Dear Emergency Room,

Another trip to a hospital. This time the Emergency Room. It’s fair to say that when you are in an ER at 2 am, you are not feeling, looking or acting your best. You might even be terrified out of your mind thinking that this is finally going to be something really really bad.

That was me the other day. I was in so much pain. I was crying and upset and scared and tired. I was in a strange city in a strange hospital, my family thousands of miles away. It took many people, many hours, and a few drugs to calm me down. But even when I could breathe again I was still an anxious mess. I wanted to go home and be in my own bed but I also wanted the pain to go away. That catch-22 you are always in when you find yourself in the hospital.

Many hours into my stay someone knocked on the door. I thought it was the nurse with more medicine but actually it turned out to be even better. It was another member of staff who peeked in and said “I saw you were missing a pillow, I’ll bring you one.” At first I didn’t really care. That’s very nice of him but it’s not exactly pain meds. But that pillow was the beginning of me getting to be calm. The comfort that it gave me in being able to relax my head and feel a little more protected, changed more than I would have ever thought it could. After that I realized that the person who had seen me as a person on a mattress without a pillow and actually bothered to go find one for me was the true hero of the day. They had taken into account the discomfort that arises in those situations outside my immediate medical emergency: the discomfort of the hard bed, being away from home, being cold and feeling exposed. That meant so much.

The technician who came in to take me to my scan a few hours later had the same kindness in his heart. He gave me a warm blanket while I was in the machine which he then covered me with afterwards back in the room. It was your typical scratchy hospital blanket but it was warm and it symbolized so much more. Those people could see I was scared, I was vulnerable and I needed comfort. Many people can see that without acknowledging it and not even get close to trying to solve it because that is a lot to ask, especially in an emergency room setting. They are busy and see hundreds of people like me and in much worse condition every day. But that night, that person gave me that extra bit of comfort and it made more of a difference than I could have thought.

Again, it wasn’t because it was my favorite duvet from home or anything, it was the consideration, the understanding and the kindness that the gesture of these items showed me. It gave me a more human connection to the people treating me and gave me “tools” to be able to be calm because I could rest a little more, feel some comfort and be warm. That night I felt the warmth not only from my pillow and blanket but from the people who brought them to me. Thank you.

The Fog II

The fog has been particularly thick these past few weeks. Maybe it’s the constant barrage of awful news of our world that is falling apart. Combined with our own personal struggles that seem never ending and yet so small when set inside the world that is crumbling around us. My health has been unpredictable and unexpectedly bad recently.

All these things contribute to the fog that seems to not be fading but just getting thicker with every day. I thought had plans for my summer but I can’t really see even a week ahead of me now. When I’m so fully immersed in the fog, I really struggle to understand what I am meant to do next. People ask you that often, whether it be in the context of your life in general or just what is happening next in the course of your day or maybe your overall goals- where you want to go next. In any context I am unable to answer that question. I have to wait for the fog to clear. At least that’s the excuse I give to myself. I can’t really think of any other way to explain it.

If your world feels foggy too then maybe we can reach out and somehow hold hands in the fog even if we can’t see each other.

Dear Useless Blob, here we are again.

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:

  1. Not being able to go to protests
  2. Not being able to go and help people out for fear that I would get in the way
  3. 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
  4. 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
  5. 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.

Dear Joy,

If you don’t laugh, you cry.

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.

Dear SickBoy Podcast,

I can’t even remember how I stumbled upon the podcast. It was late 2020, after I had spent almost a year isolating and fearing the outside world because of the “you know what.” Before I knew it, it was the only podcast I wanted to listen to. Jeremie, Taylor, Brian and their amazing guests became my company throughout that incredibly challenging winter. The first episode I listened to was about grief. It made me laugh and cry and I knew that this show was different. So, what a Christmas present it was to discover hundreds of episodes where they give their platform to people dealing with all manner of incredible challenges.

Their humor was what I was most drawn to. I have always used dark humor and (slightly inappropriate) jokes to get through the most difficult situations. I had now found people who were speaking my language. Not only that, but they were speaking it in a time where I felt the most alone and most disheartened. My mother was fighting cancer, my grandfather was dying of cancer across the ocean, and our hearts were breaking as we accepted that we would spend his last Christmas apart. Meanwhile, I was doing my very best to hide and push away my own health problems because between all that drama and the “you know what” there wasn’t space for anything more.

In a family where we don’t talk about the hard things, listening to Sickboy gave me an outlet. Sounds strange that an outlet can be found in not talking but listening– but it was incredibly powerful. I needed to hear that other people were going through similar things. I needed those conversations to show me that not only is it okay to discuss things, it’s even okay to laugh and joke about the difficult parts of life. I needed it to show me that other people had been through adversity and come out the other side, because there are times where it’s impossible to see the other side.

Almost every episode, no matter what condition or event was talked about, was able to validate something I had felt. Whether it be the frustrating struggle to be listened to in the over-burdened healthcare system or the isolation that you feel when you have something that makes you a little different from the norm. Listening to the guests was freeing. Plus, I have learned so so much.

It’s now about a year since I discovered this gem. I have listened to every episode, some a few times over. I await Feel Good Friday every week. It will make this next dark and difficult winter a little brighter. I have no sense of what 2022 will bring, or what direction my life will take–nobody really does. But I fully expect that Sickboy will be part of that year no matter what is in store for all of us.

In short, I really recommend you listen to this podcast, in case you didn’t catch that.