Acceptance and the Art of Chronic Illness

Approach illness as an experiment in staying present, in opening your heart in hell. Discuss how we fear our hidden pain even more than death, and how noting and mindfulness brings that pain to the surface where it can be healed.

– A Year to Live: How to Live this Year as If it Were Your Last by Stephen Levine

One of the reasons I talk about my health and illness publicly so much is because it helps me name and note where I am mentally when it comes to chronic illness. I have never been very good at verbally communicating my thoughts. Writing helps me understand myself. So much is discovered through writing for me. The vast majority of what I write never sees the light of day, and regularly once it’s written I’m at peace and simply shut the Office window without saving.

It’s how I process. I think it’s also important for people to have a glimpse into the reality of chronic illness, so sometimes I share, because I believe in honesty and authenticity (and not in the way it’s become a buzzword in the last year or two).

 

A Year to Live: How to Live this Year as If it Were Your Last by Stephen Levine came into my life at exactly the right moment, right as my health took a turn for the worse and when I was scared as to what the outcome of everything would be. 3 months later I was facing a future where the only certainty was that the future was going to be painful.

I’d gone searching for answers and hopefully a way to ease my physical pain. I learned that while I could hopefully manage it, that it would always be there. I learned I could lose my sight, my hands, my ability to walk. I met people who were in so much pain that they elected to have body parts amputated, and they were relieved. I met people who had gone through multiple rounds of brain surgery. I met people who were younger than me and were going to have feeding tubes for the rest of their lives. I met people who have since died from more severe cases of the diseases I walk around with. I have met people who later took their own lives.

I am quick to shut out those who demand I always present a positive face, because if they can’t accept the darker aspects of my experience, then they can’t accept all of me. And acceptance doesn’t mean that they have to like it, but a huge part of who I am is actually my illness. The whole I don’t let it define me thing you see a lot of people talking about is not possible for me. It’s okay to be defined by your trials in life.

Just like words regularly have more than one definition, so does a person’s life. There is no singular thing that defines me, but I would be lying if I said that my medical condition doesn’t define me at all.

I’ve had a lot of people, including my therapist, say they don’t know how I’m in such a good place mentally with all of this. I have 2 secrets…

First, a few months before this all took another and more serious downward spiral, I stopped resisting. I surrendered. I decided to stop fighting against my own body, mind, and fears. I allowed myself to be afraid, and I opened my arms in love to my fears. Giving the gift of compassion to your fears makes them smaller.  Sitting with your fear instead of hiding from it allows you to process it.  It allows you to find some peace with it.  There’s the whole concept of facing your fears, but it’s not simply facing them that needs to be done.  You can’t go into the situation fighting against your fears.  You have to name them, embrace them, give them the love that only paying attention to them can give, and then like a child growing into an adult, you have to let them go.  Allowing yourself to passively witness and love all parts of yourself, even that terrified part of yourself, can result in the greatest peace you may ever experience.

Two, experiencing pain, noting that it’s there, actually makes it a little better if you simply accept that nothing is permanent.  Let me repeat that. Nothing is permanent.  Not even pain that will be there until the day I die… Because eventually I will die, because everyone does.  I’m not afraid of where I go when I die, because if there’s an afterlife I’ve done my very best to live in the name of love and compassion.  I’ve done my best to grow.  If there’s not one, it’s not like I’m going to be around to be upset by that fact.  What matters more is that I have things in place for those that I love and care about, so I’m slowly getting together my advanced directive, living will, and laying out what I want done with my body in the event that I do die.

That might seem like a strange way of looking at things, but impermanence is my greatest comfort.  If there’s a known end, it’s easier to keep going knowing that it’s there somewhere.  It’s not wanting to die so much as accepting that eventually it’s going to happen.  Death happens to even the healthiest people in the world.  I have something in common with the healthiest people in the world?  I’ll take it!

This doesn’t mean that I’m never afraid.  Last night I confirmed my consult with a neurosurgeon.  I’ve been working on the paperwork about all my symptoms and my pain.  The feeling of being overwhelmed and the gravitas of the situation washed over me.  Holy shit.  I’m facing brain surgery.  I went so far as to express that on Facebook.

I’m regularly afraid.

I’m regularly worried.

I’m regularly angry.

It’s just that I’ve stopped fighting against those things. I experience them.  I acknowledge them.  And then I embrace the peace of awareness and let them go.  Sometimes that takes a really long time.  Sometimes it’s lather, rinse, and repeat.  Applying a spiritual practice to anything is exactly that: A practice.  Otherwise it would be called a spiritual perfection, and, well… I’ve got a long way to go.

I don’t know.  I may be thankful for my illness in ways.  I’m not sure I would know what can only be described as radical peace if I wasn’t constantly forced into situations that allow me to practice surrender, compassion, and love.  In turn those are skills that I’ve been able to extend out to others.  I let my illness define me, because instead of fighting the reality of being chronically ill, I’ve allowed it to shape me into a better person than I was when all of this started.

There’s absolutely nothing wrong or shameful about that.