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Should I…?

Soooo, for the past few years I have been thinking about writing a book. A book about this little journey with ALS that I am on. I have written about 20 chapters. Sometimes I think, “Why would anyone want to read this crap.” But sometimes I also think, “Maybe someone should read this.” I decided to write up a little book treatment and get everyone’s opinion. So here we are. I would like your opinion. Your honest opinion... You can email me at
Here it is…

“And so it is.” Treatment.

It’s 2010. I’m living in New York in my dream apartment. I just started my dream job. My daughter was happy at her perfect all-girls private school. I had money in the bank. My boyfriend came to visit often. I was even getting along with my stupid parents. I had friends. Lots of friends, great friends. I was pretty, I was thin and, and I had great hair. And then suddenly the rug was pulled out from underneath me. I was going to die. Literally. I have ALS. Not only was I going to die. But before I died, my body would shut down on me bit by bit, I would be paralyzed and my lungs would fail me. The worst part is that my mind would be fresh as a daisy and I would experience every inch of the hell that was to come my way.

What’s a girl to do? A girl gets herself to Paris, quick. I had to escape my reality. In doing so, I found myself. I learned how to deal with my fate. How did I do that? I went to church, old churches, real churches. Not First and Calvary Presbyterian church of Springfield, Missouri. I needed the real deal. I visited every church I could. But not Notre Dame. The line was too long. God and I needed to talk. Possibly argue. I finally found one church where I think God answered me. I knew he wasn’t going to cure me, but I discovered that he was going to save me. He was going to show me how to get through this with a little bit of grace, a little bit of dignity and a little bit of time.

What was I going to do with the time that I had left? I didn’t know. I’ve always been a fly by the seat of my pants kind of girl. I wasn’t going to change. I wasn’t going to become somebody else. I only know how to be me. And in being me, sometimes it’s fun, sometimes it’s funny, sometimes it’s sad, and sometimes it’s ugly. A nun told me that I needed to leave a legacy. I didn’t know what that meant. I didn’t know how to do that. I didn’t realize until two years later that my legacy was my daughter, Grace. With the time that I had I left, I needed to get Grace ready. I needed to get her ready for life without me. Mentally, spiritually, physically and financially.

What do they say? A funny thing happened on the way to the bank? Well, a funny thing happened on the way to the bank for me. While working on my “legacy” a funny thing happened, lots of funny things. It’s called life. It just so happens that my life is funny. Even with ALS. Or maybe it’s because I choose to make it funny. Like when the nurse needed to take my temperature and accidentally put the thermometer in the wrong spot. That’s funny. Accidentally, “motor boating” my caregiver is funny. Singing Anne Murray’s song, “You Needed Me,” at the top of my weak little lungs in the car, while my French husband watched in horror is funny. Ignoring a phone call from my daughter while doing so is even funnier...

On the other end of funny is sadness. Extreme sadness. Life altering, I don’t trust God anymore, excruciating sadness. I’m not sad for myself. I’m sad for others. Try telling your child that you’re going to die. That she won’t have a mommy. That I won’t be there for the happy times… when she graduates, when she gets married, or has a baby. Worse, I won’t be there when she needs me. I won’t be there when a boyfriend breaks up with her and she’s crying, when she doesn’t get that job, or when a friend betrays her. This is what kills me. I’m sad for my friends too. Try telling your best friend that the laughter’s going to stop. Try telling your husband that all the plans you made for when you are old, he would now have to do by himself. This is what kills me. This is what makes me cry in the dark, scary hours of the night.

 There have been some surprises along the way. Friends and family have surprised me. For the good and the bad. People show their true colors and character in times of crisis. I have been pleasantly surprised by some of my friends and devastated by others.

 I’ve learned a lot about the medical world as well. Primarily, like what the word neurologist is. That was a fun lesson to learn. Doctors have surprised me as well. I thought all doctors were good and kind and had good intentions… not so. Doctors are people too, and some can be assholes. Right, Dr Scelsa? Some can be angels. Right, Dr.Siddique? Medical insurance has been a fun ride too. I did not know what the word “deductible” was before ALS… I do now.

 I’m not afraid to die. I believe in God. I believe I’m going to heaven. And I have plans. First up, I’m going to save every child that is being or physically or mentally abused. Secondly, I will watch over my friends and family. Selected friends and family. Thirdly, I will float through every gorgeous old apartment in Paris and look at all their stuff. Lastly, I will watch all of my friends have sex. They’ve asked me not to, but I’m going to. I am also going to fly and smoke cigarettes.

 What have I learned from all this? Is there some great moral to my story? Trust me, if I had a choice I would take it all back and put myself in that apartment in New York with my daughter. But I can’t take this journey back and to tell you the truth, it’s not that bad. I have learned more in the past three years than I have in my entire life. I have accepted my fate and like my Arabic tattoo says, “and so it is.”

Parisian Apartment. Part Six. L'appartement: High Ceilings.

High ceilings. High ceilings. High ceilings. Repeat. High ceilings. High ceilings. High ceilings.
Keep this mantra going in your head when you’re looking for your Parisian apartment.
                                                          It holds the key to happiness.

In typical Parisian Haussmann apartments, the floor with the highest ceilings is the second floor, the étage noble or bel étage. Basically what this means is that the rich people get the prettiest floor. By the way, in Paris, the second floor is actually the third floor. Anyway, on this hoity-toity floor, the ceilings are the highest, the windows are the tallest, which meets the light is the best. The higher the floor, the lower the ceilings, the less the light. I live on the third floor and my windows are more than 8 feet tall. Can you imagine what the second floor is like!

Even if you have a teeny tiny Parisian apartment, if you have high ceilings, you have everything. With high ceilings, you will most likely have floor-to-ceiling windows. This also allows you to have dramatic skyscraper curtains! This is par for the course in Paris. So much so that at the typical department store, BHV, there are ready-made skyscraper curtains. No custom curtains needed. They are already there for you.

 On a side note, be careful what you wish for. With these high ceilings and the beaucoup de light, you are definitely, definitely, definitely going to need blackout curtains. For every room. Otherwise, you will not get any sleep.

High ceilings create the illusion of space. My apartment is not that big, but it feels grande, because my ceilings are so high. With all of these Parisian apartments and the high ceilings, I feel like Parisians decorate vertically as opposed to horizontally. Everything is tall, tall, tall. This creates drama, drama, drama. This is why you barely have to do anything to have a great apartment in Paris.

What are you going to do with those tall walls and ceilings? Embellish them, of course! Stay tuned for Parisian Apartment. Part Sept. Boiserie.

Parisian Apartment. Part Cinq. L’appartement: Hardwood Floors

Like I said, it’s not that hard to have a gorgeous apartment in Paris. You just have to look for the basics and 99% of the time they are available. There are seven basics to look for: Hardwood floors, high ceilings, French windows, moulding, hardware, a balcony, and a fireplace. Then there are the extras: updated kitchen and updated bathroom, but don’t hold your breath for this. Other extras are: a terrace, washer, dryer, good closets and extra fireplaces. Let’s look at hardwood floors today…

There are three basic types of hardwood floors: Chevron/Herringbone, Parquet de Versailles and plank. Do not take an apartment with newly engineered hardwood floors. Gross. It will ruin your whole Parisian apartment vibe. Don’t even get me started on carpet. Your hardwood floors are your base and you build from there.

  I started to do a little research on the history of hardwood floors, but I nearly bored myself to death. Most apartments have the Chevron/Herringbone pattern. The colors can vary from raw, grey, low gloss, high-gloss to dark brown to a very dramatic nearly black. I like all of them.


What I like most about old hardwood floors is the creaky sound that they make. You don’t get that with tile or carpet or marble. Also, designwise, hardwood floors are the foundation for any decorating style. You can go modern, eclectic, historic, anything! Any type of rug will work with hardwood floors (except ugly ones) from aubusson, Persian, sisal/seagrass, zebra, vintage Berber, Flokati or even a cool Kelly Weartzler modern rug.
After you check off hardwood floors on your list, next up, stay tuned for Parisian Apartment.Part Six. L'appartement: High Ceilings. 

Parisian Apartment. Part Quatre. L’ascenseur.

Don’t mock me. I’m serious. The elevator is très important. First of all, when looking for a Parisian apartment building, make sure they’re even is an elevator. “Ascenceur” in French. Don’t just assume that there will be an elevator. You are not in Kansas anymore, Dorothy. This is a whole new ballgame. I swear to God, even some six-story apartment buildings in Paris don’t have elevators. Can you imagine schlepping your luggage, your groceries, your strollers and in my case, a wheelchair up six flights of stairs. Six flights of old, worn, curvy, slippery steps. What if you were uh, drunk? You wouldn’t make it. Not going to happen. An elevator is a necessity. I will say though that my daughters little apartment was on the fifth floor with no elevator for her first year of college in Paris. Good news… She never gained the obligatory freshman 15.

After establishing that there is an elevator, you need to make sure that it is a good size. This is going to be a feat. One time, I looked at an elevator of an apartment building that I was interested in and the elevator not only would not fit my wheelchair, but it would not even fit a slightly fat person. Sometimes, you can barely get two skinny people into the elevator at once. A decent sized elevator in a Parisian apartment is a luxury!
I prefer the Parisian elevators that are open with a wire cage. I feel safer. I don’t trust Parisian elevators in the first place, so I feel if there were to be a problem I could scream out, and maybe someone would hear me. Maybe not.

Let’s recap. We have the proper arrondissement, the front door, the concierge and now the elevator. So far so good. Next step is to actually see the apartment. Stay tuned for Part Cinq. L’appartement

Parisian Apartment. Part Trois. La Concierge.

This is one aspect of Parisian living that you don’t want to mess around with. The despised yet somewhat venerable concierge. Apartment buildings in Paris often have someone living in the building who is the overseer/guardian/concierge. She’s kind of the boss of your building. Most likely, she’s a total B*tch. Why? Because she can. What can you do about it? Nothing. I have, however, had a few concierge that are sweet and act as overprotective grandmothers.

I found this funny article  about 19th-century concierge:"If you entered through the double door of the carriage entrance that lead through the front portion of the apartment building to the courtyard and somewhere, usually tucked near the steps, you found a cramped dwelling illuminated by the second-rate light of the vestibule. In this badly-ventilated cubicle there lived the Parisian Concierge. Although considered the lowest of the low on the social scale, she wielded a considerable power over the tenants. The concierge loge was the hub of a spider’s net, its threads reached not only into every apartment in the building but extending out in the street. The tenants were well-advised to remain on her good side. Failing that, their mail could go astray, and their reputation be tarnished by malicious gossip through the neighborhood. Her eagle-eye noticed all the comings and goings, especially past ten o’clock in the evening, when the main door was locked and late comers must ring the bell."


"Unavoidable as well as indispensable, she supplemented her meager wages by performing all kind of services for the tenants and often pocketed bribes for keeping secrets. To be at the mercy of a coarse uneducated woman necessarily created resentment. No creature has been more mocked and maligned in literature. Caricatures of the era picture her as a repulsive harridan, either sickeningly self-ingratiating or loftily dismissive, depending on the importance of the tenant.
In fact, the concierge’s lot was not an easy one. Representing the landlord, she had the unpleasant task of extracting past-due rent, evicting non-paying tenants and bear the brunt of their anger. At the approach of the term, her vigilance redoubled, as insolvent tenants tended to slip away. In the old tenements, her quarters–often a single room without running water and ventilation–were nothing more than a stinking cramped hole lacking in privacy. At the beck and call of others every hour of the day, she often had to get up at night to unlock the door. In addition to collecting rent, distributing the mail, cleaning the courtyard, hallway, and the stairs, she scrubbed and cleaned for tenants who could not afford a maid. Running errands, passing on messages, and other innumerable petty services were rewarded by tips, scrapes of food from festive tables, and the occasional discarded piece of clothing. The most profitable day was that of Saint Sylvestre (Dec. 31) when the voluntary–but obligatory!–gratuity was expected.

The repulsive solitary old woman was of course a cliché. The post was often filled by a middle-aged couple. Since the only financial advantage was a free lodging and one per cent of the rental income, the husband had to have an outside job. Scarcely visible, he remained in the shade of the concierge lore."   –

 There is a great book regarding concierge called The Elegance of the Hedgehog.
"The Elegance of the Hedgehog (French: L'Élégance du hérisson) is a novel by the French novelist and professor of philosophy Muriel Barbery. The book follows events in the life of a concierge, Renée Michel, whose deliberately concealed intelligence is uncovered by an unstable but intellectually precocious girl named Paloma Josse. Paloma is the daughter of an upper-class family living in the upscale Parisian apartment building where Renée works.
Featuring a number of erudite characters, The Elegance of the Hedgehog is full of allusions to literary works, music, films, and paintings. It incorporates themes relating to philosophy, class consciousness, and personal conflict." Wikipedia

When you are apartment hunting, it’s best to sort of interview with the concierge. If she doesn’t like you and you don’t like her… Keep looking. This is not the apartment for you. If you do, however, feel a good rapport with the concierge, you are in luck. Stay tuned for Parisian Apartment Part Quatre. L’ascenseur.


Parisian Apartment. Part Deux. La Porte.

Oui, the front door. It’s more important than you think. It’s going to set the stage for your Parisian apartment. You’re going to go through that front door every day. Your friends and family will use that front door. You will be judged by that front door. So, when looking for apartments, remember that first impressions are everything!

            Find one that you like? Good. Now, stay tuned for Parisian Apartment Part Trois. Le concierge.