As the world unravels around us and the need to be kind and helpful increases every day, the feeling you get of being a chronically ill, useless blob increases with it.
Some of the top things that upset me and make me feel most useless:
Not being able to go to protests
Not being able to go and help people out for fear that I would get in the way
Not being able to go help out because my body has no stamina and fainting after standing for 10 minutes in front of lots of people who have plenty to deal with already would probably not be very helpful to anyone
Not being able to invite people to stay with me when they need a place because staying in my home would make them feel in some way like they need to assume a caregiving role
The feeling that haunts you forever that you can not adequately take care of others because you are not able to take care of yourself
Maybe all these things are in my head, but aspects of all of them are definitely real. They may also seem like they’re coming from a selfish place or from a land of excuses because I am scared of getting out there or simply lazy. Lots of people may think that. And if you think that then so be it. All I can say is that neither of those is true. In fact, these things keep me awake at night. I try to brainstorm other ways in which I can be of help to all the people in our world who need it so badly. Of course there are ways. Via the wonderful internet and virtual fundraisers etc. And although these tools can be powerful in their own right, they never seem adequate enough when I’m judging myself.
I don’t have a solution to the Useless Blob problem yet. I have previously found out that denying that there is anything wrong with me in order to go out and push myself to do something useful always backfires and ends up in an either dangerous or embarrassing (or both) situation. The logical conclusion is then that I am being more helpful by hiding away and not getting in anyone’s way. This is also leads to intense internalised ableism…
Where is the balance? I don’t know. Am I thinking of people who suffer every day and night and try to figure out ways that my weak and useless body can help them? Yes. Everyone can do something, and I do what I can with what I’ve got. Even if what I’ve got is the body of a Useless Blob.
Spring is coming back. It used to be a time to be hopeful, a time where light returns and we get to breathe in fresh air and take in the sunshine. Two years ago this vision was spring was interrupted and replaced by a time that was characterized by fear and uncertainty.
This year it’s hard to know what to feel. The sun is out more and the sky is more blue. There are small flowers blooming and lots of birdsong. But if it wasn’t for those little glimpses of the season’s normality, it’s hard to tell that we’re going into a brighter and lighter season. The darkness of the past few years looms over us even when the sky is bright blue above us. The grief and memories haunt us and we are walking on eggshells even if those eggshells are dispersed among the blooming daffodils. While we look at those very flowers we think of the places in the world where these have no chance to grow or they will be quickly and violently trampled.
For me, this will be my first Easter without two important family members. Easter was a big holiday in my family. We all enjoyed it. Coloring eggs, eating lots, getting and giving chocolate eggs and little toy rabbits. I dread it now because I don’t want it to come without those people who I loved and who loved the holiday more than most.
Will we be able to embrace the warmth and hopefulness of spring despite our worries, fears and grief? We will have to wait and see. Enjoy the flowers in the meantime and be grateful for every time you get to look up at the open blue sky.
I did that climb once. The stairway 665 meters up a mountain in Northern Ireland. That was one of the last hikes I ever did. It was tiring, but I made it up and down again with my group. I was really proud. Almost exactly three years later, the change in my abilities and my health is stark. I struggle with pain and exhaustion from a simple walk around the block. That is a physical challenge for me today.
It’s difficult to accept that change. Because I don’t know what is causing it, I can’t say whether one day I will be able to get back to where I was. At the same time I can’t say that I won’t continue to get worse and eventually not even be able to make it around the block at all. I wanted to get into hiking. I moved to Scotland with the picture of breathtaking mountain climbs and hikes through the rugged landscapes in mind. Those never happened.
I try to accept that people change and that not being able to hike a mountain doesn’t make me bad or lazy or anything really. It just makes me what I am. I have tried to push myself physically with stubbornness and determination and that did not end well. It wasn’t worth the way it hurt my body. Walking around the block and doing a little yoga is much better than nothing at all. And I’m grateful every day that I am able to move my body even a little bit because now I know how quickly things can change.
I wanted to climb mountains. Maybe I will one day. Or maybe my mountains just look a little different.
For years I’ve been in a battle with myself. My mind fighting my body, my body fighting my mind and me as a person being attacked by them both. My goal has always been to “win”. Winning meant that I would go out and do what everyone else was doing no matter how bad it made me feel. Winning meant that neither my anxieties nor my physical pain would stop me from accomplishing what was expected of me that day.
In the last three years the battle between myself, my mind and my body has exhausted and frustrated me beyond words. It seems that I have fought hard and still lost many times. My body has stopped me from completing trips that I had dreamed of for months beforehand (pre-covid times). It made my college start almost unbearable and since led me to be trapped in remote learning even after my classmates returned to normal classes last school year. It has stopped me from getting a job to be able to save up like other young people to eventually be able to leave home and become independent. The jobs I have attempted –on the days where I tried to win– end in more upset just weeks or days later when I am forced to quit. Taking away the opportunity and at the same time making me look like a quitter. Something I strive so incredibly hard not to be.
Most recently it has taken away the perfect internship that I applied to and got accepted into a few months ago. Months that came before the most recent COVID surge, before my anxieties and my health concerns started mounting at a speed I could barely follow. During those months I held onto the possibility of starting this new journey with excitement but also growing sadness. As the weeks went on I began to see that my body was winning and that it was going to try to stop me.
This fight mentality is hard to live with. Fighting connotes anger and aggression, neither of which I have. So being angry at myself day after day became exhausting quickly. As I write this it is just a couple of days before I am due to start at the new workplace. I have still not given up enough to write to tell them that I am unable to come. Somewhere in me I always think maybe I can keep fighting just a little longer and then everything will turn around and I will win this one. The thought of writing out that email pulling out of yet another commitment makes me want to throw up. It fills me with guilt and shame and frustration all directed towards my body and my mind. When I inevitably send that email I will cry thinking of how I allowed my weak mind and body defeat me again. To take away another thing that I had wholeheartedly planned and wanted to do.
I may have had all the world’s best intentions, but the people on the other side of that email don’t know me. They have never met me. This may seem like a good thing- the email of the quitter will essentially be anonymous. But they will also think badly of me for being that person who pulls out of something at the very last minute. They will never know the battle that raged between every part of me for weeks leading up to the defeat in the form of that email.
No matter how hard I try to take advice like “be kind to yourself” and “you’re doing your best, that’s all you can do” to heart, I still feel ashamed. Ashamed of every time I have had to disappoint someone who was relying on me. Ashamed that other people my age are living and working, creating a life that I don’t even dare think about because it seems so far out of my reach.
I’m not at the point yet where I can be at peace with letting my illness win. But I know I need to get there. When you fight yourself you will always lose.
To be totally fair, I’m not sure if this is something I came up with or someone has said it long before me, but it’s a phrase I have been using for years. One of my personal favorites.
I love laughing. I love being silly and making jokes. I would love to spend all my time with people who make me laugh until my stomach hurts (very few people actually have this skill but I’m lucky to know a few). But life is sometimes really really unfunny. Like full of situations where you are crying or screaming or shouting, and any one of these usually involves lots of tears from me regardless. I am fully aware that not everything can be turned into a joke and that humor is not always the most appropriate way to go. But it actually is more often than you may think.
After you’ve felt the feelings and felt the pain, or comforted your friend or cried with your family, there should always be space for laughter. If you didn’t start to laugh at some point you would just cry forever. I cried about my mother’s cancer, lots and lots and lots. But I also made dark jokes about it and when at some point early on was able to share this humor with her and she joined right in. Plenty of stuff about hospital appointments and strange drug side effects can be funny. If you were sitting in the waiting room and couldn’t laugh about how ugly the plant looked or how ridiculous the painting they had chosen was, you might just sit in there and cry because it’s a hard place to be. But laughter makes it easier.
Humor as a coping mechanism. Yes, that’s what it is. Why is “blank… as a coping mechanism” seen as something negative? What’s negative about coping? If laughter and jokes help you through the darkest times, then go for it. I couldn’t just cry and cry. I couldn’t do it. It’s also quite tiring. But if I didn’t laugh, that’s what I would be doing instead. Trying to make the best out of the worst. Make it funny. Allow yourself to laugh at the ridiculousness of the darkness that we find ourselves in.
Christmas is almost here. But this year it’s impossible not to be touched by the suffering the world has gone through and our own individual pain. I think it’s fair to say every human being is struggling with something this year. Accumulated grief from (more than) 12 months of unfortunate events seems to want to spill out all over the pretty decorations and fairy lights. Yet, for the most part we keep it in. We don’t want to ruin all those sparkly decorations or admit that we don’t actually have the appetite for a traditional Christmas dinner. It’s in a strange way both sickening and comforting to watch the Christmas advertisements playing as they always have, and shops still reminding us to buy gifts and indulgent foods, when these are the last things on our mind. These holiday traditions act as a kind of barrier for a couple of weeks as we use them to shield ourselves from all the hurt.
It’s not really the best way to end the year. Instead of letting all our pain out, we are forced to keep it in, even more so than during the rest of the year. What I want to do is sob loudly and bang my fists on the floor like a toddler, but instead I sit quietly and smile and bake cookies and listen to Christmas songs. As if everything is as it should be. Sometimes I’m grateful for the distraction of the busyness of the season, where some days those tasks take up so much time that the sadness recedes a little. But most of the time I find it tedious. I want to acknowledge all we have been through this year, instead of burying it all under a pile of tinsel. If we’re ever going to get the Christmas spirit out from under the grief, that grief has to be exposed and picked through in order to move it and make room for all that the season demands.
I have to give credit where credit is due. I first came across this concept from the amazing Stacey Heale. I read it on one of her Instagram posts months ago and have not been able to let it go. In the last two years especially life has been governed by fear for many of us. There was a period where every morning I woke up with fear deep in my stomach before even starting the day. However, it has also made me realize that the fears I once had are not worthy of my time and energy anymore. These fears include things like
What will people think if I wear that?
What if someone doesn’t like that?
What if I look stupid or make a mistake?
I think you get the pattern. We have been facing a type of fear that I had hoped never to face in my lifetime. The only positive thing to come out of this fear is that it eclipses my small fears. Now I’m no longer afraid to wear what I want. Or tell people what I think.
The biggest thing I had been saving for when I wasn’t afraid anymore was writing. More specifically, sharing my writing. Here. I have to say despite my own little pep talk (which I have repeated to myself for months) I am still a little scared to click the launch button. I worry that I’m oversharing or that someone will find this and think I’m silly or overdramatic. Or just hate my style. But if I don’t do it now, I never will. If you’re reading this I did it. I did something I would only do if I wasn’t afraid anymore.
One of the hardest things about feeling ill all the time is that I often feel useless. Useless is not a nice word, but there isn’t really another way to say it. I feel guilty for “sitting around” and being in a position that from the outside looks like I’m choosing to not get on with things. By “things” I mean basically anything from helping out around the house to doing my college work or getting a job. All the things that a lot of people my age are doing without problems. I can even understand why someone may look at me and think I’m lazy. I understand how it looks. However, I’m not sitting on the couch or lying in bed all day for the fun of it. In fact, there is really no fun part to it whatsoever. I’m sitting there because I’m unable to get up.
I already feel a lot of guilt about my inability to do lots of things every day. Guilt that I say no to a lot of things because I just can’t. But all this gets worse when other people point it out.
“You have two functioning legs, so of course you can get up!” or
“Have you been sitting there all day??” or
“What have you contributed to this??” or
“I think you’ve rested enough now!”
Those are the kind of comments that hurt the most. Trying to respond and explain to the other person what you’re feeling is almost always impossible. They don’t understand that yes, you can still be in pain after a week of “resting.” That yes, you have a headache “again.”
I find this to be a type of compassion fatigue. For people with long-lasting or chronic illnesses, the compassion from the outside world, including those closest to them, often wanes after a certain period of time. When you’ve reached your limit of being sick; when they feel like they’ve given enough. That’s difficult. Not so much because they stop understanding but because you know that you can’t get up just because they stop understanding. That no matter how much they urge you to get over it after so long, it’s not actually possible. So you will end up disappointing them. Feeling still more useless.
I want to go out and work. I want to not be exhausted or in pain. Nothing would bring me more joy than being independent and not relying on others. I don’t want to put extra work on anybody, I hate feeling like a burden. But that’s the reality some days. I wish people on the outside could understand this, not just for me but for everyone out there trying so hard to get up.
It’s a very strange feeling to be somewhere so frightening, but feel lucky to be there. That was the first thought I had when I stepped in the door: so many others had not had the chance to see their family members there. I was so lucky that this was a time where the virus was under control, and visiting was allowed. The ICU has never had publicity like it has during the pandemic. It was a place that to me had become a sort of terrifying mystical land– the place you under no circumstances would want to end up. It became intwined with COVID, in such a way that I forgot there were other people there.
I had not imagined in any worst case scenario that I would ever visit this ward. Especially during the pandemic. I had been to many many other wards, but that was different. The ICU was darker, the shades in the room were drawn. It was simultaneously quieter and louder. Quieter because there was no human chatter but louder because there were many more machines in the small space. I hadn’t realized that if you’re not covid-positive, you’re not isolated in there. I was very surprised to see a room with four bed spaces. Privacy only provided by a cloth separator between them. It all didn’t look as scary as I had thought it would. The ventilator that I had heard discussed so many times in the news was there but it was a lot smaller than I had imagined. The most surreal part was watching someone breathe and at the same time being told they are no longer alive.
The other thing that struck me was the staff. My mind and body were overwhelmed just standing there for less than 10 minutes. I could not fathom how someone’s work day played out in there. That you could spend 12 hours among the sickest people, hovering between life and death and then drive home and cook dinner or pick up your children or watch TV. I thank God that there are people who are able to do that. I just have yet to understand how.
There was a small room for visitors. It had a coffee maker and a sink and a TV playing local news obnoxiously loudly. It’s strange to sit in there and wait. For what? As if the person in the coma knows you are sitting in the world’s most uncomfortable chair drinking cold coffee. Of course they don’t know that. But something in you makes you unable to leave. In a situation where you are hurting so much and in need of so much comfort, the discomfort of the hospital always shocks me. Why not play low soothing music instead of the news? Or provide a slightly comfier chair, knowing that these grieving families will often spend days at a time not moving from their seat.
There isn’t anything that can prepare you for seeing a loved one in a coma in the ICU. Now that I have seen it, it’s less of a mystery land. It’s a real place with real people. Some of them doing their best to save lives and the rest doing their best to survive.
As a child I thought that adults were invincible. I thought that they didn’t get scared, that they didn’t feel pain. I guess that’s because I was so protected. I was lucky to be in a family where whatever pain my parents felt they hid pretty well for many years.
As I got older I understood that of course that wasn’t the case, but I still looked at my parents as a stable foundation. As cliché as it sounds, I thought bad things don’t happen to my parents because they’re my parents. They’ll live long happy lives and be with my through my own. The realization that that is not the case is a difficult one to have. Mostly because it usually comes as a direct result of tragedy.
While my mother was in cancer treatment I realized that she was going to die. Maybe not today or tomorrow but some day. As I watched her get weaker and weaker, I realized that adults can’t do everything. They most definitely feel pain. The first time you see that, it’s very disconcerting. That’s when you know that you’re not a child anymore. When you are the one that your parents see as invincible and not the other way around. When you are the one hiding your pain from them so as not to scare them.
This year I lost two people who I truly had believed were invincible. They were so strong and so happy all the time, I had never seen either of them shed a tear, scream or shout. They were healthy all their lives, and never let anything get them down. You may think I’m exaggerating, but I’m not. They were incredible people. People like that can’t die. And yet they do. The Invincible Adult is a myth. I see that now. Because I’ve watched all the strongest adults around me crumple and now I’m an adult and I’m most certainly not invincible.