Labeled Disabled Part One: Working with Acromegaly

At the age of 28, Suzy remembers medical students feeling her puffy hands and feet. Her feet were so expanded she had to wear wide shoe sizes. Her fingers were so puffy from extra fat tissue that she couldn’t find a ring in any store to fit. The neurosurgeon and neuroendocrinologists at the Massachusetts General Hospital in Boston, MA diagnosed Suzy with a benign pituitary tumor.

Suzy also had symptoms of fatigue, headaches, bulging eyes, excess sweat, and facial and body hair growth. These resulted in a diagnosis of the disorder acromegaly. An operation called transspheniodal surgery was performed to get rid of some of the tumor on Suzy’s pituitary gland, which a biopsy reported was benign. They hoped that the high level of growth hormone causing the excess fat tissue and sweating in her body could be regulated with the absence of the benign tumor.

The surgery occurred in December 1981, and was repeated in May 1982, as not all of tumor was removed. Even after the second surgery it wasn’t all gone.

Part of Suzy’s tumor was near her optic nerve and another major blood vessel. Therefore, another procedure using the Braggs Peak Proton Beam radiation therapy was used to try to get the rest of the tumor. After the two transspheniodal surgeries, the proton radiation removed most of Suzy’s left pituitary. This led to a total tumor necropsy.

Because of this, her hormone function has to be regulated by medication. Prednisone keeps Suzy alive.

At age 39, Suzy was in a coma from spinal meningitis for ten days. She contracted slight hearing loss in her right ear and residual short-term memory loss. Her sense of smell and sound became more sensitive. Suzy also experienced a spinal fluid leak that could be traced back to her transspheniodal surgery 12 years prior. Typically, if a leak happens from transspheniodal surgery it occurs six months to two years out.

A year later in 1995 another spinal meningitis attack put Suzy in another ten-day coma. This resulted in total loss of muscle strength. Suzy has been able to regain her strength back, but not without severe stamina issues.

During this time, Suzy was fired from her long-term job as editor of an international horse breed journal. She’s also had to cut back on all the traveling done as a horse photographer.

Suzy writes to me, “Even being on a minimal replacement dose of prednisone since 1984, it has caused major issues with my body. Having lost 30 pounds in 2017, we were hoping to reduce the daily dosage, but having so much joint pain, it’s very hard to even try to reduce the dose. I really struggle to stay positive and happy and productive. I love the work that I do get to do, so that helps. One of my jobs involves managing a Facebook page for a horse training facility, so that keeps me in touch with many. I try to just take one day at a time, and one issue at a time, and keep putting one foot in front of the other.”

When an adult calls in sick from work, the expectation is that they will shortly be returning to their duties. A healthy person is expected to have momentary lapses of sick days and is allotted time to recover. An adult who is continuously too sick to adhere to regular work hours will no longer have a steady job.

To qualify for supplemental security income, disability in an adult body is defined by the government as a person who lives with a medically determinable physical disability or mental impairment which results in the inability to do any substantial gainful activity (work performed for gain or profit), and can be expected to result in death or last for a continuous period of not less than twelve months.

The constructs of well and sick take on a dichotomy in American society. Disabled is a label for those souls who live in bodies unable to perform the common activities of their peer group’s. A person would label an adult unable to hold a full-time job as disabled in one way or another. Usefulness in society is determined by how much a body is paid for the work they do in a day.

To be continued in two more parts.

About the Author: Rebekah Palmer is the author of two books published by Aneko Press: A Letter to my Friend and A Letter to Myself. They are both available on Amazon as well. She also has poetry included in the anthology Strength: Lives Touched By Cystinosis. Please visit her author profile on Goodreads and her author page on Facebook called Jairus Daughter to ask any questions or to reach out.

To learn more about acromegaly, click here.

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