April is National Parkinson’s Awareness month. Our second official “out- open and proud” month. We had been living in a secluded world of don’t ask, don’t tell. Making the announcement or declaration that you have Parkinson’s currently comes with as many side effects as the medicines Parkinson’s patients take on a daily basis. At the core of every tremor or rigid movement is sleeplessness of how the disease will manifest, trepidation of being shunned, fear of ignorance and terror of loosing a job. The worry is endless.
Our angst stemmed from living and working in a sports arena where the environment is much like Tiger Woods and Nike’s new ad which states, “winning takes care of everything”. We spoke soon after our diagnosis with an attorney friend in Boston who recommended Don notify his employer and as to anyone else, well, that was up to us. So we took his advice. Don told Tom. We told our parents and then asked them to respect our privacy and keep it to themselves. They honored our requests. We lived our lives. Challenges came up- as did questions. I was always amazed by our true friends- because they never asked. Not that they didn’t care- it’s just that they knew if we needed to talk about it- we would. They didn’t need whatever was happening to us to be defined.
I remember being at our first NC State bowl game. We were at a kickoff luncheon and a coaches wife, that was new to Tom’s staff, asked Don brashly- in front of boosters and alumni- what was wrong with his arm? and would it (infer he) ever be “normal”? Both Don and I witnessed her husband kick her under the table, as if to tell her to shut up but her ignorance was already on display. Don simply answered, no. We never felt the need to explain. Other times, people would inquire and we would say he had had a stroke. Who cares what it was. If you were asking, most likely, we knew you were already judging.
I’ve read many peoples personal stories of their Parkinson’s coming out party- not telling- revealing to some or just simply confirming but July 2nd, 2012 is a news day I will remember. Bill Geist, CBS Sunday reporter announced via a video message that he had been dealing with and hiding from his Parkinson’s diagnosis. “I told no one. Not even my kids.” For 10 years he and his wife lived with this secret. He says “he didn’t want to be known as the sick guy” and that for “personal reasons he was afraid he would get laid off or wouldn’t get promoted”. When he was asked whether it was a difficult decision to come out this way. His answer, was simply, “a very difficult decision”.
Someday, I hope Don will speak to how he felt about informing the people he cared for that his life would be forever different. More importantly I hope he speaks about keeping it inside for so long. We went to great lengths pretending not to have this disease. It started by just refusing to let it control us but at some point it changed into something more. We began planning recreational things around “good” times of day, avoiding certain social situations where it may be an issue, donning sunglasses when he could to disguise the blank look that many Parkinson’s suffers have, being sensitive to Dons low voice and helping him repeat himself, always sensing when it was time to go. The list goes on an on. Hiding the disease became a full-time job in itself.
- When I “came clean” to a select few, all I remember were tears. I couldn’t stop crying. I couldn’t believe I had held it in for so long and even after all the time that had transpired, I still couldn’t believe it was our reality. It was as if verbalizing the diagnosis finally made it true. As a caregiver you often see how people respond and internalize things. We often see it all and in that “all”, I realized that the fears that kept us from disclosing it were happening whether we were forthcoming or not. I can report, all of our angst and trepidation came as true as a Disney trip to the Magic Castle. It’s as if Cinderella waived her wand and voila, but it all happened, regardless of the way we chose to handle it.