Today I have my diagnosis meeting with the doctors at Columbia Prsebyterian.
I dress for my diagnosis in a pink Brooks Brothers shirt (the color of health!) like I'm dressing for a dance.
Excited, hopeful, with the buried subtext of death.
Then,
I bicycle to the subway.
It's a beautiful day!
It's the kind of day that invites a margarita after work.
Cold, but sunny and hopeful.
At Port Athority (my subway stop) I confront the long walk to the A-train.
Walking is frustrating.
I want to be done with the walking.
It's that bad dream. You run and run but you can't seem to make any ground.
I can make my walk look normal, but it hurts. I walk at the speed of a distracted six year old.
On the A train, my face is creased. I catch a girl observing my dour expression. I won't change it.
I make various attempts at prayer. I'm not sure what I'm allowed to pray for. I try to recall the teachings of Mary Baker Eddy.
I try to picture myself being able to accept any diagnosis and prognosis. My body is perfect.
The 168th street subway stop!
There is an elevator and a set of stairs.
I can't remember if I'm supposed to take the elevator or the stairs?
(I don’t want to make the mistake of starting a laborious climb up three or four sets of stairs)
I stop a lady in her commute.
"Do I need to take the elevator to exit?"
Without stopping or looking at me the commuter corrects "the elevator goes down."
So, I climb the stairs. I grip the railing like I'm scaling Mount Washington and meet my sister at Starbucks.
Starbucks! The global lost and found.
My sister looks great. (She has cut her hair)
Her skin is pink and well structured.
She is dressed smartly (too many patterns for me) but nice.
My sister and I have the same instinct, dress up! Repel the the scariness of the day with fashion.
" You cut your hair!"
"I got the Halle."
She means "the Halle Berry" and like magic I see Halle Berry's face replace my sister's and my sister is exactly right, she got the Halle.
We smile and feel good like we're going to see a friend's recital or play.
But my sister's cafeened shakiness, and my unwillingness to sit down, betray the life changing appoinment about to happen.
I'm late and I know it will take me a full 15 minutes to walk the three blocks east to the neurology building.
I think of Masterpiece Theatre on our way there.
We might be Kate and Nicholas Nickleby stuggling through Piccadilly Circus.
All the committed extras walking the crowded streets! Hotdog venders blocking the way
In the lobby, we try to get our passes from the young female African American security guard.
This is a different securtity guard than usual (I notice).
"We're here for Habib, Dr. Habib" I say.
The security guard's finger slides over a list of names that are glued to cardboard wrapped in plastic.
The security guard is having trouble finding the name.
"Um, try Mitsimoto." I offer.
Again the nervous finger up and down the card.
My bossy sister takes over. She leans over, cradles the card upside down and finds the name.
"There it is, Mitzimoto, 9th floor!"
I would be annoyed with my sister but I need to stay focused.
The security guard is relieved.
"I don't think she can read" my sister whispers.
We step into a slow poke elevator. The slow poke elevator allows you to contemplate your pending prognosis, and those of the haunted patients around you.
We get off and I check in at reception and my sister goes to the bathroom.
"Down the hall to the left I say (I've learned the lay of the land)
I sit in the reception area and notice that today feels different.
It's clinic day.
There is a hustle and bustle to the place; other patients, therapists, dietitians, visiting fellows and doctors.
Closer to what I would expect for my disease of the week TV movie. "At First You Fall" or "Falls and Whispers"
An older couple sits with me around the water cooler. They sit on separate sides so I'm not positive they're together.
The man is waspy, tall, in his late 50s'. He has a lean jauntiness that makes me think business man, mad about gulf, caring and comunicative husband. He was a catch.
He has money and lives in Larchmont.
A smiling Asian nurse or doctor enters carrying paperwork.
Now the woman speaks.
"Doug walks the long streach from the garage to the street every day, it's something he enjoys but I'm wondering if he should be taking that on?"
The woman is elegant, sweet and pretty (superb casting). Neither seem tramatized by where they are.
They are relaxed and polite, like their asking their ballroom teacher, "just how many sessions will we need before we can dance a decent walz at our daughter's wedding?"
I compare myself to them. My system is nervous, my attitude, rebellious.
Doug (I notice) has drop foot (like me). There is strap holding up his left foot.
Curious that the disease attacks just one foot. His is his left. Mine is my right.
I steal a picture of Doug's foot with my Iphone.
I also notice that when Doug talks, his voice is like mine only worse. Smoky, high, and slightly garbled.
Above Doug's head there's a painting of Lou Gherig.
(The painting is there to remind the staff that this is the man who is supplying us with our income) I think.
Lou Gherig smiles out in muted pastel oils.
I don't know anything about him.
To me the name "Lou Gerhig" instills fear.
Gherig: the legendary all American baseball hero brought down by a vicious disease and then his name becomes synonomous with the disease.
As if Parkinsons was called Michael J Fox's disease.
Doesn't seem right.
And the sound of the word! GheriG. The beginning G and the ending G. Scary. Just saying it will give you the disease.
My name is called and I'm weighed in. I've gained two pounds!
(See? I'm fine. I knew I was in the wrong place)
We sit in white room with florescent lights and an examining table.
"The same table where I got my spinal tap" I tell my sister.
I take a picture of it with my iphone.
The nurse tells us where to sit and informs me the doctor will see me momentarily.
"Will Dr. Ranjan will join Dr. Mitsamoto?" I ask.
Because of the bonding imtimacy of our spinal tap experience, I must feel like it's important that he be here?
(Ranjan never showed up)
My sister and I wait. We talk about things unrelated to the situation. But not too long.
Mitsamoto enters briskly in white lab coat and tie with an attractive European woman also in white lab coat.
The energy in the room changes instantly, like we've been waiting backstage for our favorite movie star.
Mitsimoto sweeps in with his handler and time is precious, so many fans to greet!
And in a way (I suppose) this is true. Mitsimoto IS a celebrated neurologist.
I stand to shake his hand and notice how much taller I am than he is, a tiny opportunity for power.
We all sit.
"Would it be alright if Dr Paris, who is visiting from Spain, observes our meeting? " he asks with his stagey Japanese accent.
"Of course!" I comply.
(This office is truly international. Japan, Pakistan, Ireland and SPAIN! all represented)
We make introductions and I introduce my sister (with the becoming Halle Berry haircut).
We could all be diplomats attending an intimate tribunal.
Mitsamoto begins.
He pulls out my reports and starts to review them.
I am prepared for the worst so I won't go into a spasm of grief and shock.
I am in suspended world. There is nothing before or after the words as he makes them.
He reviews all of the tests I have had since I began my adventure with a neurological disease.
Blood tests, MRIs , EMGS, more EMGS, more blood tests, a spinal tap and still more blood tests.
He tells me they have reviewed all of my blood counts, studied my various emgs. My spinal tap showed nothing.
My blood is normal.
He keeps repeating the word "normal" which to me is sounding bad because I am obviously NOT normal so I figure he's going to pronounce, since nothing ABbnormal showed up, I have two weeks to live.
He says that the weakness is only in my legs, NOT in my arms. ( I am happy with that because the neurologist at NYU suggested that it was)
He stops and looks up at me.
"So, do you have any questions? I don't want to proceed without your permission since the first time I saw you, you didn't want to be told certain things."
(I didn't want to be told what the disease was or why I was there)
WHAT? You're thinking. How could you go see a doctor and not know what kind of Doctor it was?!!!
I knew there was a nerological problem. I was worried that if I took on too much information in a short time that my brain and very soul would short circuit. I needed the diagnosis to come in chewable tablets, child-size mouthfuls.
So I saw a world famous doctor and I had no idea what he specialized in.
I am a queer one.
So, back to Mitsimoto.
"So, do you have any questions?"
I look at my sister and I say something or I ask something. Or she says something or asks something.
Dr. Mitsimoto answers that given these findings, AT THIS TIME, I do NOT have ALS.
I may get ALS, but right now I don't have all the signs that someone with ALS has.
I allow one bubble of giddiness to form below my ribcage near my gut.
My eyes change color.
The Japanese doctor stops and says,
"You look confused"
"I always look confused" (just keep telling me I don't have ALS)
He says that this is good news.
I DO have a neurological disease but of what kind he can't tell me as of yet. I may have ALS, but it is in the very ealy stages.
I see my sister taking notes with the ease of a stenographer.
And I feel like I’m sitting with a fortune teller ordained by G-D. You can't help but feel at the mercy of these doctors.The very language they use can change the chemistry of your body.
The drug.
He talks about this drug.
The drug cost $900 dollars a month.
It is effective with people who have the very, very, very, very, very early stages of ALS.
I might want to take it now.
So that if I do have ALS. I will be glad that I have taken it.
The drug extends your life by two months.
We meet with a PT for a fitting for my right foot with some kind of device.
Now I find my walk has improved substantially.
Two PTS ask me to walk the hallway. I spin on my heel and walk like a glib model.
I not only do not have a problem walking, I'm an exceptional walker.
My sister looks miffed and confused
My sister has looks skeptical.
You should have seen him outside "he was walking like Herman Monster".
I explain that I CAN walk inside but not outside. It's true! I plead.
The PT tells me I look great and I notice a swagger in my demeanor.
I'm liking the attention and now I've found a little of my charisma.
I’ve wearing a prop wedding band on the wrong finger. (from the reading I was in last week)
The PT tells me she noticed the wedding ring was on the wrong finger. She's smitten with me, I think.
We see an Irish nurse who re-explains the only available medication.
We see a dietician who is lovely and blond and sounds like Patricia Clarkson.
She offers the basics although she reiterates what Habib said. Do not lose weight.
Cholesterol takes a back seat to this disease.
She apologizes for not offering much help.
I get a prescription for a speech pathologist and for a PT. I'm feeling like I'm going to lick this thing.
My sister and I reemerge to what's left of the day. The afternoon light is crisp and golden. I feel light and punchy, like I just got away with something.
My sister and I test my outside Herman Monster walk. Turns out I lean forward too much.
We find her car and drive down Broadway looking for an exit for Riverside Drive.
I laugh recklessly and tell my sister,
"I can't believe the life I've led. Really something"
We talk about her hair. Clinique products. I feel a connection to my sister, to my family. Sitting beside my sister driving through the city of New York seems so familiar, like we are just where we're supposed to be. Just like the goofy good looking kid at the reception desk at NYU. My undiagnosed terrible disease seems far away, real, but smaller, manageable.
At my apartment, my sister gives me a three month supply of kitty liter and kibble for the cat.
I give her a shirt from Sundance. Sexy tight and robin's egg blue, waffle knit.
"It will wrap your nice breasts" I say.
"Yeah, what's left of them" says my skinny sister.
When she leaves, she hugs me, and kisses me on the cheek (with self conscious purpose). It's something we don't do in our family. My sister is trying to make small break-throughs.
I tell her, " I feel great, I know it's a little overboard" and she says "hey, ride the wave!"
I get the bus (which comes right away) to my bike and bike to work.
It's 6:30, only two more hours left of work.
I say to my supervisor " I'm sorry I'm late."
" It's Okay Charlie, we’re just happy to have you here." (He really did)
I walk to my cubicle and I notice an email on my Iphone from my friend Merrill in Utah.
The subject line reads "yippee!"
I sit down next to my miserable co-worker Will who has been on a drinking binge in his upper east-side apartment because his actress wife has left him after nine months of marriage.
(Penny Marshall's voice has nothing on Will's)
Every day he asks me how I'm doin' and I say "terrible".
And he says, "I'm with you."
When he asks me tonight I say,
"You know what? I'm pretty good tonight."
Because tonight I understand (like I never have before) the idea of being in the moment.
Because right now? Right now in this moment in my life?
I feel a lightness and a happiness that I haven't felt in six months.
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