I AM YOU

I call Phoebe.

Restaurant week begins Monday. We have reservations at Tocqueville.

http://www.tocquevillerestaurant.com/

Phoebe seems "off" on the phone. I wonder if this dinner is a "poor me" dinner/obligation.

Phoebe explains that they've been slow getting back to me because Adam's dog died.

We'll talk on Monday.

I spend the afternoon with Siska (my old cleaning person) going through paperwork. I'm not dressed. I sit in my boxers and a stained sweater. I haven't washed or combed my hair. I order Siska about.

"Put this with the medicare file, put that with the screen actors guild file, put all these in a pile of doctors who seem to be suing me"

I lose my patience with Siska. When I ask to put a broken watch away in a dresser drawer and she puts in it the secretary, I sit helpless, steaming. I am intolerant of poor listeners even though I'm one myself. I find it maddening I can't stand up and put everything away in a mad rush. I must remain patient. The smallest request requires description and language.

After Siska leaves there is still time to pick up my bike from the repair shop on the upper east side.

I don't want to go. It's getting more and more precarious for me. Just walking around is a big, embarrassing, hassle. It's getting worse; my lower back, my mid-back, my hips.

I have changed. The color of my person has changed. I am not the same color. When I'm out, I resent the attention my gait, my canes, brings. My voice- a nice little finishing effect for unmitigated pity . The hassle. The frustration. A part of myself has disappeared. The public part of myself has disappeared.

I call Mattie to ask her if she thinks it's wise for me to go to the bike store alone.

I go to the Patients Like Me website.

Another PAL (person with ALS) is "with the angels", I read.

This prompts me to pull some pants on and go get my bike.

What's the worse that could happen? I could hurt myself?

I should preserve myself for all the good healthy times ahead?

When I get to the NYCE Wheels, Mark, the guy I deal with there, is alone. It's dark and cold outside but inside the store shimmers with optimism- so many glamourous, gorgeously crafted bicycles. Some of them fold down small enough to be put in the overhead of a train or plane.

I want to own one of these magically folding bikes. I want to fly to a cool city, unfold my stylish bike, and then ride it to my hotel. For this to happen, I will need a cure for my rare disease or my rare disease will have to come to an end.

But my brain, my wants, my outlook, doesn't function... like it used to. I simply don' t think too hard about these things. I let them float by (these images of unfulfilled hopes, unrealized scenarios) I let them glide by with out one, not one catching, snagging onto my working mind.

I only think about the next fifteen minutes. (Did I bring my gloves? Can I walk the bike to the street? Does Mark have any other disabled customers? I'm a little hungry. Have a swig of water).

The ride home is precarious.

I get stuck and fall against a car at Park and 86th. There is a comely couple getting into the car I am pinned against. They see my canes poorly tied to the back of my bike. I am in a position where I can't move. I will have to get off the bike. Getting off the bike will require a lot huffing and puffing. I will have to lean hard against the car and then use my arm to lift each leg out from the bike. It will take patience and skill. And then, once I am done, I will have to walk the bike for some distance until I can mount it again. This is becoming more and more difficult. The danger of being disabled and riding around in this city is becoming clearer. I feel foolish to be on a bike.

The woman of the comely couple asks in a focused, measured, adult, searching, overly polite voice,

"Sir, do you need some assistance?"

"No" I say, but I say it my muffled voice, my tired, unclear, unfocused voice, "no, I don't need assistance."

"Sir" she says again, ignoring my mumblings - maybe she thinks I'm drunk or mentally disabled - "Do you need some assistance?"

The young man walks around to my side of the car with concern and responsibility.

"Can I hold the bike for you sir?"

His measured politeness is insulting.

How do you explain to the frightened pretty couple that I am you. I am you but I have ALS. I have ALS so I use an electric bike. The bike has been broken for a month so I haven't ridden it and each day that I haven't ridden it I have progressed. My legs and feet and lower back have grown weaker. I'm just now trying to figure out if I can ride the bike. You would do this too.

I just got the bike back from the repair shop and I'm having a little trouble staying on the bike. I am you but I have ALS.

But instead I say, "No, I'm fine. I'll be fine. Give me a minute."

They stare, balancing in their polite constraint with the worry I might put a fist through their windshield.

I get away and walk the bike across Park and remount it (with some effort) on the other side.

I ride home through a dark Central Park. The glowing skyscrapers hovering over my ride - always a pleasure - always reminding me to be grateful, thankful to be living in this gorgeous city. And to be grateful that I am blessed to be the kind of person who prefers to bike home on a cold January night, even with ALS.