner or kids and hug and kiss them. Right now, the world is dealing with a lot of stress; you can feel it in the air when you walk out your front door. When I am stressed, a hug or kiss from my partner can make those feelings disappear. I suddenly remember the world isn’t as big and bad as it feels. Everything you need is in your arms – right now!
COVID has made it hard to go out for a date night or take the kids out to their favourite restaurants, but do not let that stop you from getting creative. Take turns planning an indoor date night or family night. Take that special bottle of wine on a hike with your partner and enjoy it in the outdoors. Rent or buy that new movie release and make sure you are well stocked with snacks for that movie marathon at home.
Also, remember some people are alone. Maybe, when you’re cooking dinner, make a little extra and drop it off at a neighbour or friend’s doorstep. Let them know they are loved and not alone.
GET DRESSED!!! Yes, we all need a pyjama day, but since COVID pyjama days have turned into pyjama weeks, months, going on years; this is all too true in the daily lives of chronic pain sufferers. As a spoonie, I spend my days inside, and I do not see anyone. There is no need to shower or get dressed.
But there are plenty of mental health benefits in getting ready and dressed for your day. The number one reason is it makes you feel good and releases endorphins. Yes, just having a shower and putting real clothes on makes you happy and happy people don’t shoot their husbands – they just don’t.
Anger is All Part of the Grieving Process – It’s okay to feel angry at the losses we have experienced, but don’t let it consume you. Being cooped up with your partner during COVID can be difficult. We experienced this reality after my brain surgery. Two different personalities are forced to spend copious amounts of time together as you have never spent before. This means tensions rise, and little things annoy you both faster.
The best way to deal with it is to talk. Don’t let little things fester and turn into something bigger than they are. We are all experiencing losses that our partners do not understand. When explaining yourself, or making a request, use a constructive tone – not a criticizing one. Remember, you are probably annoying them just as much as they are annoying you.
When I start to get infuriated, I go into my happy place to process. It’s important to make sure you take the time to find your happy place!
There is Nothing More Stressful than Finances! Make a budget and stick to it! We learned this quickly after I was diagnosed with a brain tumour. When I lost my job, it meant half our household income was gone, which also meant, we weren’t able to take those special trips to sunny locations (among other things).
Every month we were spending the same amount on our mortgage as we were on my medications; this became very daunting, and a budget became a necessity.
I know a lot of people are missing sunbathing on the beaches of Mexico. I encourage you to make a cup of coffee, sit, and reminisce over your previous years’ vacation photos. Remember all the good times, good people, fun adventures, and great feelings you experienced.
When you are looking at your photos, do not dwell on the fact that you can’t go there but focus on the memories you have made – these memories are your special treasures.
I have a photo on my fridge of my husband and I from our cruise ship vacation. I keep it up as a reminder of how I felt and all the memories I will forever hold close. Do not focus on the negatives – focus on the positives.
From a brain tumour survivor’s perspective, remember to celebrate the little victories in life, May – Brain Tumour Awareness Month – always reminds me of this.
The truth is, I will probably fail on what you can see, but I will be victorious on what you cannot see. And these are the kind of victories we need to learn to celebrate in our lives. The victories that resonate internally don’t have to be large victories for all to see; they just have to make your heart and soul sing.
Go Grey for May,
Lasha & Christopher Barbosa,
The PGCT & Mental Health Awareness Campaign
Not only am I a brain tumour survivor, but I am a local artist living in Fort McMurray, Alberta, who also runs The PGCT & Mental Health Awareness Campaign. The PGCT Campaign raises awareness and sends out post-operative care packages to warriors coming out of brain surgery. If you would like to help out or learn more about my story, please visit our website at www.pgctawareness.com.