Like a sword forged in fire, Parkinson’s can make us stronger.
Parkinson’s is often depicted as a ruthless and relentless taker. And in some sense, this progressive neurological disease is rightfully depicted this way. However, under the right circumstances Parkinson’s can be the gift that keeps on giving.
Before I dig into how I have benefited from Parkinson’s, I want to first point out that I have only been able to do so because of my fortunate circumstances. Firstly, the treatments I have available to me, while not perfect, do provide effective relief. Second, the society I live in is generally accepting of people with disabilities, including People with Parkinson’s (PwP). Third, I do not experience financial hardship due to Parkinson’s as I have a good job and have good insurance. Under these conditions, I am afforded the opportunity to grow and “benefit” from Parkinson’s.
There are unfortunately those who are not so lucky. Lacking access to medication and living among people where Parkinson’s is considered a “curse”, not the disease that it is. Though those people may well experience tremendous personal growth due to their suffering, I would be hesitant to suggest that they could “benefit” from their malady under the difficult conditions they face. For more on what it’s like for the the unfortunate souls who get Parkinson’s in places like Africa: https://www.youtube.com/watch?v=GlCa_rErykI.
That one can benefit from suffering is not a new idea. Dr. Todd hall talks about eight ways suffering helped him to grow when his wife was diagnosed with breast cancer1. What follows is a list of seven of those gifts. For each of them, I’ve written a little of how Parkinson’s provides these gifts to me.
A deeper appreciation for life – Parkinson’s forces me to practice gratitude regularly. A recent example of this happened the other day at work when I needed to go pick up some project related items. A simple task. I literally just needed to walk maybe 300 ft down a hallway, unlock a door, grab some items off of a shelf, and walk back. But, I was having an off day. I stumbled down the hallway, leg dragging. Then with great difficulty, I fumbled to get the door unlocked Finally, I fell into the room exhausted and sat on the floor to take a badly needed break. As often happens in such situations, I reflected deeply. I can’t help but think that my disease is only going to get worse. That someday, I won’t be able to get down the hallway at all. I’m inclined to think of all the things in my life I’m thankful for. Parkinson’s gives me a sense of how ridiculously temporary all of those things are. My kids, my parents, my wife, me. All temporary. Everything in my life is temporary. At once, I can’t help but be struck by just how beautiful that is. Suddenly, I’m reminded yet again to take nothing for granted as one day it will be gone. This makes my life richer, fuller, more meaningful. My week is filled with revelations like this, courtesy of Parkinson’s.
Positive change in priorities – During the course of the day, I swing un-predictably between being “on” where my body is functioning correctly and being “off”, where my body is not functioning correctly, and anywhere in between. I spend a significant (and growing) amount of time each day waiting for my body to work. In this way, Parkinson’s teaches me daily that I have no control over the time I have. I have a sense of how precious time is and I apply myself to what matter most.
Increased personal strength – A few years ago, prior to being diagnosed with Parkinson’s disease, everything in my life was difficult. Things that most people take for granted like walking, driving, typing, thinking…literally everything was hard. My days were filled with physical and and phycological challenges. Over the course of many years, Parkinson’s had slowly robbed my body of the neurotransmitter dopamine, wreaking havoc on my ability to move and think efficiently. I knew something was wrong but (being a bit bullheaded) I tried to ignore it. Doctors attributed the pain I had in my feet, knees, hip, shoulder, and fingers to stress. I thought I was working out too hard. When you are expected to function normally in a body that is increasingly slow, stiff, and anxiety-ridden, that’s a level of hell I wish on no-one. Now, having been diagnosed and subsequently properly treated, I now understand that I had developed super-hero strength, just to get through life. Having lived through this showed me that I’m capable of immense personal strength.
Deeper appreciation of vulnerability – Here, Dr Todd writes, “I have realized through this experience that the reality of uncertainty is deeper than the illusion of certainty I used to live in. This realization brings a strange sense of peace.” Parkinson’s reminds me of how vulnerable we are in a myriad of different ways. Every time I take my Parkinson’s medication (every 4 hrs), I’m reminded of how the only thing standing between me and living a miserable, bed-ridden life, are those pills. I mean, the exercise is of course a critical component of my overall health, but without the pills, my life would be totally different. In addition to a sense of peace, this special insight I have as to our vulnerability, gives me a deep sense of humility, and makes me more in tune with my fundamental need for others. I consider the perspective that I have gained through the realization that none of us has much control over anything. A very powerful gift.
Acceptance of limitations – If I didn’t learn to accept my limitations on a daily basis, I would be in a state of near continual frustration. Parkinson’s teaches me to let go, accept what is, and just make the best of every situation. It turns out that this is a very valuable gift. I think having Parkinson’s has made me more tolerant of inconveniences and generally more patient overall.
Increased emotional expressiveness and self-disclosure – Here Dr Todd writes, “In the wake of suffering, many people find themselves expressing their emotions in a more open way. This often strengthens relationships and social support as one becomes more willing to accept help. People experiencing suffering need to talk about their experiences.” This has certainly been true for me. I am quite driven to share the experiences I have with Parkinson’s. I share my experiences in hopes that I might help raise awareness among those unfamiliar with this devastating disease. To those who do have the disease, I hope they can read my words and know they are not alone. I consider this ability to openly share with others a valuable gift.
Compassion, empathy, and intentionality in relationships – Because Parkinson’s has caused me profound suffering, I have a deep sense of compassion for others suffering. Moreover, I’m more in tune with others needs. This sense of empathy has served me well both in my personal life and on the work front. Being able to see from another persons point of view can be a very valuable skill in the workplace. It has enabled me to foster strong relationships with many talented people, making the projects I work more likely to be successful.
In addition to these seven gifts that Dr Todd discusses, I would add three more that Parkinson’s provides for me:
Induction into the YOPD Club – I’m fortunate to live in the era of social media, where I can join an online community of Young Onset Parkinson’s Disease (YOPD) sufferers. It gives me a great sense of community that I don’t believe I would ever have experienced had I not been diagnosed with Parkinson’s.
Good Health – Parkinson’s turns out to be a very compelling motivator to take care of ones health. Because of how much exercise and a good diet help me manage my Parkinson’s symptoms, I have absolutely no excuses. Besides having Parkinson’s, I may well be in the best shape of my life.
Sense of Purpose – Before being diagnosed I was just kind of fumbling through life not really knowing what i wanted to do. Now, I have a kind of laser focus on things that I never had before.
Parkinson’s is a difficult, lifelong disease. It’s always there. At any time it can, and will challenge me. Teaching me valuable life lessons over and over and over….
Joe thank you for continuing to support me on my journey. I’m glad that you get inspiration from my posts!
Thank you so much for for the kind message. It has always been my intent that my posts would help…
Thank you for your posts. My son who is 32 was just diagnosed and is having a hard time dealing…
I try to use your words as a simple rule for the challenges that confront me. Facing the problem and…
thank you for making this happen and supporting Gavin he has an amazing vision greatly appreciated