A funny thing happened to me on the way to self-pity
by Mark Milow
With the diagnosis of Parkinson's disease there are a lot of things to consider. And that’s further complicated to some extent by a diagnosis of Young Onset Parkinson's Disease (YOPD). Young Onset Parkinson's Disease means somebody has the onset of PD by the age of 50 or younger. And when you’re in that age range, you are usually still working or raising small kids, or helping a child through college, etc. So adding the diagnosis of a degenerative neurological condition into the life of somebody that’s working fulltime and possibly very involved with an active lifestyle can really complicate things. Many people know that Parkinson’s Disease comes with tremors along with stiffness, balance issues or rigidity. But many people don’t realize the general fatigue and exhaustion that comes with PD. Or the seemingly myriad other non-movement symptoms that accompany PD like panic attacks, depression, sleep issues, constipation, pain, memory or cognitive issues, low blood pressure and even sweat control! And that is exactly where I was in February 2021…living a busy life and smacked square in the face with a diagnosis of YOPD.
At receiving a life changing diagnosis like this, I had a choice. How was I going to respond? Former football coach Lou Holtz once said, “Life is ten percent what happens to you and ninety percent how you respond to it.” I like that saying. It is short, meaningful, and very inspirational. So how did I respond to my diagnosis? Well, I have to admit, my first response was not very inspirational. I asked a lot of questions like, “Why me?” or “Am I the only one other than Michael J. Fox that has Parkinson’s before the age of 50?” I felt alone. I felt scared. I felt lost. I had so many questions, and so little answers. And with all those emotions, I began to feel sorry for myself.
But a funny thing happened around that same time that the self-pity was setting in. I began to see examples of bravery in the face of adversity. Here in Phoenix, the annual 4.2 mile run to honor Pat Tillman was about to take place. Pat Tillman, as you might recall, left a very lucrative career in professional football after the attacks on the US on September 11th, and enlisted in the military to serve his country. He would later die in combat in his service to our country. I also had a friend of mine tell me of someone he knew who was courageously battling a brain tumor with grace and peace, due to her strong faith in God. And maybe most impactful to me, one of my best friends has stage 4 cancer and was given 1 year to live. Over 4 years later, he is still going strong despite a rough treatment schedule. Anytime I tried to pull out the “Self-pity card” with him, perspective was restored immediately. And this friend is a man of faith…faith strong enough to carry him through years of difficult cancer treatments and hard times. That faith inspires me to this day.
I also began to realize that it was OK to laugh and find humor in the situation. But I will add a disclaimer here. Not everyone agrees with humor about health issues, and you have to be careful of your audience and who is listening. But for me personally, finding humor in difficult situations has always helped me in the past. So why shouldn’t it help with such a serious diagnosis? And I am not alone in this. Some of the funniest people I have met have been people with Parkinson’s (or other chronic illnesses) that use humor as a coping mechanism and to help them keep perspective. It’s OK to laugh. Even in difficult circumstances. And finding something to laugh about can certainly help to fend off self-pity.
I think the biggest thing that has helped me keep perspective though is people. Having people around me that understand and care. And to find those that truly understand, we really need to search in the pool those impacted directly by PD. For me personally, one of the greatest things I did was to create accounts on social media. Shortly after being diagnosed I created accounts on Instagram and TikTok, specifically to talk about what I was going through. I started off by simply talking into the camera about what I was experiencing. I didn’t know if anyone would see what I was posting, and I really didn’t care. This was therapy for me to talk through the situation. But as I went along, people began to comment. I got questions from viewers. People responded with resources that could help, or anecdotes from their own story. Very soon, friendships were made and bonds were formed. People I had never met in person became some of my best friends. Friends that could understand and identify with what I was living with every day, even more than my closest family and friends that were physically close to me but didn’t understand the challenges of Parkinson’s. And that network of people I still count on today for understanding, for ideas, for accountability, for encouragement. People make all the difference. People that are invested in me, transparent with me, open to hearing me- even when what I have to say is not “pretty”. Because the plain truth is that difficult times will come. Depression, anxiety and apathy are extremely common in people with PD. And the funny thing is, it can happen all at once! Which sounds odd when you think of it. If you are apathetic, how can you be depressed at the same time? But it happens to all of us! A very good friend of mine once said to me in a moment of raw candor, “"Apathy and anxiety, those 2 love to play together! Let's set up a play date with those 2 bitches! I mean come on! Give me one or the other! Not both at the same time!" When she said this, I knew exactly what she meant. The shortage of dopamine caused by Parkinson’s does a number on our feelings, thoughts and emotions. And surrounding ourselves with people that understand the struggles and can encourage us in the midst of hard times is a key to fighting self pity. We were not meant to fight this battle alone. We need community.
So there you have it. Is this a three step process to never having to deal with self pity? Not at all. I’m just sharing three things that have helped me in my journey. Find positive, even inspiring examples to follow. Learn to laugh and to find the humor and the positive in hard situations. And surround yourself with caring people, a community that understands and accepts what you are going through with empathy and concern (and hopefully a joke or two along the way!).