If I Die Before I Wake (12 page)

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.”

Castor oil … he must be nuts. I hate castor oil. Mom used to give it to us in our juice when we were little. I fed mine to the dog, who constantly had the shits. “Make a hot pack with castor oil, hold it against your face, and massage it in at night,” he continues. “It's a natural anti-inflammatory.”

Within hours after I apply a steaming wet washcloth with castor oil, the pain is tolerable. It's three days later and the swelling is gone. I've seen so many specialists who wanted to cut my face open or medicate me—I can't believe the answer is in a cheap bottle of castor oil. I dial Bill to thank him for the information and ask how he knew the castor oil would work.

Bill says, “I was at a party the other night. Some people were talking about Edgar Cayce's books, and I remembered that he talked about castor oil being an anti-inflammatory. I figured it was worth a try.”

Goose bumps travel up my arms. It's a God thing, my mind screams at me, but I push the thought away. Bill was just in the right place at the right time. My friend Neva used to say there is no such thing as coincidence, that everything happens for a reason. I can't imagine any good reason for this illness.

SOME DAYS DEATH SEEMS JUST A HEARTBEAT AWAY
and possibly preferable to the way I live. The doctors assure me that I will get better, but it may take up to four years. I'm not sure I can last. I didn't smoke the pot because the castor oil is helping my head, but it feels as if I have nothing left with which to fight back. I'm ugly, I'm fat, I'm exhausted all the time, and I'm mad at God. How could he give me the best life I'd ever had, then rip it away? I quit praying a long time ago.

It has been a long day. I've pulled out all the stops, allowing myself to relive all the pain and loss of the past, bringing me to
a deep depression. I don't want to drink, but am not sure I want to live any longer. I would call one of my AA friends, but I'm sick of their platitudes. If one more person tells me that this too shall pass, that there is a reason for everything, that I need to work my maintenance steps, I think I'll puke. What do they know? They aren't living through this.

My husband, who has a vending business on top of owning several bars, is out on a machine call. I don't know where, or if it's a pinball machine, a pool table, or a poker machine, but it doesn't matter. I'm alone in the house except for Georgie, who loves me no matter how I look or how irritable I can be. As darkness descends, I lie across the bed, but sleep won't come. I try to hang on to my dark thoughts; however, the steps, all the messages I've been given over the years, slip into my mind. I know what I've been told. I know what to do. Why can't I do it?

In an attempt to clear my mind, I step out on the upper deck and stare unseeing at the star-filled night. I wish Tom were here. God, he deserves better than this. He's been great, taking care of me, running me back and forth to doctors—keeping up with his businesses and mine. The shop is only open by appointment now. Tom goes in when there is a call and rents out costumes. How lucky I've been to have had this time with him. As soon as the thought hits, I understand what I need to do.

“Dear God,” I wail through my tears, “I am so sorry.” I have been given so much, have known real love, found a happiness I never imagined, and if I died today, I will have had more than I ever dreamed of. “Can you ever forgive me for
being such an ungrateful ass?” All I've done since I got sick is wallow in self-pity and focus on my limitations. “If you give me another chance, I'll do better. If you want to take me, I'll understand. Thank you for my life.” I fall to my knees, just as I had done that day in the doorway of the garage apartment, and say, “Please, God, help me! Help me to understand what you want me to do.”