I miss who I used to be

I used to do things. I used to ponder over fantastic ideas. I made sculptures, papier-mâché monsters, wrote poetry and silly songs. I used to go out at night. I used to ride my bike for miles. I used to walk across states through trails in the woods. I used to write. I used to be somebody else.

I remember a day in my youth when I walked through Golden Gate Park with my friend Kyle Linehan. I was pretty much broke, but I fearlessly let life deliver me into situations and I took them on and that day life left a $5.00 dollar bill in the grass and I picked it up and it felt like a fortune.

I remember eating fried fish with my fingers out of a cardboard bowl as I sat on a board walk by the water in the Ghirardelli Square area of San Francisco.

I remember playing cribbage at John Barleycorn's while "Peg Leg Eddie" and "Three Finger Pete" played chess. We all drank good beer and ate Chinese pizza.

I remember walking my dog to the park in the Seattle rain and then hiding from him behind trees as I whistled for him, waiting for him to come find me. He always did.

I remember dressing in an AstroTurf grass skirt as I marched on a hot day in the gay pride parade, not because of my pride of being gay, I'm not, but because of an event I was promoting to raise money for the Northwest Aides Foundation.

I once built a 30 foot long coral reef with fish that swam in and out courtesy of a few old record players. I built an 8 foot tall waterfall and volcano that released "smoke" and appeared to have minor eruptions.

I made hats out of paper bags and sold them to the Berkeley Hat Company. And others were displayed in an art show.

These are just some of the highlights of my years as a man who loved to live life. Today I spend so much energy just being part of the day to day and staying alive that I have no energy for living. My life is pathetic.

Oh, you'll want to remind me of how special my children are to me and they are but life was not meant to be a sacrifice of one's own joy and to substitute instead the joy of one's children. Both should be part and parcel of the process, yes? The greatest gift I could give my children is to be an example of how to enjoy life even while I struggle to keep us all afloat. But the struggle has become greater than just keeping us afloat. Just being part of the normal day to day is actually an effort now and that effort robs me of the energy and now I've settled into this rut, but I hate it. I hate who I am now. I miss who I used to be.

My name is Bil... and I have kidney disease.

Who Face & Cankles

It's been 10 months since I posted an entry into this blog. Not that I haven't had a at least a few interesting stories to share, but I just don't seem to get around to sharing these days. But as I sat here at work today with little to do I decided to make a long over due entry.

As you know, the honeymoon is over and my health has been clearly declining. I can still trick people most days into thinking there's nothing wrong with me, but I deal with unwanted fluids on a daily basis. At night they move from the little pockets they hang out in while I'm upright into my chest and even my face. This causes me to have frequent coughing fits in the middle of the night and to occasionally wake up with a face like a who.

 

 

 

 

On the other hand, while I'm standing upright for several hours or even sitting I often find that my ankles have swollen and the elasticity of my socks leave semi permanent indentations into my legs about 3-4 inches above my ankles.

 

I've had several instances of ER visits due to excessive fluids and have had a few extra dialysis visits here and there on a random Saturday or Thursday to help remove fluids.

 

In January I had my "readiness" visits at MGH in preparation for the impending transplant that will theoretically happen sometime this upcoming year. I had to meet with the whole team again, although they're not all the same people I met with three to four years ago. Several of these people had never met me before and upon meeting me they had to review their records because they believed I had been on dialysis for about four years, but I looked more like I was just about to start dialysis. When in fact I confirmed I was coming up on my fourth year they were surprised to see such a healthy patient. Also they were surprised to hear that I was still working 40 hours per week. they expect someone like me to be working 20 hours per week or less and quite frankly they expect someone like me to look sickly and weak... and usually old.

 

While I often feel pretty good for a guy on dialysis I do have good days and bad days, good moments and bad moments and sometimes even struggle with the idea of bothering to keep it all up. Recently I had a week where I was ready to just die... I no longer had the will to fight. Its tiring. Its hard. And actually there are times when its just downright lonely.

 

I've become so aware of my lack of joie de vivre. I used to do things. I used to have energy. I'd wake up in the morning ready to solve any problem thrown at me. I would create little projects to do, some of them things that needed to be done around the house others that were just fun, creative things to do. Now I get up in the morning and pee, which is urgent but minimal and a trickle at best. I see myself in the mirror and I know that's not what I used to look like. I make my way downstairs for tea and toast and sometimes in the middle of the preparation I break out into a coughing fit so severe I vomit. Sometimes I vomit so severe I have to sit on the toilet or risk crapping in my pants. While drinking my tea and eating my toast I rest frozen peas on my face to get the swelling to go down.

 

There was a time when I pondered if dialysis wasn't the better option than getting a new kidney. These days.... I can't get a new kidney soon enough. realistically its probably 6-10 months away, but I secretly wish it would happen today... or tomorrow... or the next day... I'm running out of patience.

 

My name is Bil... and I have kidney disease