May 17, 2021

Nope. My Time is Not yet Up.

Listening to my Deepest Self

I must have perception issues. 

There I was, lying in a hospital bed with layer upon layer of skin peeling off, unusable hands, lips that were so dry I couldn’t form my words, antibiotic drip, and a catheter, but I still didn’t really think I was sick. Well—not really significantly sick. 

My wonderful doctor, Rosie, said to me sternly, “You are quite seriously unwell,” but still it didn’t sink in. I’ve since been told that those closest to me thought I might die. That didn’t even occur to me. Mostly, I just thought I was inconvenienced—it was a bloody nuisance to not be able to speak properly or use my hands, and I was constantly cold. I felt vaguely guilty for causing everybody so much unnecessary trouble.

My drug had stopped working, and this was an indication of what life might have been like had I not received any treatment. Rosie said that without treatment, I would probably have died by now. Sobering.

I have a new drug now that is working miracles for me, although, unfortunately, making me rather fat. The hospital experience has taught me not to take my wellness for granted. I have learned that I need to be aware of worsening symptoms and do something about them before they take over. It’s not enough just to label them “disease progression” and carry on as normal. On a yoga retreat, I learned two life-changing questions to be asked on a daily basis: How do I feel? What do I need?

I asked myself these two questions this morning, and the answers were interesting. Yoga and mindfulness have given me a love of inner quiet, and this morning, I realised that the worst thing about the constant itch that comes with Sezary is that itching and scratching are internally noisy. They take over my mind and pervade my every thought and action. They allow no peace. Their incessant chatter leaves no room for thought and no space to simply be. I can’t find that beautiful inner space where my consciousness feels like a deep well to be endlessly explored. 

The answer to “how do I feel” was: ambushed. 

The answer to “what do I need” was: silence. 

The times when sitting mindfully feels the most impossible are the times when I need it most. Go figure.

What is interesting about all this is the idea of inner knowing. I knew I was going to survive that setback, despite appearances suggesting otherwise. How did I know? That’s a question I can’t easily answer. Part of it, I suspect, is that I am blessed with a generous helping of positivity, so the worst-case scenario isn’t offered much room in my consciousness. This, perhaps, is the “great attitude” people credit me with. I don’t deserve praise or admiration for it. It’s just who I am.

However, there is a lot more to inner knowing than innate positivity. People on any sort of spiritual path talk of listening to their Higher Self. For me, that Self is more of a Deepest Self—a part of me that resides in the very depths of my soul, gently, patiently, quietly waiting for me to listen. Somehow, I knew that this interlude of extreme unwellness was temporary. My Deepest Self saw no cause for alarm.

Alarm. That’s another interesting concept. A stupid choice of word, perhaps, for contemplating mortality. Maybe that’s my mind’s attempt to reduce things to a manageable size, even though mortality is likely the most profound issue I will ever have to face.

“Facing it” is not necessarily something we consciously do. When I became aware of my four-year life expectancy five years ago, I didn’t sit down to intentionally work out a belief or an attitude. Rather, it was an ongoing process of osmosis. If you’re reading this, you’ll know that the process is not yet complete; it probably never will be.

I’m still floundering around, worrying about trivialities, losing focus, looking for answers in peculiar places. But I’m aware—always—that life is precious, and that every time I say “yes” when I mean “no,” I’m wasting a bit of it.

How did I know in that hospital bed last year that my time was not yet up? Well, my body was not telling me I’d run out of steam. I could look at the hideous face that looked back at me in the mirror and laugh about it. I didn’t see exhaustion, despair, or resignation in my eyes. I didn’t see hope either, or determination, or the fighting spirit people talk about when witnessing serious illness. I saw calmness and an unruffled conviction that really soon, I’d be back out in the world.

So do I have perception issues? Probably not. I am just learning the difference between inner knowing and outward appearances. What looked so dramatic from the outside seemed to my inner self to be just a small hurdle. I could perhaps have communicated this better and saved my friends and family some heartache. It’s not enough to know I’m okay…I have to put this knowledge out into my world. 

Perceptions need to be shared.



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