Can You Believe This

Steve and I are sitting in the waiting room of Jeffery Greenstein, Head of Neurology for Graduate Hospital. It’s our first visit to help confirm the diagnosis of either a brain tumor or multiple sclerosis. Frankly, I don’t think either one of us knew what we were hoping for. As we are sitting there, the assholes that we are, we decide to peruse the literature available. I picked a book on living with M.S., for the newly diagnosed. I learned how to adhere bicycle handles to cutlery and replace buttons for Velcro. Not a bad idea, I thought.

The room was decorated Jewish republican; suitable with no frills and very little warmth. Plants were visible but still in the little green plastic pots that came with them. I guess they turned the price tags to the back where no one could see them. Clever.

Along the south wall was a man in a hospital bed complete with hanging apparatus. Next to him was a woman in a power chair looking somewhat like Kathryn Hepburn in “Suddenly Last Summer”. She looked indignant but proud. She kept herself very neat yet underneath sat an embarrassed frustrated woman. With her head held high she sat, waiting for her turn. The rest of the crowd was seemingly normal for the most part, some with Bluetooth nodules in their ears.

We knew something was wrong because Steve’s leg sometimes worked and sometimes didn’t. Testing showed the tumor and M.S. as possibilities. We both thought that M.S. was the Jerry Lewis telethon disease and still didn’t know what that was all about. We sat there reading about the things to do and giggled to ourselves.

“Can you believe this?” I asked Steve.

“I should cut all the buttons off your YSL shirts and replace them with strips of Velcro.”

As I looked at his face, for the first time I saw him concerned. I thought we would be dealing with a pinched nerve from standing, cutting hair all those years. But now I wasn’t so sure. The color in his face was different. The shit-disturber in him was silenced and concern filled his being. I had never seen him this way.

The waiting room was oddly quiet. Now I know why but I thought there should be an explanation offered. Everyone kept to themselves. Now if you know Steve, you know he cannot keep his mouth shut, especially if he is nervous. So we sit there, reading through the books and not knowing what to make of all this.

“Steven McGraw…” announced Yolanda, the office manager, I had no idea what we’d hear or what it meant.

We followed her to a little room with our MRI’s in Steve’s portfolio. Both of us tried to look at the plates but, really, what were we looking at? Dr. Greenstein was a pleasant looking man with a South African accent. He had no scent. He looked freshly boiled. Greenstein started the examination with little taps to the knee, tested the movement of the eyes and did the tuning fork to the fingernail thing. Steve stood and walked a straight line, still favoring the right side. The doctor didn’t talk a lot and had no emotion, making it hard to read what he was thinking. After making notations in his file he asked for the MRIs and stuck them on the light board.

“Well, it’s M.S. alright.” Greenstein said as he pointed to the butterfly shaped image of Steve’s brain. We were relieved that the tumor possibility had been eliminated but still didn’t quite know what this M.S. thing really was. The doctor explained that it was a disease of the central nervous system which was being attacked by the immune system.

There were a few forms of the disease ranging from relapsing-remitting where most people would have flare-ups once in awhile but with medication lived long and rather normal lives. The progressive form of the disease, which can be quite disabling affecting eyesight, walking, cognitive reasoning and speech, was a possibility but it was too early in the game to be sure which form Steve had. More testing was needed such as evoked potentials which measured the amount of nerve damage and whether or not the damage was permanent.

Both of us sat there listening to all the doctor had to say, trying to take in the information and not be panicked by it. We left the little room and scheduled testing appointments and a follow-up visit to discuss the results. We headed back to the train station (driving in downtown Philadelphia was a bit scary) for a bite to eat and a few beers before heading home. Somehow I had a feeling there was a lot of beer in our evening plans.

We sat in the bar of the train station and over cigarettes and beer we resolved ourselves to seeing whatever happened and dealing with it head-on. In hindsight we really didn’t have any other option, but it gave us some control over the day. I had no idea that we were soon to have no control over anything except how we were going to accept this.

Happy Halloween

I met Steven McGraw over the phone while I was working at the Elizabeth Arden Red Door Salon and Spa in Vancouver, British Columbia. I was getting sick and tired of cutting hair and had just recently ended a relationship with an Episcopalian minister in training in Seattle. Turned out the minister was a bigger whore than me which he parlayed into a sexual addiction. It smelled like bullshit to me. However, I was looking for a change actively and landed a possibility as junior booker at an international modeling agency.

Steve had called me one day from King of Prussia, PA, to try and convince me to stay with Arden. The management team had just changed and I should not make any decisions before I attended the annual training retreat coming up in Las Vegas. Steve was the director of business development for the company and I found him personally very charming. The retreat was in April where I met Steve.

In June, Steve came back to Vancouver to be the guest artist for the Grand Opening of the Red Door. On October 17, 1998, I left Vancouver for Bear, Delaware and a new life with Steve. We’ve been together ever since.

Steve was a lot of fun and never was there a lack of humor and care. When I moved to DE, he had outfitted me with new clothes for work, new underwear and shoes and the condition that I could make as much money as he but not more.

We had a fun, carefree life in the beginning. I couldn’t work immediately since my work papers weren’t finalized so I had a month to relax and get acquainted with the area and my new life. We liked to drink, have sex, maybe a little pot, coke, crank, but none of the hard stuff. We traveled to Jamaica a few times and indulged ourselves once in a while with three-somes and the occasional hooker. Steve was a work-out freak going to the gym five days a week starting at 5a.m. He ate well with the discipline of an athlete and became somewhat obsessed with fitness and building muscle. I, on the other hand, was a swimmer with a swimmers body. You couldn’t drag me into the gym. We were 28 and 33 years old respectively and we were lookers if I do say so myself.

Steve was one of the top producers of the company. He dressed in French-cuffs and Armani pants for his clients and always had a hilarious anecdote for you. His hairstyles were impeccable and in 2000 he was listed in Allure magazine as one of the top 13 stylists in America right alongside Sally Hershberger. Not bad for a boy from Salem, New Jersey. Stunning as it all was, Steve did have an ego. Just ask him. When the magazine review came out he was impossible. That celebration lasted one year. He was never busier in the salon, everyone wanted him. That was quite a time.

As hard as we worked, the harder we’d play. It wasn’t out of the ordinary to finish work on a Saturday, drive into the city and hit the gay bars after buying a new outfit and getting a hotel room. We liked to go to the Striped Bass for vodka and grapefruit juice and chilled shrimp, then over to the Brasserie for filet mignon, seafood, dessert and more drinks. We had our own box and season tickets to the opera on Sunday afternoon.

Our favorite game was seeing if we could land a straight man. We’d sit at the bar and prey on unsuspecting hetero’s and see how long it took to entice them. We had a good track record too, amassing quite a collection of straight guy underwear and no, we didn’t wear them. O.k., yes we did.

If anyone could say anything about Steve, it would be that he was insanely generous. He paid all the time and no matter how big the groups were. If we were sitting with total strangers by accident, he usually either paid for their meal or at least a few cocktails. There were times when we would scan a restaurant for unsuspecting patrons, pay their bill and leave not even knowing them. Steve hated people who were cheap.

His friends reaped the benefit of Steve’s generosity as well. Steve’s friend Ellen married Ted from Holland. They all met in a bar one night and went back to his house for an after the bar swim. Nudity, alcohol and fun always ensued. In fact when Steve met Ted , he thought Ted was for him and not Ellen.

One October weekend I got a call from a friend who was in town skating in Walt Disney’s World on Ice. I was excited to see him as he was my first Canadian friend to visit my new home. Daryl was nice enough to offer tickets to the show for all of us including Ellen and Ted’s two kids Luke and Taylor. Thinking back, I’m so glad we took the kids along. If you’ve never seen the Disney Ice Shows, please go! Be warned though, it is the gayest show on the planet. All of us found it hard not to laugh.

After the show we went back to the hotel where the skaters were staying and joined them for drinks and such. Daryl and I were catching up and he was telling me he wanted to do something else. He’d been with Disney for almost fifteen years and he was getting old. The skaters were younger and prettier and he was not.

“I just don’t want to give up the rock and roll lifestyle,” he said looking straight at me. The laughter filled my head as I remembered only and hour earlier he was wearing sequined leider hosen. I had to leave and get another drink.

Now where do a bunch of figure skaters and two hairdressers go when they get together? That’s right! A gay bar. Woody’s is a gay bar in Philly with not so bad food and a big dance floor. There we ran into a couple of guys from Nebraska who were new in town. At the end of the night the short fat one slipped Steve his number and said we should get together. A couple weeks passed and we were sitting at home on a Saturday night when we thought of calling Mr. Phone Number.

A short chit-chat later it was decided that he and his sister (who just happened to be mentally challenged) would make the trek down to Delaware. An hour later, they arrive with bags in tow as if to stay the night. Odd I thought but who knows. We sat around the dining room table getting to know each other when the sister decided she’d like to watch a movie. She and I headed downstairs to the movie room where she decided Charlie’s Angels would be a good flick to watch and I started the film.

As I walked up the stairs, there was a weird feel in the air. Steve and Mr. Phone Number were in a heated discussion over the D.C. Sniper. I can’t recall exactly how we got on the topic, but Mr. Phone Number got around to mentioning that some of his friends in Nebraska thought that he could be the sniper. Ha! Ha! We were only about half way through the second bottle of wine when Mr. Phone Number started acting really drunk.

He was slurring his words and getting louder by the minute. He then thought he was going to be sick, so Steve and I helped him to the bathroom. I went downstairs to get the extra room ready and came back upstairs. By this time he was acting all groggy and such and thought laying down would be a good idea.

We helped him downstairs and onto the bed. His sister came into the room to see what was happening. We assured her he was a little tipsy and just needed to rest a while. As the sister went back to her movie, Steve and I removed his pants and covered him up with a blanket making sure to surround his head with towels as we had just spent buying new sheets for the bed. They were gorgeous, expensive and never been slept in. The last thing I wanted was stranger puke all over them.

We came upstairs, poured some wine and started to discuss the event. I guess when I was downstairs with the girl, Mr. Phone Number told Steve he was in the Army and was doing work for the C.I.A. He spoke German and was explaining why his friends thought he could be the D.C. sniper. Odd conversation, definitely. Spooked by the whole thing, Steve and I gathered up our check book and wallets and put them under the bed. Crazy was in the house.

Minutes later the sister came upstairs and informed us that someone got sick in the sink. I went downstairs as Steve cannot handle vomit, and confirmed that he did eat and it was hamburger helper. I left it in the sink and went upstairs. Time to go to bed. Steve and I slept with the bedroom door locked that night.

In the morning, I awoke and remembered that crazy could still be in the house. I tiptoed to the living room and looked out the window. There was no car there. I felt relived. I went downstairs and looked in the bedroom. No one there and they didn’t even try to make the bed. I looked in the bathroom and was happy to see the puke cleaned up. Thank you.

It was October 30, the day before Halloween. Friday night and we had just got home from work. Cocktails poured and a toke or two, I started dinner when there was someone at the door. I hid the pot pipe and went to answer it. I opened the door to find one policeman and two in suits. They introduced themselves as detectives and asked to come in. Upstairs they sat us down and served us with a search warrant. We were under investigation for attempted rape.

What a Buzz-kill

Read anything about M.S. and you will find references to the environment, traumatic events, and stress just to name a few, as being triggers for the disease. I believe to this day that incident was the major trigger for Steve’s M.S.. Viral infections such as mononucleosis and bacterial infections can also challenge the immune system and cause it to hyper generate creating an autoimmune environment.

I say Steve’s M.S. because this disease is everyone’s and no one’s all at the same time. Each individual has their own symptoms and each one is different. Factors such as sensitivity to heat and imbalance seem to be familiar to everyone. Some have trouble with vision and speech others with cognitive reasoning. With Steve, it started in his leg.

After the initial shock of being searched and investigated for attempted rape; we hired a lawyer, gave samples of blood for DNA testing, and tried to carry on. The search warrant allowed the investigators to look for the date rape drug, any drug that could knock a fat ass fag on his butt. They also took all of our digital photography equipment, video camera and laptops.

As Steve and I sat in disbelief, the cops went through drawers, including the one that housed the mirror we snorted coke off of a month before. They took my passport which, at the time was my only federal form of identification. I have no drivers license and no American I.D. at all. The odd thing was it wasn’t like in the movies where the cops ransack rooms looking for whatever. They were methodical and very polite. When they located the pot pipe and pot they simply asked if we’d prefer them to flush it or take us in for possession.

We chose the former, of course. I think they knew we were scared shitless and not the alleged attempted rapists we were suggested to be. They even left the pot and pipe behind. I considered it to be a ‘sorry guys, get ripped and try to forget about all this.’ Two years later the cop across the street helped me shovel the drive after a large storm. Kind soul. Twenty minutes into the silent shoveling I realized it was the same cop that searched our house.

Back to the leg story. It was an unusually warm day in November when we decided to walk the five minutes to the Roadhouse for brews and beef. We had a couple of beers when Steve had to go to the bathroom. The bartender noticed him stumble a bit on his way and flagged him for being drunk.

“Have something to eat,” the little prick said. This twenty year old do gooder telling me when to eat. Granted I took it a little farther than I wanted calling over the manager who knew how much it took to get us drunk. Anyway. I stormed out of the restaurant swearing I would never step foot in that place. (Now I phone ahead and pick it up. The ribs are really, really good.) Steve stayed behind and talked to the manager. A while later, Steve walked in crying. Heat and alcohol. Two things that do not help M.S. at all. On the walk home his leg just wouldn’t lift. He had literally dragged himself home. We made an appointment the next week.

Thankfully, Steve was diagnosed by the first doctor he saw. Dr. Shmick in Pennsville, New Jersey. But it was a client of Steve’s who referred us to Greenstein. Steve started Avonex once a week a short time after.

The months that followed were challenging. Between waiting to be cleared from this bogus charge and testing for the extent of the damaged nerves, going to work was the only solace. A year and a half later, we received a letter from the New Castle Police saying to come and get our stuff.

Not word one of apology or explanation. Seven thousand dollars to a lawyer and not one we’re sorry. This single event had Steve thinking of suicide and anyone who knows Steve knows he is never suicidal, homicidal maybe but definitely not suicidal. We knew we were innocent.

One of my favorite conversations with the lawyer was telling him that if you have ever had a dick up your ass, you’d know. It wouldn’t be a question of attempted rape. You know when you have had a dick up your ass. Besides, Steve and I are devout ass men and this guys ass was way to big and hairy, even for us.

The good thing that came out of all that is that we started really saving money by not going out. That incident really put the curb on making new friends. We settled in during the week and only went out on occasion. Ruthann Minner made the state of Delaware a no smoking state and since we both smoke, we ate in a lot. Our piano room was coined Chez Buckley, a place where only people we knew were invited. You could drink, smoke, and eat your ass off.

There was a time where I wanted to bring back smoking. You know, one of those cooking shows where I would cook with a cigarette hanging out of my mouth just like my mama did. There is a defiant side within me especially when some one makes decisions for me.

Things never got back to a true sense of calm after that. Both our eyes turned a little blacker and negativity began to surround me. Steve was getting worse and had trouble driving us back and forth to work. Thank God we worked in the same location, so every now and then I did the driving with no drivers license. I had lost my license back in Canada for a D.U.I and never tried to get it back. The reason I couldn’t get a U.S. license will come later.

Work was getting increasingly hard for Steve. We tried to space the clients with more time for recovery, but the heat sensitivity factor was getting far too great. I found a place that made the ‘cool vest’ and packed extra ice packs for the day. It looked like the top half of a scuba suit with large pockets for ice pads to slide into. The ad suggested it was discreet but Steve had to wear his over his shirt because it was easier to take off. They don’t tell you with the ice pads, it weighed over eight pounds.

A little heavy for a nine to twelve hour day standing on your already shaky feet trying to balance a four pound blow dryer and not fall down. Clients noticed how, after their haircut, Steve would stagger off in a pool of sweat just to cool down and wait for the next one. Even Bloomingdales, the location we worked at, lowered the temperature in the salon, leaving clients and co-workers bitching and complaining.

Steve was never silent about his diagnosis. He felt the most important thing was to make others aware of this ‘orphan’ disease. The more he talked the less they listened. Sure there were maybe 5% of his clients that truly cared and are still clients of mine today, but there were others too.

My favorite was the client, and you know who you are, who asked,
“Now can I catch that?” This eighty year old cunt-essa with the face of an aging Las Vegas showgirl actually thought she could catch M.S. I told Steve he should of said “Yes, but it takes at least six months to really get in there.”

Steve was hurt and floored at the same time but was more astonished by the ignorance. Steve still likes to play the game of how will she die. He prefers the story of her driving down a snowy road and she flips the car. While she is writhing in pain a pack of wolves picks up on her rank old lady stink, gather around and just pick at her already decaying carcass. There is blood in her bleached blond hair and she is reaching for help similar to Rosebud in Doctor Zivago. Now I don’t agree with this type of transference anger, however, she was never my favorite person.

Anger, which all of us have, can make quite a good home in a person. Insensitivity, lack of understanding and ignorance are among the chief triggers of anger. I’ve heard it said time and again that anger is the opposite of love. Maybe true, but I think anger happens when fear is misdirected. The fear of losing your balance and falling, the fear of losing your sight, the fear of pissing or shitting yourself, the fear of the unknown, all can translate to anger. Anger and fear are healthy, but not when it consumes you.

This may sound cold, but I’ve met a lot of angry people with M.S. We’ve attended retreats, meetings, and pharmaceutical seminars and all read like a high school reunion. You still have the nerds, the brains, the assholes, the others. Steve and I were in the others group. We were the ones who never fit into any one group but could get along with all. And, just to let you know, everybody is angry to some degree.

These people feel ripped off. It’s not like they spent a portion of their live shooting up and having unprotected sex and, what a surprise, they get AIDS. It’s not like they’ve spent forty years smoking and, oh my God, they got lung cancer, and it’s not like they were five hundred pounds and, poof!, they have diabetes. It’s like this. They were productive, virile people who paid their taxes and lived their lives and BOOM!, their lives were taken away.

What a buzz kill.

A Year of Firsts

Steve and I were talking about adoption prior to all of this. Thank God that didn’t materialize. After the diagnosis, contrary to what Steve believes, I read a lot about M.S. on the internet. I’m sure all of us did in the beginning. The more I read, the more confused I became. Too many variables. Too many maybes. This could happen. This may happen. If this happens…if that happens…blah, blah, blah. There were too many individual stories. Too many professional opinions. I had to stop reading. I understood this was a personal disease. Our own little baby.

Now don’t go getting all pissed off and judge me, but I only really saw two options. Either the baby would wither and die or grow up and eat us out of house and home. I prayed this baby would die. Instead it grew and flourished like the pain in the ass sitting on your couch right now. Our baby was hanging around for a while.

Over the next two years, we saw a lot of firsts. The first bout with optic neuritis, our first flare-up, our first steroid hospital stay, our first experimental chemo-therapy visit and our first home care nurse.

The very first complication was the optic-neuritis. Steve’s vision was getting blurry so, of course, we went to the optometrist. A new set of glasses were in order. Her name escapes me but she was a lovely person. During the examination she removed herself from the room and called Greenstein with the concern that Steve had developed optic neuritis.

Minutes of doctor talk later and we were informed that a bed was being made available and he was to report for steroid therapy. Both of us were taken aback since it was a routine eye exam. She explained the importance of the therapy and we agreed. We drove home in silence not knowing what to make of it all.

We got home and had a few beers, trying to take it all in. Minutes later we received a call telling us the bed was ready and we could arrive at any time.

Just an aside to all caregivers that make this mistake.

Temper all panic with wisdom.
I have made some grand mistakes caring for Steve and the disease. I keep them separate. The person is the person and will always be the person. The disease is a greedy mother fucker and will force you to panic and as a result, screw with all involved. This is a disease of the central nervous system. The person cannot become agitated. You have to maintain a sense of calmness and control. I am not good at this part but I like to think I’m getting better.

Going that night was not realistic. We had to prepare. They held the bed till the next morning.

When we arrived at the hospital the next morning, we were put through all the paces. Checking in, providing the necessary insurance information and the question of,

“Do you have a living will, power of attorney?” Never quite got that far. This was all new to us.

I am aware that the U.S. health care system is in dire need of restructuring and that all workers are underpaid and over worked, but I expected a little more sensitivity. I would have liked,
“Is this your first time in the hospital? Really, well good for you. I have a few questions for you. Some may be a little disturbing since it is your first time, but, if you’ve never thought of dying, now is the time.”

Medicine is a business. Everyone has to make a dollar, I realize, but if I ever treated a client like that, I’d have no business. When you’re sick, they’ve got you by the balls. It’s their game and even though you may encounter those with sensitivity, know those are few and far between. It’s not the fault of the worker, it’s the fault that Doris called out and now that worker has to work a double, listening to everyone who’s scared, not knowing the process that a hospital must go through. Maybe a handbook on going to the hospital. They make you think it’s your fault not knowing.

Not knowing you have to check in at the little booth to leave your name and grab that all important number, just to sit and wait to have your name called and produce all your information, since you were five, to a total stranger labeled Donna, who asks you how you want to die. Maybe, just maybe, a little caring. Some association with knowing what I’m going through. After all, you see it every day.

We were lucky. With all the hospital visits, we’ve really only encountered a couple of total assholes on the admitting level. The nurses and staff at all the facilities we’ve visited have been more than outstanding.

A note for patients. The staff at any hospital, testing facility, or specimen drop off are good people. You get what you give. If you’re an asshole, they’re an asshole. If you make friends with them, your life gets a whole lot easier. Tell them if you’re and idiot and unsure of where to go. It breaks down all barriers and humbles them. Communication and humility get the good rooms and the good nurses and like a good restaurant, making nice with the waiter ensures you of not getting spit in your food.

This stay was dedicated to steroid therapy to decrease the inflammation of the nerve endings in the brain and spinal column. We started with 1500 mg for three days and went down to 500 over the next three days. A home care nurse was dispatched to train us for home steroid therapy to be followed by an oral taper.

At first, the change was remarkable. Steve seemed calmer and more alert. His vision improved and it seemed this treatment was the ticket. Home therapy was fine and had no problems with the Hep-lock and infusions. The oral taper was another story. Every emotion ever felt will surface with steroid therapy. We weren’t warned of this part. Steve had a mouth on him when he was well. He never failed to voice his opinion and he has the reputation of making some people cry. He’s not really mean just really spiteful.

During the oral taper he was convinced I was having an affair, and I was the laziest person in the world who brought nothing to our relationship. The first few attacks were devastating, my feelings really hurt and my energy really drained. Even after I learned of the ‘steroid rage’ that accompanies the oral taper, there were times when we broke out in an all out, heated fight. During one of these times I received a nice inch long gash on my forehead from a wayward remote control. That night he slept at his parents.

Professionals recommend to walk away during such times and, in theory, is probably the right thing to do. You don’t know Steve. His determination runs deep and when he finds one of your buttons he jumps on it repeatedly to the point that would make Mother Theresa slap the shit out of him.

Keep in mind though, that everyone is different. Some people have a milder reaction to steroids. For those who encounter this happening, give the whole treatment a week to ten days of manic episodes after the last oral steroid was taken. For those caregivers who drink, please do knowing that at any moment you may have to talk the person off the ledge or console the sobbing lover. And don’t forget the night sweats. Get your linens ready because you’ll be changing a few sets of sheets occasionally. Just bunker down and know it’s going to be a bumpy few nights.

Steve continues to batter the optic neuritis, and when it flares up, its a good indication that another exacerbation is soon on it’s way. We can depend on at least two flare-ups a year. The optic neuritis has now caused permanent damage and he now legally blind. We sold the car when Steve lost his drivers license and now depend on home delivery and rides from friends and family. Work became increasingly tough and on June 1, 2005, he was out permanently. Shortly thereafter, Greenstein suggested experimental chemo-therapy alongside the Avonex. Cytoxan together with Mesna to protect the bladder was the next step. This was during the time of the great Tysabri wonder drug. The FDA approval was pending and all progressive M.S. patients were hopeful this drug could be the one.

Steve received the chemo every month for six months. Then every other month for six months, then every three months, you get the point. Again, during the first few treatments, the results were almost instantaneous, and left use hopeful. Steve’s walking improved as did his vision. He was able to get around in the house without the aid of the cane, which he named Erica Cane. Days three to five were a little rough with day six being the total wipe out day. He slept most of the day and had little appetite.

During this time we applied for SSD knowing the chance of first time approval was low. I was the only one working but thankfully had excellent medical coverage that recognized same sex partnerships. United Health care has been excellent for us with quarterly check-ins from counselors just to keep in touch. This left Steve at home, alone during the day. In his heyday his low days were still filled with rambunctious energy fueled by a hyperactive mind. Although the disease continued to slow him, we weren’t prepared for such a dead stop.

Being home alone all day, unemployed, with beer in the fridge was a recipe for depression. He phoned the salon constantly, from ten to twelve times a day. He was on a Jerry Springer kick at this time so we relived every episode over the phone. Many times I would either phone and get no answer which meant he’d fallen and couldn’t get up. Thankfully his parents moved next door. They sold their dream home in Ocean City, Maryland shortly after Steve was diagnosed and bought neighbors house. I could count on both to check in and pick him up off the floor if needed. The drinking ended when he fell down the stairs, gouging out a chunk of his forehead. I had no idea there was so much blood in the head. We sat there in the emergency room waiting and bleeding when he looked up at me and said,
“Hey, let’s go have a cigarette.”

With no drinking, albeit a depressant, he fell deeper and deeper into depression. The Paroxetine wasn’t doing it’s job. We had a few conversations and decided we would call Greenstein and see if there was something else.

This was certainly the fun part. I any spouses, family members or caregivers have encountered this you should get a chuckle only because of the intense fear you felt during certain anti-depressant switches. Insist on remembering if a drug taper is needed between and change in medication. Steve was on Paroxetine 20mg and we changed to Lexapro. Did I know to ask about the taper. No. Should I have. Oh, yes.

I thought the steroid taper was hard, but by simply administering the Lexapro the next day caused such an imbalance in Steve that he went crazy. Violent outbursts and manic crying jags ensued for at least four days. These episodes would happen at any time and most of the time. I contacted the helpline for the insurance company and quickly learned the medication change should have been tapered off.

A call to the pharmacist confirmed this and I became enraged at Greenstein for the lack of information. When I called him he insisted both drugs were compatible and therefore should not have the affect it was having.

The lack of communication pissed me off so much we found a new neurologist. After the steroids and chemo side effects, not telling me of the possible side effects and watching Steve go even more mental than he already was, was unforgivable.

Steve was getting worse and not better. The patients in Greensteins office were looking worse and not better. During the last few visits to Greenstein, I noticed more patients in hospital beds, power chairs and walkers. I realize it is a doctors office and the sick go to the doctor, but during your routine three month appointments you tend to see the same people a few times in a row and develop a rapoor.

The same people were getting worse. Not that it was a direct reflection of the doctor, but shouldn’t you see some improvement if not in your patient but others as well? I mean the waiting list for this quy was months long and he was supposed to be the best in his field as indicated by numerous articles in frames placed around the office. Our visits with him got shorter in length and we spent more time with the assistant administering the chemo.

Messages took longer to return and I felt that Steve was getting lost in the shuffle. I realized the man was busy and I respect that, but he was the specialist because it is a special condition. It wasn’t as if we were visiting outpatients.

I took Steve to my doctor with the need for a new referral to a neurologist. I was seeing Dr. Brian Janney for a pilonidal cyst, a beautifully embarrassing, painful and disgusting thing. Nice guy, young and good looking, I knew Steve would like him.

Dr. Thomas Meuller took Steve on as a patient and our first visit was over an hour long, more time than we spent with the other one, all visits combined. He reminded me of an older Gary Sandy from WKRP in Cincinnati with a much flatter ass. He has a dry sense of humor and is into photography and music. Two of our passions. I just had a good feeling about him.

Reviewing all the information in Steve’s file, he immediately took him off the chemo and switched him to the once a day, subcutaneous injection, Copaxone. We left the office happy with the change of doctor and medication. We were happy for any change.

We just should have been more specific for what we whished for.

To Clot or not to Clot

If you’re reading this, you’ve most likely been through the insurance system. The endless searching for someone in network, prescription guidelines, procedures and paperwork. It’s a full time job by itself. I still had a salon to run and it was suffering. With my energy focused on making sure Steve was o.k., numbers were slipping. Steve was the top producer in the salon and was responsible for seventy five per cent of the business, his departure was noticed. The salon and I were keeping around fifty percent but you women know how faithful you are to your stylists. Ellen, close friend and co-worker had just buried her husband with esophageal cancer and had two kids to raise, so her head wasn’t really at work. Of course, everyone has their story.

I am a Canadian import here under the North American Free Trade Agreement and my employment in the US is conditional. Elizabeth Arden took care of all my immigration needs and I was here under a TN visa, renewable yearly. Seven months before Steve became too sick to work, I was informed that my renewal was denied. This was the time surrounding 911 and Canada’s refusal to participate in the war. It was Thanksgiving when I learned that I had 24 hours to vacate the country.

Panic set in. I couldn’t leave Steve. Frantic calls to Arden and lawyers let me know that if I left the country, I would be denied entry for ten years and have to pay thousands of dollars in fines. An hour later I was instructed not to leave the country and the company would re-submit my visa application under a different class. From a TN to an HB-1 visa renewable every seven years and, more importantly easier to convert to a permanent residency status. Never the less, until the visa was approved or denied, I could continue working. There was no guarantee the application would be approved, but it was a shot. The company said they would pay the fines as they valued my contribution to their business.

I was hesitant to tell Steve knowing this would upset him, not making life easier for either of us but I couldn’t keep it from him. We decided just to trust Arden and cross the bride when we came to it. After all, it would take time for the approval and we had more than enough to deal with.

We were in the thick of summer when we learned of Prothrombin 20210, a rare genetic blood disorder causing the blood to clot. Simply treated but if left un diagnosed was very fatal. One Saturday afternoon, I made my usual ‘I’m leaving work’ call when Steve started complaining about chest pains. Not knowing what to make of it, I called our neighbor who worked in the medical field. Upon her arrival she immediately recommended he be taken to hospital. Pains in the chest, most definitely, not good.

X-rays, cat scans and hours later, we learned Steve had a clot in his leg and one in his lung. He would have to be admitted and started on luvenox immediately. It was Dr. Steven Falchuk and Dr. Samii who pinpointed the genetic disorder. Six days in the hospital and a lifetime of Coumadin would remedy the situation.

A word to the wise. Genetic disorder implies that either the mother or the father or both carry the gene causing the disorder. Understanding what this disorder could cause if gone untreated, caused Steve to inform the family to get tested. Steve’s mother did not have it and his father refused to be tested and it was assumed that he must be the carrier. His brother, and youngest sister tested positive. His younger sister tested negative. This we found odd. If this was genetic, then all the kids fathered by Steve’s father would have to have it. We later found out that Steve’s sister was actually his half sister, a result of an affair had during a particularly rough time in mothers marriage. Juicy shit. Springer here we come. You never know what you’re going to learn when genetic testing is done.

Armed with Coumadin, we headed home. This diagnosis changed everything. No more falling, no more shaving wet, and bumping into anything. Coumadin thins the blood rendering the smallest scratch unstoppable.

With all that was going on at home and a frantic effort to keep the business as productive as possible, time passed. Around three years. During that time, the company had a turnover of staff. Most of the people I dealt with at the home office had left and I found myself dealing with more and more people who had no idea of my immigration situation or my ten years with the company I so believed in and trusted.

I received a phone call one afternoon at the salon. Someone new in payroll wanted me to send a copy of my social security card. Since I was not a citizen I did not have one. I had a taxpayer I.D. number that I used whenever I needed to supply one. That sparked a whole investigation on my immigration process.

Long story short. You know when you finally get a bug up your ass and decide to do a total cleaning of the house. You move the stove and find things you’d rather not find. You move your fridge and find papers, maybe a fork all sticky and gross. Well, my renewal paperwork fell behind the fridge and no one noticed. Not for three years. Arden had let my immigration lapse and I had been working and paying taxes, social security disability, all while being illegal.

I had no right to be in this country and was considered ‘removable’ by the immigration attorneys. Unless Arden chose to sponsor me and correct this, I could no longer work and live here in the US. This added to the stress as you can imagine. Not only was I driving to work without a drivers license (you cannot get a license without working papers) but now there was a possibility my company would not continue to sponsor me. Arden’s management policy had changed and the company was no longer taking care of immigration issues for those with less than upper middle management status.

I wasn’t aware of this change since I wasn’t notified. You’d think if a company policy changes, especially one that applies to you, you’d at least be informed. And it’s not like the company had hundreds of Canadians working in the US. There were only myself and another working in New York.

I didn’t sleep much over the three days it took them to deliberate over my importance and worth. What would we do for health care. Hell what would we do for income. Thankfully, Steve’s application for SSD was approved, it wasn’t enough to keep us afloat. It took it’s toll on Steve as well. Stress is not that great for those with M.S.

Monday afternoon, I got the call. Arden would sponsor me but I’d be responsible for all fees involved in applying. Lawyer costs would be mine but the company would recommend an immigration attorney that was familiar with Arden. Steve and I were relived and pleased that with the mistake being mostly Arden’s, they would do the right thing. We shouldn’t have been so stupid.

Every company is not without its faults. It was the year 2006 and still our company insisted on manual inventory counts. In order to get anything repaired the process was as follows;

1. Fill out appropriate form including serial numbers on items to be repaired.


2. Fax that form to my regional to sign off on and fax to Stamford for processing.


3. Someone in Stamford would then contact a contractor in my area for dispatch.


4. The contractor would come and assess the situation and contact Stamford with a quote for approval.

Approval was then granted or declined and the contractor would make a separate appointment for the repair.

All that just to get a fucking tap fixed. Imagine. A busy salon and spa running with a skeleton staff and the washer decides to stop working. Never take a clean towel for granted.

There were many complications and wasted paper trails that resulted in a lot of people who had some power yet never really made a tangible, traceable dollar for the company. Your regionals were truly the most useless. Coming up with promotions that never really worked. Idiotic retail sales motivators such as candy bars or movie tickets. No one gave a shit about the fucking movie tickets, show me the money.

Their pre-occupation with the above had them neglect the most important part of the business. Their staff. Not one letter from the company to Ellen to express the sympathy for the loss of her husband. Not a letter thanking Steve for making close to a million dollars with his own two hands. Not a letter showing any compassion for being an active, vibrant stylist only to now sit and feel left behind. With regard to the benefits Arden offered, it took eighteen months after Steve stopped working, to receive short-term disability money, and two years just to roll-over his 401K.

Arden was treating their tried and true staff terribly. The staff at our location decided we would give up vacation time and wages to Ellen after her husband died. I got the idea on Good Morning America when a group did the same for a co-worker. When I approached the H.R. department with the idea I was given an flat no. It would not be possible. Elizabeth Arden, what a great company to work for. Embarrassingly enough, Steve and I are both pictured on the recruitment brochure.

Looking back, all the red flags were there. I shouldn’t have been surprised with what would happen next.

I Need a Drink

I come from a drinking family. My fathers side were big drinkers. My mothers side, not so much. I am a drinker. Heavy at times and certainly during low times. I started drinking around the same time I started smoking, thirteen to be exact. I am no stranger to the bottle.

I really started drinking heavily when I moved to the U.S. There was a portion of time when I would sneak a few gulps in the morning before work. Nip out for a highball around four in the afternoon and really hit the sauce when we got home from work. My drink of choice was orange vodka and sprite. Over the course of an evening I could easily drain three-quarters of a bottle. Yes siree, you could definitely call me a functioning alcoholic. Seldom missed a day from work and most often made my deadlines and my projected sales.

I drank to go to the place in my head where everything was just fine. A lot was going on. I was illegally working in the U.S. for a company that wasn’t the most organized. My lover was sick and getting sicker from M.S. and I had gained over forty pounds making me feel even more desirable. I had a lot to drink about.

My morning and afternoon drinking stopped the same day Steve stopped working. With all the shit that was going on, I last thing I needed was to be drinking and driving. I needed to be hyper aware of my surroundings. I had a eighty minute commute twice a day, we needed the income and certainly we needed the health care.

Curbing my drinking made my evening cocktails more and more potent. I had to get home and get dinner and evening meds for Steve before I could crawl inside my head for the evening. If I got home at eight, I only had a couple of hours before I had to go to bed to wake up and do the morning meal and morning meds. I had to be out of the house by 8:15 a.m. for work at ten which left me little time for my drink.

I threw up every morning. I had diarrhea every morning. My nerves were shot, and I was sure I had developed sleep apnea.

When I developed the second pilonidal cyst, I had to see a doctor. I had one before that ruptured in the car. The smell was rotting death. The color of the discharge was nothing I had seen in nature. With the second, I was standing in the shower at three in the morning up to my ankles in blood and pus. Clearly something was wrong.

That’s when I met Dr. Hot, Brian Janney. Imagine me in sweats seeing this hottie only to show him the hole above my asshole that leaked rancid pus. I didn’t get any better than this. He ran some tests and discovered that my liver was taking the hit for all my ‘alone time.’ He asked me.

“How much would you say you drink?”

“Five to six drinks a day.” I said.

“What do you drink, wine? Beer?”

“Vodka.” I answered

“How much Vodka in each drink?”

“Depends on how tall the glass is.”

I had developed a fatty liver. Not all that bad. The liver is a very hard organ to injure but later I learned that once the liver is damaged, that’s all she wrote. My drinking days were numbered.

My digestive system was no longer tolerant to gluten and was most definitely wanted nothing to do with lactose. Bread, cheese and liquor. Three of my best friends but, I would miss my friend ‘open bar’ the most.

Then the call came, right as I was leaving work. My regional manager wanted to schedule a meeting with the entire staff on the last day in September. Something was up. She rarely stopped in the salon as she was three hours away and why did she need to meet with the entire staff.

When I got home, I made myself my new cocktail. White Zinfandel and Fresca. Hey, it wasn’t vodka and I needed something to brace me. I needed to find out what the meeting was all about and I knew I could coax it out someone. I phoned my last few friends in payroll thinking that someone at the home office would surely know a little about something. I learned that Arden was going through some big changes that affected everyone right down the line. From Stamford, the home office right down to the salons hidden in department stores.

Wednesday night came and our little regional manager arrived to give us the news. She brought with her three other people we later found out were the managers from the Arden closest to us.

I sat there in fright and awe when we were given a letter to read courtesy of our Senior Vice President.

It is with sincere regret that I inform you that the Elizabeth Arden Salon and Spa located at Bloomingdales, King of Prussia, will be closing on September 30, 2006.

We thank you for your hard work and patronage and invite you to visit our other location in Saks Fifth Avenue, Bala Cynwyd, Pa.

We were given one months notice, no severance packages and they would not pay out all existing holiday pay. They would only pay out one week.

Silence can be deafening. We all sat there not really realizing what this meant. I couldn’t believe this. What was I going to do? The others would get jobs just down the road, keeping the same clientele. I would be a change but all would be fine. What would happen to me? How would I be able to support Steve and I with no job? What would happen to our health care? Would the company still sponsor me so I could get another job? My head was going to explode.

After the shock of it all wore off a little, I had the chance to ask all my questions. The little blond blob of a manager sat across from me with the same stunned look she always has and with the same vacant smile I have since grown to loathe. Blondie told me that more certain than not, the company would keep to their sponsorship word and not leave me unemployable. I could keep the same health care plan for Steve and me for eighteen months COBRA and since the company didn’t pay for anything, our rates wouldn’t go up.

I cried all the way home. Sure, I’ve been scared before but not like this. This scare didn’t go away. Going by the Ardens track record of caring towards their employees, the blond bobs word meant nothing to me. It felt like someone had taken a razor blade and made a nice slice around the start of my forehead and pulled all the skin off my body leaving all my nerves exposed to the icy wind coming in from the window. I shook and cried, shook and cried unable to focus on any positive affirmation.

Sure enough, the next day I received a call from the Office of the COO. His assistant informed that they would not be sponsoring me for employment. When I told them I’d be seeking independent council, they suggested I do so. Arden used the attorneys at Epstein, Becker and Green in New York which was who I was using as well. When I asked them for a time line showing all correspondence regarding my immigration issue in order to get my lawyer up to speed, I was informed that their representation to me was a conflict of interest since their loyalty was to the company. Strike one.

The health care issue was also a lie. During my employ with Arden, my insurance for Steve and me was $320 a month. Under COBRA, my premiums would skyrocket to close to a thousand dollars a month. With a mortgage, and health care that would eat up eighteen hundred dollars a month. Steve had two thousand coming in from SSD which left two hundred for cable, water, sewer, heat, power, medications, co-pays, car payment and insurance and, oh yeah, eating. Houston, we have a problem. I needed to figure out something fast. Thirty days is not a long time to come up with something to protect your basic survival. Strike two.

I needed a drink. Strike three. I’m out.

Fall Out

The month of September was quite interesting. The core staff at Elizabeth Arden Salon and Spa located at 660 West Dekalb, King of Prussia, PA., Bloomingdales third floor had been there for years. There were three new additions but the remaining staff of eight were there at least six years, the rest for ten. Every stylist knew each others clients. It was the gentle blend of all personalities that make the salon work.

With my faith in large corporations dashed against the rocks, Bloomingdales was more than supportive. You see, Arden leased the space from Bloomingdales and paid them a percentage of the sales as rent.

The salon was viable, showing a thirteen percent controllable profit margin. We were more than just average stylists. The day after the big announcement, the management staff of Bloomingdales offered everyone positions within the store, which they were under no obligation to do.

Apparently Arden did not tell Bloomingdales corporate of the decision to close the King of Prussia location.

My guess is Arden wanted to stagger the closings throughout the region as to not loose the holiday dollars. White Plains, N.Y. was the most lucrative so it was to be the last to close. Bloomingdales, not pleased with losing the holiday revenue took a stand and in turn demanded that all Arden salons in the surrounding region, close on the same day as King of Prussia. Rumor has it that the President of Bloomingdales actually threw the CEO of Arden out of his office.

More so, the salon housed some of Bloomingdales top clients. The more time you spend in a store, the more you spend in that store. Next time you go into a department store or mall, count the number of windows. You are being shown what to look at and what to buy. The special feature of our location was that 99.9% of the time we were on time. I hated those salons that kept you waiting, making you think your time was worthless. You should be happy waiting for the great ‘Andre who will now reveal, spring’. The fag whips around the chair as flamboyantly as you can get, and baby bangs are back in for the hour.

Our clientele were a diverse bunch ranging from housewives to the upwardly mobile to the daughter of the up and coming to VPs, GMs and plain SUVs. Not a cheap bunch by any means and we all made a very comfortable income. More importantly, friendships were formed and bonds made.

Just to put things into perspective. There are very few occupations where people are allowed to touch you. Few of those are pleasurable. Think about it. When I go to the dentist, I will assure you I do not feel pleasant. I don’t like going to the doctor and, contrary to popular belief, I don’t enjoy the proctologist, but I do find a massage or facial and, yes, a haircut to be a nice escape. Hairstylists see you at your best and worst. It’s your birthday, get your hair done. Your mother dies, you get your hair done. Your son gets married, you get your hair done. Your prom, you get your hair done. You die…..you get your hair done. Co-Dependant relationships are formed. Telling the clients about the closure would prove most tiring.

Every client all day was informed of the closure. Most clients were on a four week rotation so most of them were told. Calls were made to the ones booking five to six weeks out, and the ones who booked once in a while were dropped by the wayside. Each one of us took turns at the appointment book to gather the most updated telephone numbers. We had to keep as many of our clients as possible.

I decided to convert the lower level guest suite into a shampoo room and salon, inviting Steve’s and my very best clients to our home for continuing services. I needed to supplement our income to ensure our survival. We were open seven days a week and you were guaranteed nibbles and drinks. Most of my clients were an hour away from where I was living and I needed their support.

The month wore on and all of us were feeling the strain of having to explain the story ten to fifteen times a day. On top of that, the blond blob kept calling with updates on how to liquidate the retail and reminding us to tell the clients of the other convenient location. Rub a lamp. Boxes arrived to pack up what didn’t sell and the phone rang. It was the blond blob.

“Now, when you have time, start packing up the surplus product.”

I informed the ugly bag of mostly water not to expect any boxes to be filled.

Blobby also wanted the answering machine message to be changed to inform clients of the closure. Not gonna happen. We were sent a sign to place out front of the doors directing clients of the change. I gave out her home office number instead. I felt the clients needed that personal touch and since the bag of cytoplasm was so in touch with customer service, I saw it fit to pass her number on. After all, protecting the interests of the company was my number one priority.

One by one, the clients were contacted and many stopped by during the closing days to offer encouragement and good wishes. It was the Cheers, Friends, Will and Grace finales all rolled into one.

On the last day, Steve came up to the salon. It had been over a year since he had been to the salon. Staff members of Bloomingdales were tickled to see him, wheelchair and all. We gathered at the morning meeting to announce the official closing of the salon. It was a lovely meeting with a cake from Costco and free coffee. It was all very ‘It’s Zoe’s birthday. Fran made cupcakes’, office send off. I don’t doubt the sincerity of people, but organized ‘events’ just irritate me.

As the day wore on, the Arden train was running out of steam. Of course it was a payroll day and numbers had to be reconciled and faxed by close of business. Like I felt like doing fucking payroll.

With the salon finally closed, we started to pack up ten years worth of shit. Our piles all neatly arranged, we sat down for a final toast to close the chapter. There were some tears but not many. We just kind of all went our separate ways. Very anti-climatic.

I took Steve downstairs and situated him in the smoking section of the staff area as I packed up the car. We said our last good-buys to people and started for home. Twenty minutes into the hour long drive home, my cell rang. Someone had turned in my bag I had left by the side of the car containing the company laptop with the payroll information.

The next morning I returned to Bloomingdales to retrieve my computer. I stopped by the salon only to discover some of the tear down already in progress. Funny how things are. You spend so much time building and building and in an instant, it’s all for not. Make way for something else. I had no idea what was next for Steve and I, but I was past the scared part. Now I was curious to see what would evolve. As I took a final tour of all the rooms in the salon, I got more and more pissed off. Angry at Arden for leaving me high and dry. Angry at Arden for the way they’ve treated Steve and overall just overly frustrated.

The only recourse I had was to lock all the doors within the salon. Several times throughout the years, someone would accidentally lock one of the treatment rooms or the office. Of course there were no keys to any of them so we had to figure out a way to jimmy open the doors on occasion. We got pretty good at it. I wondered if the blond blob could figure out the trick.

After all, I couldn’t leave all the inventory and employee information available for the taking. That would not be in the best interest for the company. I wish I could have seen her face. All in a hurry to pack up and get back to her family and she can’t get in any door. Hmmmm, pity.

It wasn’t much, but it was the last thing I could control.