If I Die Before I Wake

by Barb Rogers

  Two hours later, we're on our way home. I know I got the job if I want it. Tom says, “You don't seem very excited.” I'm not. Although the interview went well, I had no idea what went into being a parole officer: being on call all the time, having to carry a weapon, juggling huge caseloads. After explaining these things to Tom, he says, “What would you do if you could do anything you want?”

  For years I've had a secret dream. I've never said it out loud, but I trust Tom not to laugh at me. “I always wanted to be a costume designer,” I say and wait breathlessly for his response. He asks if I think I could make any money at it. I don't know. Over the years I made extra money turning old clothes into costumes, but to make a business out of it … I just don't know. I shrug my shoulders.

  My mind works furiously, and questions tumble through my head. I slip out of bed, through the sliding doors, and out onto the deck. As I stare at the golden reflection of the moon against the water, I consider the discussion Tom and I had over coffee when we arrived home. “God, can I really do this?” I whisper.

  Tom's strong arms wrap around my waist. He says, “Want to go for a swim?” I nod. One of our favorite things to do in the heat of the night, when the rest of the world is sleeping, is go skinny-dipping in the lake. I love the feeling of being naked in the water, of holding each other under the stars, laughing and playing like children. As the lake water sloshes around us, I wrap my legs around Tom's waist. He holds me close and says, “You can do this. If it doesn't work, you can do something else. You'll never know if you don't try.” My heart swells. I've never been with a man who believed in me the way Tom does—who wanted to help me realize my dream. It has been quite a day: starting out to be a parole officer and ending up imagining myself as a costume designer.

  By early October 1987, Broadway Bazaar Costumes is open for business. The past few months have been an excited whirlwind of activity. After ruling out several available buildings for one reason or another, we decided to utilize the old apartments on the second floor of Tom's two bars. While Tom and some of his friends carried out the big items—like refrigerators, old beds, and falling-apart furniture—from the four apartments that had been used for everything from a flophouse to storage, I scoured the thrift shops and garage sales for usable items to convert into costumes.

  Our days were spent cleaning and painting the biggest room at the top of the steep staircase, installing a dressing area and office, and getting the bathroom in order. All other rooms were left behind closed doors, available when I needed more space. Late into the night, armed with a variety of dyes, threads, and needles, I created the costumes and accessories to be rented out.

  Tom and I moved our bed into the guest bedroom. The master bedroom was converted into a workspace, where thirty papier-mâché heads sat here and there, drying out. One day, as I worked with heavy tinfoil making ears, noses, chins, and eyelids to be attached to the heads before I covered them with fabric, our neighbors and dearest friends, Tom and Jacqui, stopped by with a surprise. They had bought me a treadle sewing machine at an auction. I'd never used a sewing machine before. The simplicity of the old machine called to me. Besides, my fingertips were sore from pushing needles through fabric. I could barely wait until they were out the door to start playing with it.

  ——

  Tom and I stand in the middle of the room, admiring all that we've accomplished. Over a hundred costumes grace the walls leading up to the twenty-foot metal-tiled ceiling. My beloved sewing machine, which has saved me so much time and effort, sits off to one side. When I'm not busy, I can continue working on more costumes. Now, all I need is customers.

  Every time the buzzer goes off, indicating someone coming through the downstairs door, my heart speeds up and anxiety overtakes me. I wonder what people will think of what I've done. Will they pay money to rent my creations? Are they good enough? The buzzer sounds. I stare at the open doorway. It's Tom again. I sink back into my chair.

  A week before Halloween, I say to Tom, “I think I may have made a mistake.” Except for a few people who've wandered up the staircase out of curiosity, I haven't had one customer. He takes me by the shoulders, and says, “Are you having fun?” It has been great. I could spend all day every day making costumes and love every minute of it. “Yes,” I respond. He hugs me and says, “Then that's all that matters. The rest will just be gravy.”

  Four days before Halloween, the gravy begins to pour in. I can barely keep up with the customers, all clamoring for a custom costume to wear to work, to a party, to a haunted house. My head reels from all the compliments, my purse bulges with cash, and I'm having the time of my life. It's a bittersweet happiness, as I wish Jon was here—how he would have loved this! The last costume I made him was of a member of the band KISS. He was 13 years old. He was the hit of the party in the open-front black jumpsuit, his face painted black and white, wearing a black punk wig. Every time he stuck his tongue out as far as he could, we would scream with laughter.

  I have a plan. When we lock the doors Halloween night, we're going to buy leftovers at enormously discounted prices at the chain stores. I need more material, and especially accessories that I can't make myself. Excitement vibrates through my body as we amass our treasures. With the latex heads, wigs, feather boas, makeup, and other odds and ends, I will be able to give my customers a better selection. I can hardly wait to get started on the costumes I'm already making in my mind.

  ——

  After three years in business, I can't make costumes fast enough to fill all the orders for custom work. Everyone wants something special. I don't have time to breathe, let alone pray or attend meetings. I'll get back to it when things slow down. Today I have to hurry because I have a lot to do before Jacqui and I leave on a trip to Chicago to attend the Halloween and party trade show. I start down the staircase in my fabulous home, and halfway down, I think, damn, I'd like to have a drink. The thought stops me in my tracks. My mind's eye searches the house for alcohol. I know I made Tom get rid of all of it, but maybe he missed something. No, there's nothing … except the cough syrup up in the bathroom. My God, what am I thinking?

  Words I've heard my friend George say so many times at the meetings spring into my mind. “I'm an alcoholic. I'll be an alcoholic until the day I die, and if I don't keep something between me and the bottle, I will drink again.” What had I been keeping between me and the bottle? Tom? Work? My good life? Apparently, at that moment at least, it wasn't working. I drag myself down the stairs, pick up the telephone receiver, and punch in my sponsor's number. God, I hate to admit that after six years of sobriety, I'm thinking about drinking. Maybe she won't answer. She does.

  As soon as I hear her voice, I start to sob. She says, “It's the most normal thing in the world for an alcoholic to want to drink. You never needed an excuse before, and you don't need one now. Have you been doing meetings?” I admit I hadn't done any recently, but I am busy trying to get my business going, taking care of the house, Tom, and the dog. “Well,” she says, “If you start drinking again, you won't have to worry about any of those things, will you?”

  I tell her about my upcoming trip, that I have to leave early in the morning. She says, “Good. That means you have time to go to a noon meeting and an evening meeting today.” I barely get the word “but” out when she continues, “What could be more important than your sobriety?” I was going to do some shopping, get some new clothes for the trip. I guess I can wear what I've got.

  Two hours later, I'm sitting around a long table in the Al-Anon Club where they have several meetings a day. When the chairperson asks if anyone has a topic, I say, “I'm Barb, and I'm an alcoholic. I am living the best life I've ever had. There is absolutely nothing wrong, and I thought about drinking today.”

  16

  Graves'

  “SOMETHING'S WRONG WITH ME,” I tell my doctor. “I'm hot all the time. My skin feels like it's on fire. I wake up every day with my eyes feeling like they have sand in them.”

  He consults
his chart and tells me that my blood tests look okay, my estrogen level is good, but that some women simply have a harder time with menopause than others. I know this isn't menopause. I've begun to wonder if I'm going to be one of those people who bursts into flames while lying in bed. I saw a story about it on television. Frustrated by another disappointing appointment with the doctor and clutching the eye drop samples in my hand, I return to the shop.

  Halfway up the staircase, my heart is pounding out of my chest. I can't do this—not today. As I turn the closed sign outward in the window at the front door and drive slowly home, I wonder, why? Why is this happening to me now? I've worked so hard over the past eight years, cleaning and painting each room, filling them with costumes. I've won the respect of the costuming community by competing at the National Costumer's Association conferences and winning many awards. Big corporations and ad agencies from as far away as Manhattan have called, requesting specialty costumes. I've shipped costumes all the way to London, had some on the stage in Las Vegas. My business is thriving. But I think I may be dying.

  As soon as I get in the door of the house, I strip off my clothes. Every seam burns my skin. I know the neighbors will think I'm nuts because it's not even Easter yet, but I slip on a bathing suit, go out to the lake, and walk into the frigid water up to my neck. It's heaven. Numbness begins to set in. I return to the house and wrap a sheet around my body. I can't stand the touch of a towel. It feels like sandpaper. Needing to lie down, I stare at the staircase that leads to the bedroom. I know if I go up, my heart will race. Instead, I spread a sheet on the couch, lie down, but sleep won't come. There is something terribly wrong with me, and no one seems to know what. Tears spring to my eyes, soothing them better than any drops can.

  A car door slams. Tom comes in the back door. He knows there is something wrong because today I should have been setting up displays of rabbits and religious costumes for the churches and working on the Roman soldiers that need to be completed. I need to pull myself together. I have a lot to get finished. The phone has been ringing off the wall. “What happened?” he says and sits next to me. I fill him in on what the doctor said. He has no idea what to do, either.

  “I have to find something to wear to work,” I say. “Something that doesn't irritate my skin, and isn't hot.” At home, I live in a sheet and can barely stand it. At work, I keep the air-conditioning on so high in the main room that I nearly freeze the customers. It's the only way I can function at all. I assure Tom I'll figure it out. I'll make some adjustments, and everything will be fine.

  By Halloween I can't leave the main room, but I've hired two young women to help out, and my friend Jacqui is working with me. I must be quite a sight, dressed in a long, flowing Hawaiian-style dress, hair straggling, dark glasses. The dress keeps the rashes on the inside of my thighs from bleeding. My hair, which I have little of since the shock therapy, is falling out daily. My eyes hurt all the time, and light makes them worse. I've been back and forth to the doctor many times, but I'm not getting any better.

  Halloween, my favorite holiday and the time I make more than half of my yearly income, is grueling. I can't wait for it to be over. Since the business has grown, I have very few breaks from one holiday to the next. People are already reserving costumes for Thanksgiving and Christmas, and I've turned down a lot of custom work because I can't do it.

  As is our routine, Tom and I hit the stores that carry seasonal Halloween items, buy them out at huge discounts, and use them as fresh product for the following year. I know I shouldn't go with him this year, but it's not like the stuff will be there later. Against his wishes, I insist on going. At a mall in Champaign, Illinois, we walk through the door, take a few steps, and my heart begins to pound. I have to sit down. Tom says, “That's it. You're going to the hospital.”

  At Carle Hospital, the young intern asks me if I've ever been tested for a thyroid condition. I don't know. I've had a lot of blood tests, I tell him, but I don't know anything about my thyroid. He runs the test. We wait. Another doctor enters my cubical, an older man followed by an intern. The doctor says, “Mrs. Rogers, you have Graves' disease.”

  What is that? Am I going to die? Am I going to have to live the way I've been living for the rest of my life? “There are two courses of treatment I can recommend,” he continues. “We can remove your thyroid, or you can have radioactive iodine, which will shut your thyroid down.”

  “Don't I need my thyroid?” I say. The doctor assures me there is medication that will help. “When do I have to decide?” I ask. He and the intern exchange a knowing look before he tells me that he suggests I get it taken care of right away. I don't know what to do. “If you decide on the radioactive iodine, I can make a call and get you into a hospital that does that procedure … today.”

  I sit in stunned silence on the four-hour drive to Barnes Hospital in St. Louis. Tom touches my hand. I don't know how just the touch of his hand makes me think things will be okay, but it does. I'm scared. He knows I'm scared. But he also knows it has to be done. I can't go on the way I am much longer. The doctor said that without treatment I will begin to lose it mentally and eventually go into cardiac arrest. My mind screams: Why? Why now? Why, when I finally have a life, am happier than I've ever been before? What did I do to deserve this? I've been good, worked hard, and now this. I don't get it.

  As if he can read my mind, Tom says, “We're gonna get through this. At least we know what it is, and they can do something about it.” I'm having a hard time feeling grateful, but I force a smile and nod. What are they going to do to me at Barnes? Is radiation like chemo? Will it make me sick? I remember how Aunt Ruthie was vomiting so much she had to spend the night next to the toilet after she had chemo. I used to buy her marijuana to smoke before and after a treatment to help with the nausea. Will I have to smoke pot? I can't. I'm in recovery from addiction. What will I do?

  There is no waiting around at Barnes. Tom handles the paperwork as I'm hustled into a room for a quick examination and explanation of the procedure. It sounds simple enough … no needles, no machines. I'm moved to a sparsely furnished white room. A female technician dressed in protective clothing enters with something small in her hands. Carefully, she sets it down on the table in front of me. It's a lead box surrounding a white paper cup with clear liquid and a straw. “You need to drink all of this, but be careful not to spill even a drop. If you do, it will contaminate the room.” How strange that I can put something in my body that can't be loosed in the room. It's either this or they'll cut my throat and take my thyroid out. I drink.

  The technician says, “You think you've been sick, but for a while you are going to get a lot worse. As your thyroid shuts down, you'll have very little energy, you may gain weight, and look out for more hair loss.” I may as well shave my head if I lose much more. “We have to make sure the procedure works before you can be put on medication,” the technician tells me. I ask about my eyes. She informs me that my eyelids have retracted so much that they no longer close all the way, and that's why they are dry all the time. It seems that often the eyes will get better on their own, so I should wait awhile before seeing an eye surgeon. Eye surgeon? Who said anything about eye surgery?

  When I think we're finished, the technician hands me a card and says, “You have to carry this with you at all times. Try to stay out of places like airports because you could set off radar.” What?

  “You will need to stay as far away from your husband as possible. Don't fix his meals or do his laundry. Do you have your own bathroom?” I nod. “Do you have any pets?” I nod. “Stay away from your pet, and avoid being around children, especially babies.” My God, what did they do to me?

  On the opposite side of the car, in the backseat as far away from Tom as I can get, I consider all I've been told. I can't believe I can't touch him. And what about poor little Georgie? She'll be devastated. When Angel got so sick that we knew we were going to have to have her put down, our vet called one day and asked me to come to the office. He
brought out a badly abused dog that looked like our Angel. She had been beaten, starved, and thrown from a car and was obviously scared to death of people. My heart went out to her. We took her home, and after a lot of medical attention, love, and patience, she came to love and trust us. She won't understand why I can't hold her, why she can no longer sleep next to me. Overwhelmed by an odd feeling, I realize I'm pissed off. I'm tired of every strange thing happening to me.

  ——

  Life becomes a daily struggle. I have barely enough energy to drag myself off the couch. I can't go to meetings, have friends over, or get near my husband because I've got so much radioactive stuff in me that I could shut down someone else's thyroid. I'm tired, I'm lonely, and the anger that germinated that day in the back of the car has begun to fester. I look like crap. One afternoon, as I look at my face in the bathroom mirror, I pick up a razor and shave what little hair I have left on the sides off. A mohawk looks better than the sporadic clumps of thin hair.

  I hate doctors. None of the three doctors I see in Champaign have had a Graves' patient. I'm so sick of them saying, “Let's try this.” Nothing is working. Horrendous headaches plague me and last for weeks at a time. It feels as if my face is swollen— it even hurts when the wind blows against it. All of a sudden, I start having bad reactions to every medication they give me. The most recent is a pill for cholesterol. I awaken one morning and can barely see. I panic. Tom calls the eye surgeon, who tells us that the pills have caused progressive cataracts. She says they will remove the cataracts, cut my eyeballs open, and put in intraocular implants, one eye at a time. I can't believe a doctor is going to put stitches in my eyeballs. Two surgeries later, I can see, but the pain in my head continues.

  I reach a point at which I would do anything to feel better. If I thought dunking my head in a bucket of gasoline would help, I'd consider it. Sitting on the couch next to Tom, I say, “I can't live this way. If they can't do something to help me, I don't know what I'll do.” He asks if there is anything he can do. “Get me some pot.” Without question, he nods, gets up, and leaves. I know he'll do whatever I ask. Two hours later, he returns with the marijuana. I'm on the phone with my brother in Phoenix. He worked as a registered nurse for many years. I'm telling him about the headaches, my inability to take medication. He says, “You know, this may sound strange, but you might try castor oil.”