Dear Gratitude

Gratitude is forced upon me by the outside world

By people who want to tell me what my life is and isn’t

By people making assumptions about the way I live

About what I have and what I am lacking

When in reality

Nobody knows anything about others

Nobody knows what happened to you except you

Your gratitude comes from within not from a holiday or a relative

You do not need to be thanking the universe all the time

Simply for being alive

Because that life might be full of despair and anguish

And that’s okay

There will be periods of immense thankfulness

And periods of deep anger at the world

They come and go

They are not controlled by a schedule on a calendar

We cannot control the events or the feelings

We can simply live them all.

Dear Good Day,

I am so grateful to have you. You have been so kind to me today. After so many years with so many bad days, the good days shine so brightly. These are the days I never want to end when it gets dark because I don’t want to face the possibilities of all the things that could go wrong the next day or the next day after that. These days that are filled with laughter and sunshine and peaceful thoughts and love are so few and far between and so valuable. They change the way I see the world. They change the way I see my life and suddenly I want to be here to experience all this beauty over and over again. They show me that joy still exists even after grief and trauma. It is still out there and some days it finds you.

The good days also give me my deepest fears. They make my anxieties come to the surface. I am not comfortable with good days because I am so unused to the feeling of my body letting go. I am so unused to the feeling of something going right, of a stranger smiling at me or of winning a prize. I am used to the fight or flight mode, the disasters, the fighting off each other as it speeds towards me. When the day is good I know it will end eventually. I know something will happen to end the good streak and that something will hurt like hell. It will hurt so much more because of the good day before it. The contrast so sharp that it stabs you. The good days make me think back on the bad days and make me wish for no more days because the thought of the bad days to come in the midst of a beautiful one is so overwhelming. Sometimes on good days I want to quit while I’m ahead. I don’t feel like waiting around for the next tragedy or the next cancelled train or the next illness or the next downpour. I just want to rest in the peacefulness of this good day.

There are always going to be good days and bad days. Good moments and bad moments. Forever. For everyone. I have yet to accept this. In the dark moments I still believe that all my moments will be dark. On the good days I still feel a fleeting euphoria that cannot last. Temporality is part of life. Good and bad will both end and both will come again. No matter what I do or what I think or what I pray. I try to remind myself to hold onto the feelings that the good days bring. They are so much stronger now than before I experienced pain. Therefore, the pain was part of giving me the good. Without it, I would have seen this day as just average, not an amazing gift. As I write this late in the evening I am having a hard time giving this good day away to the night. Knowing that an unpredictable day is coming where anything could happen. It could also be good, I don’t know. I have to let go and just see. Meanwhile, I think it’s pretty clear I don’t take good days for granted anymore. I savor them and sit with them for as long as I can and then I wait for the next one to come around.

Dear Royal Family,

I am sorry for your loss.

The death of Queen Elizabeth II fascinated the whole world. As expected. What fascinated me was thinking of all the other people who died that day. That week. Today.

Both my grandmothers died tragic and traumatic deaths. They were both incredible women. They deserved so much more than they got at the end. They died too young and too painfully. They didn’t get to 96. Barely anyone really does. In their short lives they suffered more than I have the capability to comprehend. They didn’t get to lie in a castle peaceful and comfortable or surrounded by family.

It is only “natural” in the way our society works that this is what the Queen’s death would look like. Of course it gets the attention, the crowds, the days long mourning, the weeping people on the street etc. And yet, even though it is expected it is a little bit wrong. So many people pass away every day. To their families and friends they are the most important thing, they are so valuable and worthy. When I watch the carrying on after the Queen’s passing, I think of the people who died that evening who had no family around them. Those who will not even have a stone to mark their grave because they cannot afford it. How can it be that these things exist in such proximity?

When I watch the news with the non-stop coverage of her procession I think about all the “ordinary” people. Those who died during the pandemic, isolated and with no human touch at the end. Those who died bravely fighting disease with everything they had, desperate to stay with their families. Those who died too young and their families grieving while the world grieves. All the people dying in mass disasters in countries that neither the royal family nor anyone else ever even grants a thought to. I also think about my grandmothers.

Society is unequal. In Britain and everywhere around the world. The Queen’s death illustrated that to me in a way I wasn’t expecting. It is unequal in life and most certainly also in death. As if her life was worth more than anyone else’s. We should mourn her because death is sad and a family has lost a loved one. But she should not be mourned more than the others and their families. The fact that she is, is sad in its own way.

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.

Photo by Lisa on Pexels.com

Dear Hope,

Someone I admired very much used to say “always hope.”

On days like today where the fog seems unbearably thick, I try to cling on to that.

On days where the world’s problems seem too big to ever be solved. Where your role in this world seems incredibly insignificant, possibly even pointless.

On days where the way out of pain seems too long and you cannot see the light at the end of it yet. When the fog is obscuring that light completely. How can you know it is still there?

When there are so many thoughts running through your head that you wish for some kind of sleep just to find darkness and peace within it.

There must still be hope. You can ground yourself in the firmness beneath your feet or the openness of the sky above you. The sky is still there, the ground is still holding you up. There are still sounds of the regular day like wind, cars driving by, birds, footsteps. Whatever it may be. That regular rhythm is still out there if you listen closely enough. Look up at the sky and remember that it is still there and will continue to be for as long as you look up and see it.

No matter how foggy your world seems.

There is always something or someone in this big, big world of ours. There is something or someone out there. You just have to look up, or reach out.

Always hope.

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 Night Sky,

I found out the other day that sometimes you see a baby squirrel (see previous post) and now I have found out that sometimes there’s a spontaneous fireworks show or you happen to be in the exact right place at the exact right time for the lunar eclipse.

The last two nights the dark night sky has been lit up in some unexpected way that has allowed me a couple of moments of peace from the anxiety that plagues our every day. Last night I had a perfect view of the lunar eclipse– the first and probably the last time I see something like that so clearly. The word cool doesn’t really do it justice but nothing else really comes to mind. It was just cool. The weather was cool, the moon was cool, I was feeling calm and cool in myself as I watched it. I don’t really understand the science behind how that can happen, but knowing that would probably make it less magical anyway.

I used to be scared of the dark, of being outside at night. Things can jump out at you and you never know what is lurking. But lately I’ve noticed that those things that can come out of nowhere in the darkness can also be beautiful and full of light. Now I look forward to the peace and calm that comes when it gets dark and even hold out a little bit of hope for those rare night sky surprises.

I guess what all these things (including my favorite baby squirrel) have in common is that it is about looking for the good that appears every day (and night). It’s me realizing that if I take each day slowly and look around I can see small and large, surprising and beautiful parts of the world that I have missed up until now. I seek these out now because everything else in our world seems uglier and more difficult than ever before. Look out for the night sky surprises if you feel the same way.

Dear Garden,

Sometimes you see a baby squirrel.

The world is a scary place to be these days. The bad news is endless and our bodies and minds are struggling to keep up with the demands of daily life, which seem a lot more insurmountable than they did just a couple years ago. We are in a space where it can be very hard to get through the day. At least that’s how I feel most of the time.

The last few days of my life have been dominated by anxiety and fear and exhaustion. I start my days pretty slowly and without much enthusiasm, I have to admit. But today I went out in the garden and saw a red squirrel. And from underneath that squirrel emerged a tiny little baby squirrel (I found out after extensive squirrel research that they are called kittens!). The squirrels played around in the tree for a little bit, the kitten always close behind his mother. It was adorable. I might be overreacting, but that baby squirrel (kitten seems confusing just now) saved my day. Maybe it even saved my whole week. While I was watching it explore its home for the first time, feeling safe under its mother’s protection, I felt safe too. That little guy has no concept of what is going on outside our garden, probably not outside his nest in our tree. He was cute, innocent and perfect.

Someone once said something along the lines of “if you are looking for miracles just stop in nature.” Sometimes I’m too cynical to appreciate this because I think nature isn’t really miracles, it’s just biology. But sometimes you see a baby squirrel or a butterfly or a beautiful flower and then you think they were right. We humans can’t seem to get anything right. And somehow they get everything right. If you think of their place in our dark and violent world, they are actually miracles in their own right.

I’ve been stopping to look around a lot more as spring has come. Maybe it’s a little cheesy, I don’t know. Maybe cancer, covid and war has made me long for the miracles that nature can offer us. Just seeing that baby squirrel can make you think maybe there is a little bit of good still left. If I hadn’t gotten up today, I would have missed that. A baby squirrel probably won’t be able to save the world, but maybe they can save your day.

Dear Doctor, Please Don’t Assume I Have Time.

The other day I was at an appointment, and when we were trying to find a day after my bloodwork to go over the results, the doctor said, “You don’t have a job, do you?” I am a full-time student so I said no, not at the moment. Apparently, she didn’t catch the full-time student part, and then said, “Right, then you can come in this day at this time, no problem.” She had made the appointment before I had a chance to respond.

This might sound silly, but this exchange played on my mind for a long time afterward. Just because I am not employed right now does not mean I am not busy. Just because I do not have a 9-5 job does not mean that I should not be asked about what time might suit me best. Perhaps I was taking my sick mother to her appointment that day or visiting a friend or attending a lecture or having a different appointment. The list goes on.

There are a lot of reasons why this disturbed me. First of all, being chronically ill can most definitely count as a full-time job, in my opinion. I have many different doctors and appointments and it’s a struggle to make it all fit, especially when they all have this similar attitude when scheduling. Secondly, in that type of rushed and dismissive interaction, the doctor demonstrates to me that they do not see my time as valuable. They don’t ask whether I have the time or whether I am able to come at that time. In fact, it might be just as well because with the pressure on the system, it might be the only appointment available for a long time.

This brings me to my third point: that we as patients are treated in a way that forces us to be uber grateful for any appointment we are lucky enough to get. There have been other times like this one where I have said I really cannot make that time, and they kind of shrug and say, “Well then you’re going to suffer more because the next available time is three weeks off. You really should take what I’m offering.” This then leads me to panic. Should I take the appointment that I really can’t go to and thank the doctor profusely because I don’t have to wait in agony for three weeks? Then I will proceed to attempt to cancel whatever plans I had for the time of the coveted appointment. If I’m being very harsh, the doctor should actually be thanking me for my flexibility and/or even apologizing for the backup at the practice rather than making me feel guilty for taking up another slot in their schedule.

I have seen a lot of doctors and they have made a lot of wrong assumptions about me. Some are dangerous to my health, but some, like this one, are just insensitive and make me feel like I’m not valued as a person or a patient. Assuming they can see what my life looks like based on the fact that I do not or cannot work and thus assuming that I have nothing more in my life than following the schedule of appointments that suits them best makes me feel like they are not hearing me or understanding me.

I understand that healthcare systems everywhere are under extreme pressure at the moment. I know that appointment scheduling is really an art. But I would still very much appreciate the extra 30 seconds to confirm with me that I really can make that appointment, or even to ask what my daily life looks like, rather than make assumptions about it and in the process insult me by implying that I have an empty life.