The winter weather matched my mood-bleak and dismal. I watched the freezing rain drizzle from the gray leaden sky outside my bedroom window. My life, as I had known it, had been ripped apart. I had been raised to believe the good Lord never gave us more than we could handle. I questioned my faith. Where was God? Why didn't He answer my prayers? I held the bottle of narcotic pain pills in my shaking hand, thinking how easy it would be to end it all. But the thought of not being with my husband and not seeing my children grow up held me back.

Six months earlier, when I'd bent over the pool table to stroke in the eight ball, a shooting pain rushed down my lower back and right leg. A hush fell over the crowd. The butterflies in the pit of my stomach turned to bat wings. The score was tied ten to ten. This was game point. If I made it, we'd be in the finals of the Billiard Congress of America Women's National Eight Ball Championship. I had trouble standing up, but the place went wild when the eight ball dropped.

Suddenly and without warning everything changed for me. I watched the rain make tracks across the window pane. Joy had left me. My team had started playing for another season without me. They were going to defend the title I helped win. All I had left were memories. I stared at the phone. It didn't ring. Most of my friends had moved on. Like the rain, a tear tracked its way down my cheek.

The pain started as a low back ache. I thought I'd pulled a muscle. When it didn't get any better I went to see my family doctor. After many tests, he told me he couldn't find what caused my constant pain and sent me to several specialists.

Time passed and within a few months I could barely walk without assistance. I was alone with my pain. Life went on around me as my friends and family moved on with their daily business. Each day I could physically feel and see myself deteriorating as I sat and faced my own mortality. This wasn't living. This was existing.

Before I took a step that would be irreversible, I put the bottle of narcotic pain pills down and picked up my personal journal and started writing. Writing was the only thing I could do to help save what was left of my sanity.

Journal Entry, November 18, 1995

At forty-five I feel old and frightened...used up. Understanding why this has happened to me is beyond my grasp. I'm living in a state of shock. I've always been a healthy, active person, and now I'm on my way to becoming totally disabled. The doctors don't know what's wrong with me. One had the nerve to tell me it was all in my head. It's not true, it's in my back, hips and legs, everywhere, but my head.

Each day is a struggle and it's harder to get around in my home. I ask myself, why is this happening to me? There are no answers. I don't want to live...not like this. My mind still works, but my body is giving up on me. With each new day the pain becomes more unbearable. I can't work or take care of my home. I feel as if I'm of no use to anyone.

Being a Christian and loving my family, I know suicide isn't the answer, but when the pain intensifies, I think about ending my life...now with dignity...before it's too late. I hurt badly and I'm fearful of what the future holds for me. God, please give me the strength to endure this pain.

The days dragged after my husband went to work and children left for school. Alone, I sat in my darkened living room with the drapes closed. After taking my narcotics, the only place I felt comfortable was in my recliner. I shouldn't say comfortable. . .nothing was comfortable-but at least there, the pain was bearable.

My nights consisted of tossing and turning. Muscle spasms and unrelenting pain kept me awake. What was happening to my mind and body was beyond reason. I yearned for my old life back.

Each day I sank deeper into depression. My family tried to pull me back, but I stayed out of their reach. Angry at the world for what had happened to me, I took it out on the people close to me, the people I loved. Even in my drugged haze, I knew my family loved me, but for reasons I couldn't understand, I lashed out at them. The anger ate away at my soul.

I hated what my life had become. I hated my helplessness. And I detested the narcotics, but needed to take them to get through each day. Trapped in my pain-racked body there was no way out. Not being able to work or take care of my family, I felt useless. One day merged with the next as my insides shook from the drugs. I wanted to put a stop to the madness.

Through my fogged brain I heard the phone ring. The answering machine picked up. I listened to Dr. Higgins say, "Jude, are you there?"

He knew I was home. Where else would I...could I go? I didn't go anywhere except to his office. I answered, "Hello, it's me."

"Jude, I have some news. I received the results back from the neurologist. I want you to come into the office so we can discuss your treatment."

"What is it? What's wrong with me?" It wasn't just in my head. They had found something.

"Hold on, we'll talk about everything when you get here. Can your husband bring you in this afternoon at about one?"

"Yes. I'll be there." Finally, they knew what caused my pain. Had God sent me a message? Maybe he hadn't forsaken me after all. This was a step toward recovery.

Later in the day Dr. Higgins dashed my glimmering hopes when he told me I had an incurable progressive disease of the spinal cord called Arachnoiditis. He said it was clumping of the nerve roots, which caused muscle spasms and persistent pain. There is no cure. The pain would be constant for the rest of my life with a symptom of my disease called Chronic Pain Syndrome. I was told I would probably be in a wheelchair in the near future. Numbed by this information, I let him make an appointment for me at a pain management center.

While waiting to hear if my health insurance would cover me, life went on and somehow I got wrapped back up into the flow. Perhaps, not a major part, but at least glad I was still with the living. Was this a quiet call for peace coming from my soul? I was lost, but knew I wanted to live.

Journal Entry, December 14, 1995

I sit in my recliner in the living room writing in my journal. Dr. Higgins must be wrong. I can't believe there's no cure. Of course, they can cure it. It isn't cancer. Surely they have a magic pill that will make it all go away.

Today he faxed my medical records and his prescription for treatment to my insurance company. I pray a lot while I wait to hear if they'll take care of my expenses to go into the pain management program. I'm afraid of what will happen to me if they turn me down. I can't afford to attend the program without their financial help. Unfortunately, working with insurance companies can be quite difficult. They are great until you need them...then all kinds of hell breaks loose.

With my medical condition being so rare, the insurance company has to call a special committee meeting to discuss my medical records in order to decide if I'll have coverage. They'll let me know in a few weeks. Does anyone care that the pain increases on a daily basis while I wait for strangers to decide my fate? Waiting is frustrating and infuriating. I'm less important than their bottom line. Their attitude dehumanizes me.

My inability to work is causing a strain on my family. I used to work as a freelance make-up artist, doing hair, make-up, wardrobe, and special effects for movies and commercials, making good money. Without being able to pull my share of the load, things aren't getting any easier. Losing my financial independence is a scary thing.

When Dr. Higgins diagnosed me with Arachnoiditis, he told me I would qualify for Social Security disability benefits. At the time I didn't want to bother with it. I had always worked and earned an income, and I was too proud to ask for money from anyone. Now, any money coming in would help. So much for pride.

I went to the Social Security office with high hopes. Being one hundred percent disabled, with a noncurable progressive disease such as Arachnoiditis, I shouldn't have any problem qualifying for a total medical disability. They'd requested my medical records, and then, I couldn't believe it! But I was turned down. I went back to see Dr. Higgins. He told me not to worry, to keep trying, that sometimes it takes patients three or four times before they get their benefits.

However he did recommend an attorney to take care of my case. Eventually, I would go before a judge. In time, I would get disability benefits. I'd been paying in money for many years and it didn't seem fair that the Social Security Department made it this hard to get benefits. We have health insurance, thank goodness, but everything costs so much! I continue to fight the system, but I can't help wonder if my health insurance company would pay for my one chance to live a reasonably normal life by letting me go into the pain management program.

Journal Entry, January 29, 1996

The holidays passed in a drugged blur. It's been ages since I've gone out, except to see doctors. The pain isn't going to go away. The disease exists inside my body. I'll never be the person I was. Things have changed for me and I have to face it.

I'm angry at the world for what has happened to me; at being afflicted with a disease few people have ever heard of; at having what are supposed to be the best years of my life turn into the worst; at the Social Security Administration for withholding my own money and the insurance company for treating my life so casually. And I'm angry with my family for not understanding. Rationally, I know no one can understand without experiencing chronic pain for himself, but I'm so alone. In my heart, I know I have to be strong for myself, or I'll be lost. Fear of what the future holds in store for me is very real. Can anyone help me? God knows I don't know how to help myself. They're all going on with their lives and I'm stuck in the seventh level of hell.

People I thought were my friends don't have time for me. They have fallen by the wayside and this causes another kind of pain. I quickly discover who my real friends are. They are sticking it out with me by keeping in touch. Unknown to them, these people and my family are my lifeline.

My family tried to show their love and support by caring for me even though it was hard to deal with my moodiness and pain. I knew that, yet I also knew they were going on and I couldn't help but resent them. It didn't matter that it was neither by their choice or mine. Every day reminded me they could and would function without me. Families do it every day, because they have to. Anger, frustration and helplessness ruled my life.

The narcotics kept me on an emotional roller coaster. Not taking the drugs wasn't the answer. Without them I couldn't stand the pain. I was caught in a dark, scary place. I didn't want to live being dependent on drugs and other people. And I didn't want to be mean and hateful to my family. I wanted my life back! The doctors told me I would never know what caused me to get Arachnoiditis and CPS, but it was all I could think about. I was becoming overwhelmed by both imagination and reality.

Still, it didn't do me any good to dwell on the negative. Somehow I had to find a way to regain control of my life. I would lose everything and everyone I cared for if I didn't find a way to help myself. Would the insurance people ever get back to me? It was time to hassle them, yet again. This...I could do.

Unlucky enough to have this disease that destroys people, but lucky enough to still be here, I was eventually approved to go to the pain clinic for testing. The doctors would tell me if I could be helped. To my surprise, they really understood about pain. What a huge relief. For the first time since I became ill I wasn't alone with my anguish. Other CPS patients that had the same sort of problems as me, were there being tested. And like me, they were grumpy and hurting. Not that I'd wish this on anyone, but somehow, just knowing others were feeling what I was experiencing gave me comfort.

By the end of the testing, I was told that with hard work, determination and making lifestyle changes I would be able to control my chronic pain, instead of it controlling me. It was a day of tears, but finally, I had some positive news to hold on too. That day a little corner of my very dark world brightened. I now had HOPE!