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[Editor's note: Republished with kind permission from the original posting in the April 2014 issue of Memo to Members, the newsletter of the Orlando-Central Florida STC chapter. For more information about Parkinson's, see our list of resources at Parkinson's Disease.]
By Mike Murray, Former 3-Year President of the Orlando Central Florida Chapter of Distinction and STC Associate Fellow
Being a 30-year member of the Orlando Central Florida Chapter of STC, I have grown to love the organization and hate missing meetings. Recently, however, I missed the better part of two years while I was dealing both physically and mentally with the onset of Parkinson's disease or PD [sic].
During my first STC chapter meeting when I finally felt well enough to rejoin life, I noticed a long-time friend and colleague looking at me. Even after my eyes met his and I mouthed "What?" he continued to look and said in a low voice, "Nothing. I'm just looking." That long, knowing, inquisitive stare, coupled with my newly developed ESP, was what it took for me to get the message. And what exactly is the message? Simply that people cannot possibly know what to do or say when there is an "elephant in the room."
The Birth of an Elephant
I was first diagnosed with PD in September of 2008. PD is a progressive disorder of the nervous system that affects your movement. It develops gradually, sometimes starting with a barely noticeable tremor in just one hand. But while a tremor may be the most well-known sign of PD, the disorder also commonly causes stiffness or slowing of movement. PD affects different people "differently." For me, it made my legs extremely weak, affected my balance, and dramatically changed my voice.
The official diagnosis was very difficult for me to handle. This certainly wasn't what I envisioned for retirement. I was looking forward to lots of travel, fishing, and my passion—sports announcing. But as PD would have it, I had to surrender my driver's license. As if that wasn't enough, I lost my announcing voice. As a fiercely independent person, I became dependent and isolated. My whole world changed overnight.
Advice for Other Elephants
Once you have a name for your illness, you should seek out a professional who specializes in it. It may take a while for your doctor to determine the mix of medications that will do you the most good. At the same time, identify a therapist. It is very important for you to talk about your malady. You have to make it real before you can accept it.
Yes, acceptance is very important. What else can you do? Going the "Why me?" route simply delays your life adjustments. Yes, you can still lead an interesting, fulfilling life. As I said to my son Aaron, "I can't believe this is happening to me." His response was, "Well it is!" His message was clear. Quit wasting time, accept it, and move on. I sure did raise some smart sons.
Counting your blessings with a sense of pleasure and wholeness is a way to be thankful. People with a strong sense of gratitude, love and appreciation don't necessarily have more than others; they aren't "luckier." They simply recognize and see more beauty in their lives. A 2003 study suggests that people who count their blessings are generally happier and healthier than people who don't. If you ever feel as if anything in your life isn't "enough," try practicing an attitude of thankfulness. You might realize how good you have it after all.
How to Deal with Elephants in the Room
Treat people with disabilities as you would anyone else:
- Welcome them if they are new in your class or workplace.
- Never stare at them or act condescending or patronizing.
- Don't focus on the disability.
- It is important that you treat them as equals, talk to them as you would to anyone else, and act as you would normally act if a new person entered into your life.
Don't be afraid of asking what disability people are dealing with if you feel this might help you make a situation easier for them (like asking a person with a mobility restriction if he or she would prefer to take the elevator with you instead of the stairs if you see that walking poses a challenge). Chances are, people with disabilities have been asked that question a million times, and they know how to explain their disability in a few sentences. If the disability resulted from an accident or if the information is too personal, they will most likely answer that they prefer not to discuss it.
How to Deal with THIS Elephant
Returning to the long-time friend and colleague who was just looking at me, rather than put him on the spot, I answered him in the form of an open letter to all my dear friends in the STC chapter. Here's what I said:
It's time we have a heart-to-heart talk about my Parkinson's disease (PD). At our last chapter meeting, I realized that my failure to do this a long time ago has placed you in an awkward position: how do you deal with "the elephant in the room"?
So here it is, straight from the elephant's mouth.
It has taken me a very long time to accept Parkinson's disease (PD), retirement, aging, leaving behind "Da Voice," surrendering my driver's license, etc. The way things came down on me at nearly the exact same time made things extra tough. I was unable to ease gracefully into retirement, but I am doing much better. IT IS OKAY to make kind comments, ask specific questions, etc. There is no need to avoid the subject. I no longer wish to be "the elephant in the room."
Google will tell you everything you ever thought you wanted to know about PD. For each person, the symptoms vary; for example, I do not have the tremors (thank goodness). The symptoms I do have come and go unexpectedly and vary in intensity. Here is what you can expect:
- Stiff muscles (rigidity) and aching muscles. Rigidity can also affect the muscles of my legs, face, neck, or other parts of the body and may cause muscles to feel tired and achy.
- Slow, limited movement (bradykinesia), especially when I try to move from a resting position. For instance, it may be difficult to get out of a chair.
- Weakness of face and throat muscles. Talking and swallowing may become more difficult. Speech becomes softer and monotonous. Loss of movement in the muscles in my face can cause a fixed, vacant facial expression, often called the "Parkinson's mask." By the way, it is perfectly okay to ask me to repeat myself.
- Difficulty with walking and balance. Sometimes, I might take small steps and shuffle with my feet close together, bend forward slightly at the waist (stooped posture), and have trouble turning around. I'm trying to remember not to walk that way.
- Cramps in the muscles and joints.
- Freezing, a sudden, brief inability to move. It most often affects walking.
- Fatigue and/or sleepiness may come on very quickly without warning.
- When anxiety is high, I'm behind on sleep, etc., I can sometimes get a little emotional. If it happens, just keep smiling and talking. I'll snap out of it. Emotional and physical stress tends to make the symptoms more noticeable. Sleep, complete relaxation, and intentional movement or action usually reduce or stop most of the symptoms.
To summarize, I am aware that I look weird, act weird, and talk weird. It's like living in a building and watching it fall apart around me. Well, I'm still in here! Please know that in my brain, I am still a wild and crazy guy! It's fine to talk to me as you always have, and don't give a second thought to anything else.
Does that help? If not, ask me anything you like. I love each and every one of you.
How to Create an Elephant
Simply ignoring people with disabilities because you think they may not want to discuss it may make them feel inadequate. They may think you don't want to deal with them as fellow human beings or that you are trying to avoid being asked for help.
It all boils down to this:
- If your disability makes you think of yourself as the elephant in the room, you will be that elephant.
- If you treat someone with a disability like the elephant in the room, he or she will become that elephant.
The simple answer is to just treat everyone as a person, disabilities or abilities aside.
There are no elephants in the room; we create them.
(Author's Note: Special thanks to Dan Voss, one of my very best friends and the best darn editor in the entire universe!)