By Troy Neville
Living My Purpose – With PLS
We all have a purpose in life, even when life goes sideways. Recently my employer, Truist Financial Corporation, asked all employees to create a statement of personal purpose. Truist’s corporate purpose is to inspire and build better lives and communities. It is Truist’s “why”. The goal of the creating a personal purpose was for employees to each find their “why”, how I want to show up for myself and the people in my life.
What I came up with was:
Doing my best, helping others, solving problems and dancing in the rain.
Doing my best: Both the Boy Scout and Eagle Scout Oaths contain the words, “On my honor, I will do my best”. Those are not just words to me, but a daily goal. However, it is also a recognition that we all make mistakes. Sometimes the outcome is not what we had hoped. The goal of an Eagle Scout is not to be perfect, but simply to try to do our best.
Helping others: Another part of the Boy Scout Oath is to “Help other people at all times.” That is quite a challenge, but one that has been easy for me. I have been helping others going back to high school. I was on my school’s audio/visual team. I created a student tutoring program and tutored others in Algebra. I was a student assistant in my school’s lifeguard certification class. As an adult, I was a Red Cross disaster volunteer for 10 years, and a volunteer firefighter and emergency management volunteer for 30 years. I am also an adjunct professor, helping students learn and understand the ins and outs of continuity and disaster planning. At work, my focus is to help others – and my company – achieve success.
Solving problems: I have a very analytical brain that I can apply to virtually any situation: a building on fire, an approaching hurricane, finding continuity planning gaps and mitigating them, how best to manage my disability, and working to solve whatever problems someone has in my little corner of the world. Each problem is a challenge that I take personally and will do everything I can to solve it. An ‘Architect’ (16personalities.com) lives to analyze and problem solve.
Dancing in the rain: This is a reference to a poem by Vivian Greene: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” With PLS as a physical disability, this poem was inspirational to get me to work past my disability and focus on what I can do.
Living My Purpose At Work
I am a Risk Officer in continuity planning for Truist, and continuity planning is in the bad day business. The truth is bad days are inevitable. It is a question of when, not if, a bad day will occur. Continuity planners try to prevent, mitigate, respond to, continue on and recover from the risks and impacts that bad days have. That means there are a lot of people to help and a lot of problems to solve before, during and after a bad day – a perfect fit for my purpose and my skillset.
When people at work reach out to me, my first response is usually, “How can I help?” because I know they are likely reaching out and hoping I can help them solve whatever problem they are facing.
There frequently are pop-up storms (emergency projects or actual weather storms) that require working late or on weekends – that’s me doing my best, helping others, solving problems, and dancing in the rain; living my purpose.
Living My Purpose Outside of Work
We all face bumps in the road. Some bumps are bigger than others. It can be a physical disability, depression, addiction, cancer, troubled relationships, or the loss of a loved one – to name just a few.
I hit a huge bump in the road in 2016. I was diagnosed with Primary Lateral Sclerosis (PLS), a rare motor neuron disease. In layman’s terms, PLS is half of ALS, and both PLS and ALS have no known cause or cure. ALS is fatal, often within 5 years of diagnosis. Thankfully, PLS is not fatal, but it does impact my speech and ability to walk; I walk with a walker. There is no cognitive impact. PLS is degenerative, but the progress varies patient to patient. Some PLS becomes ALS within 3-4 years. Again, thankfully, my PLS has been steady if not improved over the past 5 years and my doctors have said it is very unlikely my PLS will ever become ALS.
My world was turned upside down, faced with uncertainty of disease progression and loss of what I used to do – firefighting, cutting the grass, going shopping, vacations – and daily life.
I happened to come across a poem by Vivian Greene: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” That hit me and provided a focus: I needed to learn to dance in the rain – well dancing is hard to do with a walker, but I did my best. I actually have a box sign with the Vivian Greene poem at my kitchen window as a daily reminder. Now I had a new problem to solve: my PLS.
In 2017, I connected with a physical therapist at Bryn Mawr Rehab Hospital – a 75 minute drive from my house – and we started intensive physical therapy, which included robotic gait training and a stationary functional stimulation bike. My BERG balance score went from 29 to 48. Not something that someone with PLS should be able to do. I purchased a functional stim bike for my house to try to maintain what I had just accomplished in PT.
Then another huge bump in the road happened in late 2018. The challenges of PLS weighed on my wife of 14-years. Divorce – another storm. I needed to keep trying to dance in the rain, but now without a partner.
I returned to physical therapy in 2019. This time we were able to get my BERG score to a 52, and I was finally able to walk on a treadmill without the robotics, including my treadmill at home. Again, not something someone with PLS should be able to accomplish. I was working to solve my PLS problem – or at least getting help to push, pull and drag myself further uphill on my long downhill journey.
And I realized something. I had seen my PLS and divorce as a daily rainstorm. It wasn’t. There were many bright sunny days. Yes, I had PLS, but that was just part of who I was now. Yes, there would be new storms and challenges, but my PLS did not define me, and I could still achieve great things – just different things than I had in the past. It was a moment of acceptance. But what are those other things?
In August 2019, I became an adjunct professor at Millersville University teaching continuity planning. To overcome my speech issues and to make the student experience better, I use a commercial grade text-to-speech software for the lectures. I use the same software when I make longer presentations at work.
The truth is, we often did not choose the hand we are dealt, but if we have trust and faith in the hand that dealt it, we can still realize and achieve our purpose in life.
My purpose is to do my best, help others, solve problems and dance in the rain. And with PLS I could still live my purpose. I could no longer drive fire trucks or run into burning buildings, but I could still do other things to make my little corner of the world a better place. I just had to look harder.
During the pandemic, most of my focus was on work, sometimes very long weeks – helping others and solving problems. In 2022, with the pandemic activities easing, I felt the need to helping others outside of work, as well as help myself (better work/life balance), but was not sure what to do. With my manager’s support, I returned to physical therapy at Bryn Mawr in 2022 for the first time since 2019, and again worked back uphill to where I was in 2019, plus some.
While in physical therapy, I became aware of the need for some equipment in the therapy gym that did not make the budget – some walking poles. Rather than donate money that may not end up getting the needed equipment, I took the initiative and solved the problem on my own: I researched walking poles, bought 3 sets of poles, and showed up with them at my next PT appointment. I also found videos from the company that made the walking poles and put together a training course that could be shared with other physical therapists. My PT could not believe what I had done. The therapists had been without poles for more than two years and were excited to finally have the equipment that they needed. They immediately started using them with their patients. I also learned about the need for a weighted vest to aid people with balance issues. I arranged with the manufacturer to buy that vest too for the PT gym.
I like to listen to music while I am working, which includes during PT. So, I bought a Samsung tablet for the PT gym and loaded more than 2500 songs onto it. The other PT patients love it. I caught my physical therapist singing along and head bobbing to the music more than once. Since my PT was coming to an end, I also gave them an Amazon gift card so they could purchase other small equipment that may not have made the budget and may not be possible with the hospital procurement process.
These small gifts had large, cascading impacts both on physical therapists and current/future patients. It was me living my purpose, doing – and being – my best, helping others and solving problems where circumstances placed me – and with my PLS.
I am followed by the PLS/ALS clinic at Hershey Medical Center. In 2021, I had made a token donation of 20 small box signs with Vivian Greene’s poem on them, the same one at my kitchen window. The clinic psychologist handed them out to families struggling with ALS. A volunteer who helps to run the ALS support group (her husband has ALS) had received one of my signs in 2021, and it had a meaningful impact.
I had offered to buy 20 more for the clinic in 2022. They were preparing for an upcoming Caregiver Day and thought they would make a nice gift for the families. The problem: they needed 100 of them, which was not a trivial expense. The clinic psychologist said, “Don’t you dare spend that kind of money on this!” But I dared. I had to stay true to myself and my purpose. I bought 120 of the box signs and shipped them directly to the support group coordinator. This small act will bring comfort and have a meaningful impact for 120 families struggling with ALS. While my PLS is only half of ALS, I can relate, and I know the value and impact that this little box sign had for me. It may also mean more to them coming from a patient with PLS – we are all in the same boat and on the same team, though our journeys will be different.
With diseases like PLS and ALS, what we can do changes, but hopefully it does not change who we are. We all still have a purpose, though our purpose may also change with our abilities. The same is true for caregivers. There are opportunities to fulfill your purpose. Some may be hiding in plain sight, wherever you are, even if you are in a rainstorm. You just have to look for them, and then choose to live your purpose.
