Tuesday, March 22, 2011


At the moment we're all fighting something. Jack had a fever last night after a day with a sore throat. Iz's nose is super clogged. I've been having trouble sleeping as my head's been congested for a few days, my nose is just starting to run. None of this is major—sudafed, tea, hot baths and showers and we'll be fine.

My brother's fighting something too. Only for a him a fever means intravenous antibiotics administered when he's at dialysis, adding even more time to the time he spends there. 

I can't begin to imagine what he goes through. 

After FLOW, I started working on a book about aging: WRINKLE. But I couldn't go through with it because the reading and research freaked me out. Too much. The thought of my body giving out, falling apart, failing was terrifying. Yes, I know it's inevitable. Death is a part of life. I'm kind of more ok with that than the illness part. The not being able to rely on everything working properly part. The phone calls with bad news. The waiting for test results. The potential doctors visits and medications and hospitals. The dread of cancer. Stroke. Dementia. 

For as open and accepting as I like to think I've become, I freeze inside when confronted with illness. Panic takes over. Fear quietly glides into my heart and into my brain and I can't breath the same way anymore.

I can't live in fearless when it comes to the thought of illness. I live in fear. Rampant, overwhelming fear. 

I hold on so tight to everything being ok, at least the ok that I can live with. My ok means sinus issues I've learned to deal with, muscle aches and pains I ice and rest, menstrual migraines that split my head open for 2 days at a time. I can handle emergencies really well but the thought of longer term issues bring me to my edge. When Jack was little he had febrile seizures. They destroyed me. Every time he had a fever I'd lose myself in hysteria. I couldn't cope. I couldn't be calm. I couldn't find my center I was so afraid of what might happen. After 5 of them, 4 emergency room visits, an ICU stay, a neurologist, a cardiologist and endless testing, he was fine. It took me years to accept that. In fact, last night after I took his temperature, I realized that I finally don't freak out anymore, worried his eyes would roll back in his head as he lost consciousness. 

My brother doesn't have that ok. He deals, every single day of his life, with medical issues. He doesn't know anything else—he's been battling since he was a baby. I suppose this is his reality and perhaps he's got an ok status quo that works for him.

But, right now, he's not there. He needs a kidney. He needs to get rid of that chest catheter. He needs to get to a healthier place where his body can gain strength and heal a bit instead of fighting so hard against so many things. 

Damn. I with there was something I could do right now to make it happen. Today donating a kidney is just a concept. It needs to be a reality.

So, universe. Please get this riding moving again. It's time.

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