Journey to the Edge of Texas Chapters 19 and 20

Support

TO   NAVIGATE   THROUGH   THE   STORM that churned my waters, I have acquired an umbrella of professional and lay support reaching beyond the usual confines of what is called a support group, a gathering of people to discuss their illness.
To use the generic, the broader group includes doctors, accountants, lawyers, parents, relatives, and friends — and a support group.
When I was sinking at the office, Bob Cooper, a certified public accountant, threw the first lifeline. He had through a breakfast meeting of professionals become aware of a small law firm that fought for workers' rights, and he gave me a clipping on that firm.
I sought counsel and they, Coane and Associates, took my case. Early on Bruce Coane, the chief, described himself as a workaholic, but our course proved him above all else patient. At least six manic episodes requiring hospitalization — in a period of four years — intervened between his accepting the case and our going to trial. More than once the court set a trial date, and I got sick and couldn't appear. Finally, the judge said to make a tape for my appearance, if my mania coincided with the trial date again.

THE LEGAL EFFORT PRODUCED a positive side effect. Asked to participate in the preparation of my case, I regained self-esteem and felt I belonged in society. My lawyers always accepted my calls and welcomed me to their offices, where I was invited to sit on dispositions of witnesses. Come each Christmas, Coane boosted spirits further with an office party featuring live music. We finally went to trial and as has been told, lost. But I needed lawyers on other occasions. First, I applied for Social Security Disability. No doubt my filling out the paper work at the Social Security office while manic helped. And with Coane's effort I was approved on the initial request, an unusual happening.
My luck got worse, but legally not bad. I was run over on the sidewalk. The driver hit a large crack in the concrete near my home and whacked me from behind, throwing me on the hood. I was out for several hours and in therapy for a shattered pelvis for weeks. The driver's insurance paid a minimum, but the city balked on its responsibility.
Meanwhile, I had another manic episode, and in the midst of litigation, I changed lawyers, from the Coane firm to Steve Petrou, the lawyer who led my discrimination case in court, but who was now independent. My action cannot be explained with any complaint against Coane. They would not accept my phone calls while I was at Rusk, which is reasonable, and that may have precipitated my abandoning ship.
Petrou took the city on, and in mediation won a settlement.
And later, when my mother became terminally ill with cancer, he was called upon again to draw up a will that established a trust for me. It was feared that if the money went directly to me, I could lose it all in a manic spending spree.
Judy Nickles, a paternal cousin five years my junior and a special education teacher who was widowed in a plane crash, was asked to act as trustee and accepted, although the position paid nothing and she was going against the advice of her lawyer. A third lawyer had a hand in the will. Being in my mother's hometown, Alan McNeill would handle the probate, and when he took a look at the will, he recommended a codicil to clarify a passage.
We also bobbled with professionals with the taxes of the trust. A nationwide accounting firm figured our taxes the first year. By the second year, Cooper, my CPA, took another look and said because distribution of interest income was made to me, I, not the trust, should pay the taxes. Since the trust had a higher tax rate than me, amended returns would mean a refund of several hundred dollars.
Beyond the professional support, my parents all along buoyed my finances, seeing to it that I did not fall below my basic standard of living.
A staunch supporter from the beginning of my employment troubles was Kay York, the founder of the Depressive, Manic Depressive Association in Houston. She encouraged me in the lawsuit, and I learned many practical things about my illness in the support group— things doctors don't have time to tell you in twenty- or thirty-minute appointments with them. It probably was where I acquired the courage to talk openly about my health, where I learned how the words of circumstance sounded.
These people and others in this book have effaced stigma, have emboldened me.

Chapter 20

Risperdal

NO  RESTRAINT, I'm rising out of the chasm.
On Risperdal.
Huffin' and puffin' from the roundhouse.
Let's celebrate.
It is the longest period without a psychotic episode in the twenty-five year history of my manic depressive illness.
For five years, since getting on this extraordinary drug at Rusk State Hospital in March 1997, I have been free of demons and am now removing the monkey from my back in society and the workplace.
The world may come crashing down yet, as it did in 1988 when this ugly force evicted me from the office and a wonderful friend from my home, but my doctor and I are shoveling coal to the engine until it does.

THIS D O C T O R is Dr. Ranjit Chacko at Baylor College of Medicine in Houston. And he is fending off the detractors as soon as I present them. For a brief spell I saw a county doctor in order to obtain this expensive medicine without cost. But she cut my dosage by 25 percent, and I rushed back to Chacko. He said her action was "playing with fire."
"It's working," he said, looking up from his desk, on a recent visit.
Later, my neurologist noted that my right hand was shaking at rest, a Parkinson's motion. He wanted me to drop the Risperdal at once, saying it was the contributor. I reported to Chacko, who explained that it was a minimal Parkinson's effect and that the drug to replace mine had not been tested on manic depressive patients.
"I won't do it, I won't do it," he said when asked if I should change.
He has seen my manic behavior where others who try to manipulate the drugs have not. He knows how serious and deep my psychosis can be. I think I can speak for him, too, and say how grateful we are
for something that works. The others just don't know.
But Chacko didn't start us down the road to giddiness over our success, though it is to his credit to have maintained drug and dosage since not long after I began taking it at Rusk. A doctor there, whose name should be chiseled on a building or something—yet remains anonymous—prescribed it about midway through my hospitalization for one of my worst episodes.
I had walked the streets for a month, writing nineteen bad checks, including one for a tomato. In my final act this time, I had thrown a drink from a glass into the face of someone who I thought was attacking me at the Four Seasons Hotel. I was thrown down and restrained until police came and took me to Ben Taub Hospital.
I asked for transfer to Rusk. Its old buildings remind me of a college campus. To some its program may sound like pampering, a little soft—but we aren't criminals. And some who live at or near street level may need a massage. The older woman who picked up butts was memorable. She was so smooth on the dance floor. (There were two dances weekly at the recreation building my first go-round.)
I'm getting away from the doctor whose meritorious service has ignited my flight to old strengths. However, it's the whole setting that provides good treatment, so let me continue a tad in this vein. I've been to Rusk twice, and it had more classroom work the last time. First time, we had horticulture classes down at the park where the magnolias and fig trees grow. At the fishing lodge, the supervisor served up peach cobbler. Just a small lake, but pleasant.
Oh, I got aggressive once in the cafeteria. I couldn't get a fork to eat the messy soft taco that they served as finger food. Disgusted, I dumped the attendant's loaded tray at his feet. For this, I was hauled before one of the doctors to explain, and he ordered me a bologna sandwich "without a fork," the attendant explained.
One makes some friends during a five-week stay. There was a woman who had an extensive hangup about espionage—certain countries she couldn't visit, all that. Still, the company at smoke breaks was good.
Surprisingly, I talked to the doctor trimming my toenails longer than I did the psychiatrist. Yet, the latter came up with this miracle. It was something to sip coffee over at the cantina, decorated at holidays.
Meanwhile, the big rub with Risperdal is money. After a disagreement with the county, Janssen, the manufacturer, supplied my needs because my income was under $15,000 a year. With the distribution of interest income from a trust set up in my mother's will, I no longer qualified. But the income is still small, and if my drug bill continues at $5,400 annually in the United States, that's $108,000 over the next twenty years. That will erode substantially the principal in the trust.