The Run Around

LAST WEEK

"Hey Joan! Do you have a second?" I asked from her doorway.

"Sure. Come on in, Marcy. What can I do for you?" Joan always had a warm welcome for the tellers. I knew her days were hectic. It was hard to track her down, but she told us we should come to her if we needed anything. Today, I happened to catch her in her office as I was headed home.

I returned her smile. "I wanted to ask you for a reasonable accommodation. The handbook says we need to ask for one, but it doesn't say who to ask so I thought I would start with you."

Joan looked concerned. "Of course," she said and pointed to the chair across from her desk as she rose to shut the door behind me.

I sat down feeling nervous. I hated disclosing my disability to others. People typically over reacted or shied away, but the medication I had been using to minimize my episodes had not been as effective the last few months and I knew it was only a matter of time before it would interfere with work. "I have a condition known as SPS," I started. "There are several symptoms that can effect my ability to function, but as of yet, none of these have been debilitating and I have been able to manage working through them." I looked up to see Joan's expression. She was sitting quietly in her chair, listening intently to what I was saying.

"However, I have been having more frequent attacks involving the symptom that locks up my muscles. My hands and arms seem to be targeted the most, making it impossible to do very basic things including making a phone call." Joan continued to sit quietly. "I'm requesting permission that my husband calls in for me and I be released from making phone calls to fill my shift if I have an attack affecting my hands and or arms."

Joan spoke so quickly, I wasn't sure if I imagined it. "That sounds horrible! I couldn't imagine having to deal with that. It must be so frustrating for you! What does SPS stand for?"

This was the moment I dreaded most when explaining my disability. "Stiff Person Syndrome." I kept my face straight, serious, trying to convey that I was telling the truth.

Joan looked surprised. "I see. I feel for you. It must be very difficult to work through these attacks, but I can't approve your request. It wouldn't be fair to others."

I was both angry and insulted. I know how ridiculous my disability sounded, but it existed and could be debilitating. "Do other employees suffer from this as well?" I asked, hoping she understood that my situation was isolated and couldn't be compared to others.

"No, but it still wouldn't be fair. Is there anything else?" she asked.

Yes! I wanted to yell. "No" was my response as I stood to leave. I'd have to take this to the next level. It would be unfamiliar ground, but so were the new symptoms I had been facing.

ELEVEN MONTHS LATER

I'd sat for the last three days listening to my lawyer explain my case, defending myself from the multitude of questions about my character, and feeling the muscles in my hands, arms, and back tense so that I wanted to cry out in pain. I stifled the sounds, swallowing them down and digesting them when I could. The judge was expected to appear with his decision in a few minutes. I expected to be victorious, but my lawyer had warned me that things are never cut-and-dry in court. Even though there were laws on the books and cases that had set precedent in my favor, the truth was justice was still subjective.

The judge entered and the bailiff called for the court to rise and be seated. I held my breath as the judge cleared his throat and began to read aloud from the thick packet of papers in his hands. The handful of people who had come to watch the case hushed in the benches. "I have been asked to determine if discrimination has occurred and if so, to apply a penalty. The difficulty in this case is that Ms. Leyhiem, Marcy, has a disability that sounds like a joke, putting it bluntly, but is very much so real. It is a very rare disability where the set of criteria is extremely difficult to meet because the symptoms are generally mild at first and highly individualistic as they worsen. It has been satisfactorily established that Ms. Leyhiem does in fact suffer from Stiff Person Syndrome or SPS and the symptoms she claims to manifest to be the truth. With that in mind, I find the accommodation she requested to be within reason and demand that it be implemented at once."

I heard light applause come from behind me, but my neck was too stiff to turn my head and look. The judge continued, "In regards to the discrimination in employment practices surrounding her application of a job and eventual denial, I also find in favor of Ms. Leyhiem. I agree that the decision was made solely on her disability at a time it was not interfering with her ability to perform the essential job functions. However, at this point, based on Ms. Leyhiem's testimony, she is no longer able to meet the basic criteria of the position. Having her reinstated, as the law would guide m to do, does not make sense. Therefore, I am ordering her to receive lost wages from the date the position officially started until the present date. In addition, the company is mandated to complete intense training in employing and understanding the rights of people with disabilities. Training will occur at the company's expense and should be completed in the next six months. At the end of my dissension, I will include a list of reputable organizations that can provide such training."

More applause. The run-around was over. I had succeeded in my mission to protect others disabled by rare or hard to recognize diseases from being victimized as I had been. I smiled larger than I had smiled in a long, long time..... and I hoped my face would freeze that way.

*** Daily Writing Practice***

Important: This is a real disease. For more information about the devastating affects, please visit NINDS.