Category Archives: Venting

My Body, Myself

After my ALS diagnosis was doubly confirmed by UCSF and the Mayo Clinic in Rochester, I decided to send a mass email letting my friends and family know what was happening. Partly, it felt ridiculous to be putting this kind of information in email, but I didn’t know how else to share it. When you give people bad news, you often end up managing their reactions, even if it’s your bad news. That doesn’t upset me; I know how hard it is to say the right thing when there is no right thing to say. But I couldn’t imagine the countless conversations as I explained ALS, my newfound area of expertise.

So I opted for email, and I received a lot of beautiful and thoughtful responses. Maybe people didn’t know exactly what to say, but the notes were heartwarming to read. Many were telling me that they believed in me, that they loved me, that they were shocked. Even hearing that people were speechless felt like a form of support. I knew the feeling of being speechless.

One friend asked if I was mad at my body. It was an interesting question, and one I hadn’t thought about before. So I gave it some thought and decided that no, I wasn’t mad at my body. I felt like this was something that had happened to me, not something that I had done to myself. Fast forward three years and I’m still not mad at my body. I can feel the effort it’s making to work correctly, even as things get more difficult. Read More>

|Categories: Diagnosis, Drugs, Life, Vanity, Venting | Tags: , , | Permalink

The Parking Ticket

The dog had been in our possession for four days. He was small and cuddly, and peed wherever he felt like it. Every morning, sometimes as early as 4:45, he would whine to let us know he was ready for the day to start. It was time to take him to the vet, to get him vaccinated, the goal being that he could eventually graduate from the backyard, run around in the real world, tire himself out and maybe sleep until 6:30am.

Rob was working, so the vet visit was up to me. My assistant Rochelle, Scarlett, Otto and I got into the mobility van and set out on our mission. I was feeling short of breath, still not far enough away from my ICU visit to be purely comfortable in the great outdoors, and looking forward to my new anti-anxiety medication kicking in.

It did kick in, somewhere in the middle of the appointment, and I began to feel my personality returning. The visit itself was uneventful, except that obviously Otto peed on the floor.

When we got back to the car, there was a ticket on the window. Rochelle picked it up and handed it to me. $875 for parking in a handicapped spot with an expired placard. Unbeknownst to me, the placard had expired on June 30. It was July 15.

If you have a permanent parking placard, there is supposedly nothing you need to do but wait for a new one to arrive when the old one expires. But nothing had come in the mail, and I hadn’t even noticed. I don’t think about the parking placard very often. I drive around in a mobility vehicle, with a wheelchair and hands that can’t even reach up to greet a friend or new acquaintance. I was relying on the efficiency of the DMV. Cue insane laughter.

We went home and I stared at the ticket. It felt like an insult. Obviously an officer had placed it on the mobility van. Who the hell would be driving that thing if they didn’t have to? Read More>

|Categories: Life, Venting | Tags: , , , | Permalink

Here Comes the Sun

It’s a dreary morning in my head and out my window. The sky is so white with fog that I feel like I’m trapped inside a snow globe. Our outdoor furniture is dirty, the white chairs leaning against a red table, water drifting down their backs in slimy lines that pool at the bottom and speckle the chairs black. San Francisco summer.

It hasn’t been like this every day. Usually, the sun pops through, and turns the yard into a griddle, but I never wear sunscreen because I just feel like I have bigger things to concern myself with. So most days I sit  outside and sizzle my face a little more and try to meditate without concentrating on how shallow my breathing has become.

But on a wet and cloudy day, there are just windows for watchers, and that’s what I am. I can see seagulls flying over the ocean. I can see Otto pacing back and forth on the deck, head down sniffing at something through the wooden boards. When he sees me watching, he comes to beg at the door,  but there’s nothing I can do for him, and he wanders away.

The gloomy day either fits my gloomy mood or is the cause of it. It’s one of those days when Rob and Scarlett walked out the door and I felt like I had nothing left. Don’t feel sorry for me: first of all, I hate that, and second, I’m halfway through a cup of tea and I’m pretty sure there’s an attitude adjustment lying at the bottom of it. Read More>

|Categories: Life, Meditation, Venting | Tags: , , | Permalink