I sat in an uncomfortable flower-print chair in my neurologist’s office. The nurses at the front desk were talking to each other about what type of sandwiches they would order for lunch. The background was filled with traces of annoying soft-rock music and an overpowering smell of stale coffee. My name was called. As I sat in front of the doctor, the words “you have Parkinson’s disease” fell from her mouth. I felt nauseous as her words began to mesh together. My vision blurred with hot tears and I began to cry.
I have been asked to describe what it was like to be diagnosed with Parkinson’s disease at such a young age. I have given this question much thought. There are not many situations that compare to the experience of hearing you have a degenerative neurological disorder. As you can see, I can easily describe that moment in great detail, but to actually feel it… much more difficult.
It would have to be a surreal, scary, all-consuming, life-flash-before-your-eyes kind of thing. Maybe it’s like being abducted by aliens, who plan to populate a new world in another galaxy? Hmmmm… nah! Or how about finding out that you are the next tooth fairy, but part of the gig means you will be forbidden to eat sugar ever again? Not even a Skittle. Whoa! I shudder at the thought. Then it came to me. Being diagnosed with Parkinson’s disease feels like being mauled by a bear. There you are, just minding your own business, walking through the forest when you bump into Smokey the Bear and her cubs. Yes, I understand that Smokey was a dude bear, but it’s my story, so follow along.
Now, the bear is mad that you have interrupted her duties nurturing her young and putting out fires, so she’s going to rip your head off. The way we handle this situation is similar to the coping methods used after receiving a Parkinson’s diagnosis.
When being mauled by a bear, one should always remember:
1. Remain calm and don’t run: Your first instinct after recognizing that you are going to be attacked might be to run. This is a common reaction when someone is afraid for his or her life. Many questions can fill your head, such as, “Why me? How could this happen? Am I going to end up in a wheelchair? How will this impact my family and friends?” Much of this fear comes from recognizing the utter loss of control.
2. Know your bear: Knowledge is power. The more you know about your bear, such as what type it is and how it behaves, the better chance you have of making an educated decision on how to handle it. This can include online resources, books and other printed literature, professionals in the field, organizations that provide support, and others who have also been mauled by a bear.
What happens if Smokey is just being a damn diva bear and is planning to attack you regardless of your sweet talk and extensive knowledge of its kind?
3. Stand tall, even if the bear charges: If you can’t get out of the path of the pissed-off bear and it’s clear that she is going to rip your head off, stand tall. Even if you’re terrified, don’t let this bear intimidate you.
4. Make eye contact and firmly yell, “Get out of here, bear…. You’re not mauling me today”: While remaining calm and in control , verbalize that you are not going to be bullied by Smokey. She is not going to hurt you and will not destroy your life. You are a strong, capable person and able to tackle any obstacle in your path.
5. Act aggressively: Stomp your feet and take a step or two towards the bear. Threaten the bear with whatever you have available (stick, pole, rocks…. a small pet).
What if the worst-case scenario has happened…the bear has begun the mauling process?
6. Fight for your life: So, you are being mauled and this is the end of life as you know it. But you won’t go easy! Punch, scratch, eye-gouge, head-butt, roundhouse kick, tackle or choke the bear. Focus on its nose, eyes and other sensitive areas. Do everything in your power to defeat this evil in front of you. Except Smokey’s cubs… they are pretty adorable, even if they grow into killing machines.
*Bear in mind: Smokey the diva bear is actually a metaphor for Parkinson’s disease and getting mauled is receiving the painful diagnosis. Do not use this list if attacked by a real bear. You will get your head ripped off, or at least have to change your pants.