As 2024 has come and gone, I am grateful to take a few moments to reflect on my year. Although it feels like the world is spinning faster these days, as always, it has been a year of “stuff.” Some good, some tough. Some great, some bad. Some opportunities, some disappointments.
In the 2nd half of the year, I was given a gift of being able to break out of my close-range bubble. The environment I was living in had been more negative than positive; too much of “what do they think of me,” unchecked, self-centeredness, and way more fear than faith.
There are several factors that provided me with this opportunity, but a few clearly stood out. First, I lost my job. In my day-to-day, my job defined who I “was.” Second, I had a real, significant health issue. And third, I had to own up that I felt disconnected from my brother, who is living with ALS.
The first event was the pivot point. I quickly realized that losing my job was a blessing. It was controlling my mental and emotional well-being, but it was how I provided for my family. Being told my position was eliminated was the thing I feared the most, but the day I received the news, I felt as if a huge weight was lifted off my shoulders.
With that burden removed, it significantly dialed down my stress and anxiety allowing me to deal with my health issue. It gave me time to think about what I wanted to do, not just what I had to do. It enabled me to be more present for my family. And likely the most important change - I was given the chance to add a missing dimension to my life – helping others in a more formal way.
Missing precious time with my brother, knowing his world is getting more and more limited, really weighed on me. Having followed Brian Wallach on Twitter (sorry, I still can’t call it X), I thought that I AM ALS might be a place that I could lend a hand.
What a wonderful and meaningful decision I made! Joining the team has provided the opportunity to help move the dial, even just a tiny bit, on finding a cure and helping others. More importantly, it’s opened a new avenue into my brother’s world.
For the last several years, my connection with Rob’s journey has been that weekly catch-up call, hearing about what he was going through and offering supportive and loving words. I’ve been available to listen to my sister-in-law and be an ear she could bend. This is exactly what a loving brother should do, but I didn’t really have much else to offer. Missed opportunities to come visit, my lack of information and knowledge about the disease, and being in my own crap, was the culprit of me missing out. Rob’s a stubborn and proud individual and doesn’t want to burden others (does this sound familiar??), so it was a challenge to be in, or be allowed into his inner circle.
Getting involved with I AM ALS has given me a different type of emotional connection with people living with ALS and with incredible care takers and others who are impacted by this ugly disease. It has extended to me have true empathy, with context. In other words, it has given me a foot in the door to have a stronger connection to Rob’s world.
Since I started volunteering, I have been down to visit Rob twice.
The first was for a few days in November, when I got to share with him my participation with I AM ALS. He’s a sports junkie and LOVES the Phillies, so I shared the information about our LGD plans with the plan to get him up to Philly in June. I talked about the Scribes of Strength team and how we are trying to raise awareness, increase information about access to care, and be a voice for those impacted.
My second trip was in mid-December. Rob’s wife Dana, his full-on caretaker, was going on a cruise with her daughter, and I got the pleasure to spend a week with Rob. We ate lots of bad food, watched a bunch of Netflix, told a bunch of guy stories (his memory is way better than mine!), had lots of laughs, and basically were just men behaving like boys. Well, almost.
With love and empathy with context, we had conversations about his journey. He shared with me his frustrations, struggles, anger; he also shared about his loss of independence. He confided in me the challenges of having to have Dana do just about everything for him. Not that I can truly understand what his life is like, but because of my involvement with I AM ALS and his willingness to share, I am able to have a perspective on what he is living with.
The selflessness of those I have met through I AM ALS has enabled me to share slivers of information and experiences that I believe can help Rob. Through the kindness and generosity of others, I am able to have a point of view of what he is living with.
When all is said and done, life is really about connecting with others. Connecting in meaningful, loving, and caring ways. Rob and I have always been close brothers and friends, but in some way, because of ALS, the higher powers of this world enabled me to have a more intimate connection with him. Whatever twists and turns his path lays in front of him, I will be able to be there to support him in whatever way I can.
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