kindness – Letters From the Fog

Dear Fellow Patients,

I don’t know if I’m the only one, but I think A LOT about the last two years. The pandemic and everything that came with it changed my life forever. For many reasons.

Many nights I lie in bed and flash through defining moments of the pandemic. I think about my responses and my feelings at the time. I doubt myself; wonder if I was thinking the right things. I always come back to one specific moment. It is one of the biggest regrets I have.

I was sitting in the lobby of the oncology ward at the hospital. It was the height of pandemic panic and the chairs were strictly distanced and parted by red tape and angry red stickers on the floor. A young woman came and sat at the other end of the room. She got out her phone and called someone. And then she started crying and said “it’s cancer mom, it’s cancer.” Then her crying got my intense. I could hear her sobs and her words but she was many red stickers and tape away from me. I was locked in my seat, but I was feeling all her emotion. (I wasn’t just sitting on the oncology ward for no reason after all). I could feel my own eyes well up with tears as I was witness to this incredibly traumatic moment in this woman’s life.

Once she had hung up, she sat numbly for a little while, tears still coming down her face. Then she put her phone away, put on her backpack and walked away. After she was gone I went to the restroom and cried my eyes out. For her. And also for another reason. I was so incredibly angry at myself. That whole time I had sat frozen and terrified of the meaning behind those red stickers. Had it not been pandemic times, I want to tell myself I wouldn’t have hesitated to run over and give her a hug and ask her if she needed anything at all. I would have told her it was going to be okay even if it didn’t feel like it in that moment. But I didn’t do that. The rules were so strict at this point. We were all so scared of catching COVID. Especially on an oncology ward. I was afraid that I would then make her sick or her me. That maybe me violating social distancing would make her even more upset.

But two years later I still regret everything about that moment. I should’ve gone for it. I should have let her see I was crying with her. That she was not alone. Because in that moment she must have felt so so alone. I should’ve stepped over that tape and on all those stickers and moved the chair and been with her. Human to human. Allow her to cry on my shoulder instead of into nothing. Reassure her. Hold her and her terrible news to make it a little less heavy. But at that time, I didn’t. One might say that the fog of the pandemic was hanging over me so intensely that it actually prevented me from seeing what the right thing to do was. I regretted it immediately as she walked away and I still do.

I know how I would do it now, COVID or not. I vow to remember that young woman so that I can do the right thing next time. Isolation in times of crisis is one of the most painful things that someone can experience. Be with each other. Hold each other. Love each other. Family, friends, strangers. Everyone.

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.

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:

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.