Voiceless

By Dottie L. Heffron

It was late in the evening, but that didn’t keep those with Lyme disease from calling the Illinois Lyme Disease Network. The voice sounded fragile as I listened to the message the next day. “Please, p…..l….e….a….s….e, if anyone human is there on the other end of this line, please answer the phone. Please answer me.”

This is how I met Robert.

Robert Jurich’s story starts many years ago with his beloved cat, Angelpuss. The feline died in his arms and sent Robert into a deep depression. Little did he know, but this would be his first step into the land of Parkinsonism and Lyme. A land riddled with shameful corruption, squared holed medicine for round people, and mistreatment from a community he was taught from childhood to respect.


photo ©Spencer Heffron

Robert was born in the spring of 1935 and raised by his grandmother in Murphysboro, Illinois. During his teen years, he developed kidney stones. During this time, testing was inadequate and the only place for you was a facility.” In other words, you were shipped off to a psychiatric hospital. So it was with Robert. His aunt ushered him into the mental ward and on her way out, she convinced Robert’s grandmother to sign her home over. There would be no place for Robert to return to once his medical condition was resolved.

A volunteer at the psychiatric hospital realized how bright Robert was and she took special interest in him. She suggested that Robert attend medical college. Robert says he did attend Southern Illinois University’s medical school for three years. However, he had great concerns with their politics and felt they were more concerned with diplomas than educations. Robert turned to botanicals and found comfort managing a floral shop. The move to Carbondale, Illinois found him changing his job from shop manager to an employee at a tape manufacturing plant. He saved up enough money to buy the home he still lives in today, where he grows his own garden of everything from bamboo to orchids.

After moving to Carbondale, Robert befriended Angelpuss. He and the feline were family, the only family Robert had left in the world. It would have been unbearably lonely without Angelpuss and so it was. Robert ad Angelpuss, keeping each other company for many years. The end of this friendship came as Angelpuss lay dying in Robert’s arms. As she breathed her last breath, Robert felt the grief envelope him. They would soon find him in a physician’s office seeking help for his depression.

The doctor seemed indifferent as Robert explained the situation. Why not? After all, it was just a cat. Robert was handed a prescription for Meleril and sent on his way. At first, the medication seemed to help. But after several months on Meleril, Robert began to experience side effects. His hands had begun to shake and there was ringing in his ears. Robert explained the new symptoms to the physician, but he ordered that Robert continue the drug therapy. When Robert noticed that he was having difficulty concentrating, he confronted the doctor again. Robert explained that “the governmental approved drugs” were causing him harm. The doctor responded, “Prove it!”

Robert had developed Tinnitus and the neurological disease, Parkinsonism.

Meleril (Thloridazine) was first introduced in 1959 and is used for the management of schizophrenic in patients who have not responded to other antipsychotic drugs. Meleril is said to cause the patient to be more compliant, confused – a chemical restraint, if you will. Robert was never diagnosed with schizophrenia ad no other drugs were offered before Meleril. While there is no lab test for schizophrenia, there are classic symptoms (e.g. hallucinations, delusions, racing thoughts). Robert had none of the classic symptoms. According to “schizophrenia.com”, a negative result for this disease would be lack of emotion, apathy, difficulty concentrating, etc. Could the physician, who was not a psychiatrist, have misdiagnosed Robert: Robert complained of feeling depressed because his cat had died? He never claimed to see the cat after burial, report any delusions, or express racing thought. Could the physician have assumed that since Robert had a history of being in a psychiatric hospital (kidney stones) the complaint he was now being presented with was psychiatric?

In 2004, Robert began to feel fatigued and his body ached. He chalked these aches and pains up to growing older. A pastor at a local church recognized these symptoms as those of Borrelia. He should know the symptoms well because the disease had ravaged the parish and his own family. It would be two years before Robert would see a doctor to be tested for Lyme disease.

As Robert was being treated for Borrelia, he developed a bulls-eye rash (Erythema Migrans). The pain Robert experienced began in his hand and moved up to his shoulder and into his head. Now it was believed that he was co-infected with Bartonella (cat scratch fever), which he may have acquired from the bite of a cat.

Robert does not understand why he is so sick. The medication should be fixing the medical problems. Instead, he travels again and again to the emergency room, only to be told there is nothing wrong with him. The ER doctors order the ELISA tests, but they return with negative findings. Another lab reports a positive finding. Robert remains in the middles – chronic Lyme versus no chronic Lyme. When Robert returns to the hospital to have his test results explained, he becomes agitated – their test states negative results, while another test reports he is positive for Lyme disease. He is ultimately banned from returning to the hospital.

Not only is Robert caught in that in-between state in the medical community, he experiences less than glowing treatment from the community of Carbondale, Illinois. From the police department to the local library, they seem to see Robert as a bother.

 Photo©Spencer Heffron2009

Robert joins others who have slipped thought the cracks. These gentle souls, who are ill with a disease that seemingly no one wants to treat, are labeled and forgotten. Robert’s only desire has been to receive the correct medical treatment and live out his days with his flowers. Instead, he has endured a multitude of mistreatment, neglect and ridicule.

Today, Robert’s story is told. He is now heard. Will it change his medical situation? One can only hope. For in the end, that’s all any of us have – HOPE.

©dlheffron2009

~*~

Published in Peer Observations™ 

Dottie L. Heffron is founder of the Illinois Lyme Disease Network. She is the mother of three, a full time employee, owns a computer shop, has earned several degrees and certificates, with a specialty in security, and suffers from Lyme disease. She field calls, hands out flyers, and sets up Lyme disease information tables and various events. She is also responsible for the state’s Lyme disease Proclamation, making Lyme disease recognized by the Illinois state governor, signed for the past two years.
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