Wednesday, September 7, 2011

exhausted

Every Wednesday for the last 18 months I have gone to sit with dying people. Well almost every Wednesday.

It's hard to get people to understand just how full I feel when I leave there at the end of the day. In essence my gig consists in welcoming with unconditional love a person or a family that have been told they only have a short time to live. I do this as part of a volunteer team in a beautiful spacious Victorian house with a nurse directing us. It is gentle and sweet and life-affirming.

You would think I would be able to find a similar sense of calm and love at home with my dear, dear partner.

But I can't.

I still wake up one or two times in the night to lean over and hear if he is still breathing. Since he has sleep apnea there are plenty of times when he's not breathing and - in the absence of any air sound - my brain concludes that the inevitable has finally happened. It only lasts a few seconds of course, if that. In that flash of a moment I get a glimpse of what it might feel like to no longer have Tad alive.

Just a glimpse. That glimpse is a mixture of pain and relief and devastation.

This morning Tad awoke and in his morning stupor told me with a loving smile: "My days are short here on earth. I'm not going to be alive much longer." I asked him how he does it, how he manages with a smile and he replied: "One minute at a time."

He and I both see that his appetite is going down and his fatigue is going up. We both see that his circulatory system can no longer hold the blood inside. We see that his nose bleeds, bruises, swelling, night chills and sweats are all due to the fact that his blood doesn't have any of its normal properties.

Sadly this causes him incredible pain, pain that even massive amounts of narcotics can't seem to attenuate. This is disappointing to me as I've always lived with the fantasy that pain is the one thing medicine can control. In numerous trainings and all the hospitals I've worked in over the years that is the one myth that keeps giving: "we" have the means to give people pain-free ends of life.

Tad's mental state is already slightly altered by the heavy narcotics - though he has lots of moments of clarity. I imagine that if we gave him enough drugs to actually make him pain-free he would simply sleep all day. As it is, we already counter the somnolence with a mild stimulant each morning.

So how do I find serenity? How do I transform this painful, overwhelming, tragic situation (that will end with me walking away and him a cadaver) into one where I sit by peacefully just beaming him love?

How do I keep my strong hold on love and life knowing that one day soon his body will be here but his personality, his essence will not?

And why is this so difficult to accept? Isn't death one of the most common things on earth along with birth, sex and illness?

I understand why we humans spend lots of time forgetting the fact that this body is only temporary. To live with that reality front and center every moment is exhausting.

1 comment:

  1. How do we deal? I don't know. We just do. Whatever's required of us, we deliver. I loved holding you, however briefly yesterday. I'll do that everyday if it helps. My heart is with the two of you most every hour of every day.

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