Thoughts from a Caregiver – Letters From the Fog

Dear Healthcare,

My body already doesn’t feel like it belongs to me at the best of times. Whether it be emotional or physical changes due to medications or simply due to a physical condition, I almost never feel in control. This is never more true than during medical appointments. I have encountered just one doctor throughout my life who asked for permission before each and every single thing she did. Even the small things: touching my shirt, touching my arm, taking a blood pressure. That made me feel like I was a human being who had autonomy over my body and all its parts. It made me feel like I had a part to play in my health rather than being someone’s science experiment. Those are the little things, which most people just take for granted at a typical appointment. Of course the nurse can take my blood pressure, otherwise why am I here? That’s not the point. The point is she is taking MY blood pressure. MINE. Therefore, I should be the person who decides when this happens.

During some appointments I don’t even feel human anymore. I am being moved around, poked and squeezed without ever having really understood why, let alone given my permission.

I believe this should be the standard throughout medicine even for young children. A lot of my medical trauma originates from being held down at doctor’s appointments as a child, not given a choice in what was happening to me at all, and not understanding why it was happening. Of course children cannot give their own full consent for major surgery or treatments because they are unable to understand the full consequences or their situation like the adults and medical professionals around them can. However, within these things there is still room for discussion and asking permission. Furthermore, in non-life threatening instances and/or casual check-ups there is definitely flexibility to have those conversations with parent, child and doctor/nurse.

Especially when there is anything that involves touching a child (or anyone’s) body it is crucial that they understand at their level 1. Why this is happening 2. What is going to happen exactly 3. That they say yes this can happen now. If they say no this cannot happen and are in a calm frame of mind, maybe it doesn’t need to happen right then. Maybe it can happen in a few minutes after a deep breath or a little further conversation.

It often surprises me that in 2022 healthcare professionals still don’t see the need to ask. They say to me (as an adult) “this is what we’re doing” “lie down” “put your arm here” etc. The other day, my arm was grabbed and forced over my head without even asking me to move it first or asking my permission to do so. This upset me greatly. If I had been calmly asked to move my arm I would have moved it, of course. If they had asked permission to position it for me, I would have let them. The way they chose to do it has a bad outcome for me mentally (and physically because it’s uncomfortable).

Consent, permission, discussion, patient inclusion, all these things and everything associated with them are crucial for a kind and compassionate healthcare experience. It can make it not only smoother for the patient but also for the provider as well. Fewer screaming children or tearful adults, such as myself, and better outcomes in the long run. The doctor’s office does not need to be a place children, teens and adults alike fear because they are going to get restrained and hurt by scary people with scary devices. There is another way. Adults don’t have to feel that fear either, whether it be with them from childhood or newly-acquired from a recent procedure. This way, people are more likely to attend their cancer screenings and other vital appointments and to engage positively with the healthcare field throughout their life.

So, if you are going to touch someone else’s body or do anything else to it and that person is conscious, ask them for permission. Explain what is happening and why and allow them to have the control of saying yes or no.

Dear Breast Cancer Awareness Month,

Bringing awareness to different diseases seems to be a big part of the “community spirit” within the chronic illness and Disability communities. My social media is filled with awareness posts all the time as I follow people with all kinds of different illnesses, all of which have their own special months. September is Childhood Cancer Awareness month and October is Breast Cancer Awareness Month. Both of these are difficult for me, but October is hardest because breast cancer has been such a big part of my life lately.

Bringing awareness is crucial. For funding and general decreasing of stigma and inclusivity etc. However, for someone who is already more than aware of the existence of these things, their awareness months are months full of triggers. I have a sibling who is a pediatric cancer survivor. They are many years out, and so September is pretty much the only month I start to think about that time in the past or possibility of recurrence or anything like that because it is all around me. My mother was diagnosed with breast cancer in 2020. That changed our lives forever and still impacts us today. That time period during her active treatment was highly traumatic for both of us, especially being in the middle of the pandemic.

Since then, I have myself been diagnosed with dense breast tissue and have “extremely high risk” of developing breast cancer. The benign lump sitting on my chest needs checking often and it is a constant reminder of what might be to come. In my nightmares I think about the day I will be brave enough to explore the preventative mastectomy. Therefore, it is only natural that whenever I see the pink ribbon I feel sick to my stomach. Whenever my Instagram shows me an awareness post of a young woman demonstrating how to check for lumps it makes me cry. Because of my life with illness, I do use social media to connect with people in similar situations and to be inspired, in a way. When I am in a stable place, I am able to read people’s inspiring posts and be happy for the people running a marathon after chemo or having children or ringing the bell or whatever they post about. But when I am in a fragile place, or my lump is hurting, or my mom is sick or I’ve just had an appointment or even with no clear reason, one post with the ribbon can send me into a full-blown panic attack.

Breast cancer is horrifyingly common. That is a fact. Checking for lumps can save your life. That is also a fact. Especially for young women who are not offered mammograms. We must be our own advocates. I am well aware of all that. The awareness campaigns are important and great. Rational Me knows that. Emotional Me is terrified of them. They make me think of my friends or family being in that statistic that is blared at us all month long. It makes me worry 100 times more about my own future and how I handle my cancer risk.

Sometimes these months also angers me because people see those short awareness videos and think they know what breast cancer is. I know I can’t claim to know either because it was my mother’s experience, not mine, but from the sidelines I can say it is so much more than finding the lump and saving your life. It is something that scars you in so many ways, scars your family and friends and changes your life no matter how hard you try to stop it from doing that. It completely transformed my mother and transformed me as her daughter as well. People’s view of it as “the easy” or “good” cancer is difficult to swallow. If only they could see us.

Lastly, during October the vast majority of the awareness is put on the “young person finding a little lump and having it all sorted out” storyline. There is almost nothing around about metastatic or stage 4 breast cancer even though that is what kills women every day. That is the stuff that even awareness campaigns are wary of touching because it is real and terrifying and much harder to stomach than the happy ending they try to portray. There are very effective drugs out there to treat Stage 1 breast cancer, this is true. Finding it at that stage is also a very important step, that is true too. But some people never find a lump. Everyone’s story is different. Metastatic breast cancer has much much fewer treatment options and yet it is often hidden away from the pink ribbon story during October.

These months are important. I am grateful to those people who are in a place to be able to share their stories and raise awareness and talk about breasts and lumps and everything else. I am personally not there. October is really hard for me and my family and I spend a lot of it hiding away and this is why.

But finally, check your breasts. Ask your doctor questions. Be a self-advocate always.

Dear University,

I was supposed to start my last year of college this month. Instead, I left university. What lead me to this decision was fighting the administration of my school for more than two years about preserving accommodations set in place during the pandemic for students such as myself who were directly or indirectly impacted by COVID-19 in way that prevented them from returning to traditional college life. I realized in that time that the pandemic gave institutions, including my school, a chance to pretend that they cared about vulnerable members of their community and then quickly forget about them. At the beginning of the pandemic, it seemed that maybe this crisis might change how people viewed Disability and chronic illness and we could come out the other side with more empathy and more accessibility. Instead, it seems that return to normal means return to ableism.

Students of all ages were affected by COVID. For students who already had stressors in their lives such as being at high-risk for severe illness, being a caregiver, losing family members to Covid, or struggling financially the effect was more dramatic. This stress is clear in numbers of students who left college early on in the pandemic. In fall 2019 2.6 million students started college in the US. 26.1% of them did not return in fall 2020.[1]

When my university transitioned to remote learning in 2020, I thought it was going to save me. My mother had been diagnosed with cancer, and I had my own health issues to deal with. With access to distance learning I could deal with all that and get a degree. The school was telling students that it had invested a lot of money in technology for remote learning and to accommodate students’ needs. I believed them, but soon found out that all the promises were short-lived.

After one semester of online learning, the university was ready to go back to “normal.” I learned from speaking with other students with chronic illnesses and other needs that the decision to abandon remote learning so suddenly made them feel forgotten. Even though we had been promised accessible learning through the crisis, the end of the crisis was decided by someone’s opinion; someone who failed to consider the people whose crisis was nowhere near over.

Like many students who were hesitant or physically unable to come back to campus, I felt pressured by the administration. One of the ways they did this was to inform me that I could not receive support from the school remotely. If I needed any kind of support with my studies or otherwise I could only get this when I returned to campus. This was impossible for me at the time- being in another country with a sick parent to care for during a global pandemic. Throughout the last two years in school, I was not included in class discussions, and there was more than one day when I sat at a blank screen when the professor forgot about me or did not bother turning on the computer that day.

My school was aware of my personal circumstances. In response to my many emails over the years I received the same automated email saying I should really “try harder” to get back to in-person learning. With all the tragedy that came with covid, we also had an opportunity to change for the better when it comes to access to school and work. This was also illustrated by the “mass-disabling” event Covid is. It is estimated that Long Covid is keeping up to 4 million Americans out of work.[3]

It is sad that despite all the promises early on in the pandemic, the return to normal somehow justifies the return to ableist attitudes. The idea behind accessibility is that all people can be included. In terms of remote working and learning, those who are not interested in that option are not forced to use it while people who depend on that option can use it with great benefit for everyone involved. Allowing me to continue to use remote learning could have saved my degree, but my university’s response to the “end of the pandemic” took that away. We should have seen that we were doing something good in paying more attention to accessibility and inclusion but instead it seems that the people in charge were never sincere about changing things. They were just happy when they could go back to the way things were without considering those of us who will never be able to do that.

[1] https://hechingerreport.org/more-students-are-dropping-out-of-college-during-covid-and-it-could-get-worse/

[3] https://www.forbes.com/sites/williamhaseltine/2022/09/02/long-covid-is-keeping-millions-of-people-out-of-work/?sh=4939f2d952cc

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.

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 ICU,

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.

Dear Invincible Adults,

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.

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.