Over the past year and a half, I’ve worked for an organization that delivers equipment to ALS patients and their families, among other things. It’s an important organization for so many reasons, and it’s also the organization that helped my family when my Dad had ALS. I remember sitting with the founder on a patio, and having him ask me how I was doing during this time, and he genuinely seemed to care about the answer. That wasn’t something I experienced a lot of during the three plus years my Dad had the disease, and there’s no doubt that it stuck with me. Today was my last day.
“I think my biggest accomplishment from the last year and a half was no herniated disks,” I told my roommate. I’ve lifted a lot of heavy equipment, from heavy-duty ramps to recliners, but my injury-free track record isn’t what I’ll remember years from now.
I think that it’s important when something ends to stop and take stock of what you’ve learned. What follows are some of the key insights from a year and half behind the wheel of a handicap-equipped minivan, as I zipped all over New England taking people to doctor’s appointments, and made sure that they had the right equipment so that they could continue to live a semi-normal life.
Learning to listen: For people with ALS, it can become difficult to speak. It gets harder to enunciate, and most people completely lose the ability to talk. A patient can expend a lot of energy on any given word or syllable, so it’s important to give your undivided attention to them, to even watch their lips. I never wanted to be the person that made someone say something more than once because I knew they didn’t have energy to spare. On my first visit with a patient, I just sat and listened to the interaction between them and my boss. Later on, my boss told me that that was exactly how he wanted me to approach the situation, to just observe and not talk because I was uncomfortable or self-important.
Check your baggage at the door: When making house calls, I’d try to center myself and clear my head before knocking or ringing the doorbell. If anything was bothering me, I learned to put it on hold until after I left. This can be incredibly difficult to do, but I think it’s important to be able to focus your attention on directly what’s in front of you, to go in with no preconceived notions, to just be there and soak everything in, and offer whatever help you can.
Holding space: This might sound similar to listening, and for all intents and purposes it is, but it’s more than that. Holding space is about reserving judgment and allowing someone the freedom to say what’s in their heart and soul, without interrupting them. It’s giving them an atmosphere where they feel comfortable enough to speak freely, so that they can let go of whatever is burdening them. I learned to withhold judgment in so many situations, and have found that judgment itself is largely useless.
The art of conversation: Sometimes people wanted to talk to me about why or how I’d come to be involved with my organization, sometimes they just wanted what I had to deliver and that was it. I was fine either way. You learn to read situations, and figure out what’s called for. You learn when to open up, and when to pull back based on personality and body language.
Compartmentalizing: I didn’t make it through the past year and a half without seeing some things that were truly painful to witness. I’ll carry quite a few of these memories with me, but when I wasn’t working, I learned to put these things away. I hope that I’m able to do that in the future, that when the work stops, I’m able to shift gears and not bring it home with me.
Some people are comfortable with their own mortality: Rather than wallow in sorrow, or bemoaning their current situation, so many people I met know exactly what’s coming, and seem to be at peace with it. I’ve seen people that have found ways to work and be productive with the assistance of others and technology. Their courage is truly inspiring, especially when you get to witness it up close.
Acceptance: For some people, the pain of seeing their loved ones declining is too much, and they haven’t fully accepted what lies at the end of the road. I get it; it’s a painful thing to process and deal with. I think we all like to think that there’s nothing we can’t beat. However, having lived through ALS twice, I know that it’s going to run its course at some point. The most important thing is to make the most of the time you have, to live every day with the person in your life who has the disease. Towards the end of my father’s life, he told me, “You know, these days have been some of the best that I’ve had in a long time.” I felt the same way.
It’s been hard for me to step away knowing how many people still need help, and how many people will need help in the future. I know that during the past year and half, that I did good things for good people, but that the role I was in wasn’t exactly what I’d envisioned for myself. I know that I want more responsibilities, and it was time to change directions. It was difficult all the same, an emotional decision to be sure. I’ve thought a lot about my Dad, and the entire experience of both working for and with the organization. This week has been draining, but I’m ready to move in another direction, and I can’t wait to see what’s next. I’m truly grateful for the opportunity that I was given, and I’m happy that I was able to give something back. There’s nothing but love in my heart right now.
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