Suffering

This morning I did some stretches and listened to Ludovico and it made me almost cry. Something about the rawness and fragility of that time. The complete vulnerability. That the only thing that could soothe was this particular orchestral track/melody, to take me far away. What it is to feel so, so vulnerable. Writing this in my journal this morning, I had to stop, overwhelmed with immensity of it all, and cry. I cried quietly; it was one of those times I didn’t want to be consoled, or even witnessed, it just needed to be. It was like saying to myself, that was really big, wasn’t it? And just feeling the bigness of it all.

I don’t really know what these emotions are. Maybe some kind of terrified gratitude? Sometimes seeing the fullness of something from the outside is more terrifying that being within it. (Acknowledging here all the caregivers, partners, and spouses. And children.) Doing it, you just do what you have to do; once you have stripped away everything else your focus narrows and you just get on with it. That’s how I feel, anyway. Say if, today, what you need to do is to eat and sleep. Either or both of these things might be hard, of course, you might be managing nausea or pain, but there are no decisions here. You’re in it, you just do the things. There’s no particular nobility in this. You get stripped back to your essence, and your essence guides you.

I feel lucky, or let’s say grateful, in that I didn’t suffer. Or at least I don’t feel, now, in my remembering, like I suffered. There were some really awful times, like the mucositis/colitis situation, and the almost-feeding-tube situation, but I feel grateful I didn’t suffer like many do. My doctor last week was surprised I didn’t have any lingering mouth ulcers, and could eat and drink fine. These are things to be grateful for.

I’ve been thinking about what it means to suffer, because the word is so loaded in the way we use it now. The dictionary says that to suffer means to endure death, pain or distress, but I don’t think we use it that way. I feel like you can endure pain, death or distress without “suffering” in the way we think about suffering. “She suffered through a long illness…” invokes a sense of pity or sympathy in us. Compassion is important (so important!), but enduring pain and distress is a part of life, and though there will be times we are really struggling, I don’t think that we are necessarily suffering when we go through these experiences.

The (genuinely) archaic use of the word “to suffer” is “to tolerate”, e.g. “She had suffered his bad behaviour for too long”, and this linguistic evolution makes sense to me. It feels like we have slowly altered this use of “suffer”, to include the expectation that we should always be happy and without pain, and anything less than this is to be commiserated.

To me, suffering is when this pain, death or distress overtakes your ability to cope, emotionally or spiritually. To me, this is when there is unexpected and painful change, or when the pain or distress becomes unrelenting and you cannot see a way out.

I was prepped thoroughly before going into this treatment about how difficult it would be, what the experience was going to be like, and what I could expect in terms of side effects. Almost too much preparation. But if you expect something to happen, you can be scared but you cannot be disappointed. There are side effects I’ve been prepped for also, like damage to my organs, that I do not accept and hope vehemently will not happen to me. News that I have decreased lung function or damaged kidneys will be fucking awful. News that your cancer is back is fucking awful. But I feel like once you get to a place of acceptance of that new normal, that pain (and suffering) abates somewhat. Change, and things that are unexpected, hurt.

I do not want to romanticise suffering, or “resilience”. And I certainly don’t presume what suffering is for any one person. Dealing with pain and distress is not something attached to individual “merit”. Many people, and I have crossed paths with so many over my times in the hospital, have much harder roads than me. For anyone reading who is having a time of it, what you are feeling is real. Don’t let me intellectualise your experience of it.

My mum called her cancer a gift, in that it was a hell of a lot better than dying suddenly in a motor vehicle accident, or losing your ability to communicate with your loved ones with a degenerative brain disease. I think I’m not quite there yet — it’s a long game to accept the long term impacts of this cancer on my life and the life of Mohamed and I — but to assume that it is all suffering is also not true. There is no binary good and bad in pain, death or distress.

I don’t think I’ll listen to Ludovico’s Experience for a while; I don’t want to dilute the memory it invokes in me. There can be something so visceral, like with smell, with a piece of music that takes you directly and fully back to the feeling of a specific time. This song feels like a special portal into a time that holds more insight for me than I can quite grasp at this point, and I want to hold that experience raw in my mind so I can revisit it with, possibly, the wisdom of time.

For now, I am trying to hold my expectations of myself at bay, go gently, and reengage with my life (in a way that erratically and often looks like overdoing it).