The second death sentence

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When I returned to the United States from Germany after being told I would not have a long life, Cindy, a friend in Plano, Texas, and her family came to visit me in Arkansas. Since Cindy was a nurse I asked her if she would “be there for me” when my end came. She said yes. However, as things go with the act of keeping in touch, we had not.

In the next five years I divorced my husband, got my Real Estate License, worked in five different jobs, bought a home, went on Supplemental Security Income (SSI), and dealt with that death sentence hanging over my head the entire time. I had gone for a routine examination between jobs when my doctor told me I would not be able to work much longer. The next thing I know he had me on SSI. My functional breathing capacity was 13%.

The Situation.

The spring of 1992, while at work, Cindy made a comment to a scolio surgeon who was looking at x-rays of a severely curved spine. She told this doctor that her friend was a lot worse off than that person. He told Cindy to tell her friend (me) to come see him.

It had been five years since our visit, and Cindy could not find my address and did not know if I was still alive. Therefore she prayed and asked the Lord to have me contact her if I was still around. After thoughts of Cindy nagged me for several weeks, I wrote her a letter. I like to say she prayed, and I obeyed—finally.

Joan-1992When Cindy received my letter, she called. She told me about this wild-man scolio surgeon who wanted to see me. I told her I was now on SSI and Medicaid and had no insurance. Cindy was let down because neither the place she worked nor this doctor accepted Medicaid.

Cindy told the doctor she talked to me and that I had no insurance. He said he would see me for free. In fact, he talked five other doctors into helping me for free, and talked a hospital into underwriting half a million dollars for my care. This man was either serious about giving life or thrived on challenges, or maybe a mix of both.

I began to see this doctor in June of 1992. This wonderful doctor wanted to help me, and to help make his decision he sent me to several of the doctors who would be involved in my care. If anyone along the way said no, everything would stop. If all went well, the plan was to do the surgery in September.

Mayo Clinic was consulted for intense pulmonary function tests, but they would not do it for free. But because they had never run the test on anyone with such limited breathing function they were tempted, however, informed the doctor the same tests could be run right next door in Dallas.

The doctor explained to me that my breathing should not be as compromised as it was, saying I breathed like someone with a 140o curve, not a 77o curve. For this reason he wanted to make sure my heart was working properly with my lungs. A probe would be put into my heart and measure my oxygen levels at rest, then I would be exercised with the probe in place to see if my oxygen level increased. If it did not, he would not operate. The reason, he further explained, was because my breathing would not be increased by releasing my chest cavity, all he would accomplish would be to shorten my life span, which was already seen as being very, very short. And if the oxygen level did increase, he would operate.

Pulmonary function torture.

I took the test in August 1992. Although I had to endure two days of intense pulmonary function torture, the folks torturing me made it as pleasant as possible. It was a wild ride. The doctor who performed this test advised that surgery was my only hope to live.

My case was taken to a scoliosis seminar and a scoliosis convention. At the last, the doctor brought in another scolio surgeon because in order to dismantle my current fusion and put me back together again quickly, he would need help. I saw this second scolio surgeon the first part of September 1992.

And then I waited for the doctor to call me with his decision.

Sentence No. 2.

The call came on October 5, 1992. With shorthand pad and pen in hand, I captured the conversation. My Gregg Shorthand came in handy. Following is that conversation.

“There is nothing we can do to help you. Surgery will kill you.”

“And my body... what will happen to it?”

“Premature death.”

Silence—it lasts a moment, but seems forever.

“How long do I have from a medical standpoint? I want you to tell me what you would dictate into my records.”

“You could live a couple years if you don’t get sick, but a respiratory infection or problem with allergies will kill you.”

The air is charged with emotion.

“I wanted to be able to help you, Joanie.”

“I know. There are no words to carry my appreciation for what you have done to try to help me.

“You take care of yourself, Doctor...”

“I will.”

“ you can keep this from happening to people,” I finish... ending the long awaited telephone call.

My friend, Cindy, who was behind the scenes and saw and heard all, was told I had six months to two years to live at the most, IF I did not get sick. Instead of being able to help me, they placed yet another death sentence over my head. It was a hard thing for Cindy to deal with, and I have not heard from and have lost all contact with her.

Certainly these facts are difficult. However, I knew regardless of the physical facts, I would live and not die. And I voiced this fact and was deemed to be in denial. It is currently June 2006, 14 years later, and I still live on earth. Even if my time is up tomorrow, the fact is that I did live. And have in fact out-lived both death sentences. I loved it when I turned 50... hence not dying in my 40s... just because. Will I turn 60? Maybe.

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