Time to spread the news.
The diagnosis was now officially in. I was still going to seek a second opinion but it was clear that I had ALS. It was time for me to start making a few phone calls. I really don’t have the clearest memory of how this part played out. The mind can hide trauma pretty well and tequila took care of the rest I suppose. I don’t drink anymore, mostly by choice but my body and brain can’t handle it anymore anyway. Every once in a while I’ll order a drink from some unconscious habit but I’ve decided that I’d like to be present for this chapter of life so I usually skip the booze. Not sure I miss it that much anyway. I do miss my people though. I have the very best friends.
My brother knew about my diagnosis. I’ve established that. But that was the extent of my secret, until now. I think I told my mom but I know I pawned some of this terrible task on my bro. I just couldn’t get the words to come out of my mouth without sobbing like a donkey. Yep, I bray like the Ass I am when I become inconsolable. It isn’t a pretty picture. I’m an ugly crier.
Next up was my boss and close friend. I think I texted him first as a heads up before calling him. I’ve poured myself into my work for the better part of 16 years. We’ve also been dealing with my wife’s colon cancer and premature death which had really stretched everyone. I was just getting back into a good rhythm and picking up the pieces I’d been neglecting and now I was going to blow it all up again. This time for good.
I don’t know how long I sat and stared at my phone before pushing the button. I steadied myself as best as I could and when Tom answered I began to share what I knew, trying to stick to the facts. Tom is a rock. We’ve had many deep and difficult conversations over the years so he knew by my voice something was very wrong. Once I got through the basic information I asked Tom to not tell anyone else until I told my daughter. He agreed but I was now on the clock. Information of this magnitude, an ALS diagnosis, it affects a lot of people. When the call ended I knew I was supported and loved. My life just kept unraveling before me and there was little I could do but stand by and watch.
I’ve had some difficult conversations over the course of my life. It’s the only way to facilitate change and grow in business and in life and I was good at it. They call it compartmentalization. There were a lot of times I was maybe too good at it. I could have ice water in my veins if the situation required it. It was only a year and a half earlier that I had to tell my daughter that her mother had terminal cancer. I needed that ice water now.
When I pulled into my driveway my buddy and good neighbor Ron was in his front yard and I just went for it. As I was dumping my life on him his badass wife pulled up and we pulled her into planet ALS. Once the tears and hugs mellowed out I asked them to come be in the room when I told my daughter. It was a Tough thing to ask. Tough thing to agree to but there were no other options as I saw it. Hiding ALS is a little challenging.
After telling my daughter that I had ALS I was truly numb inside. She was in shock. We all were. It took her 10 seconds to google ALS and start asking me questions. I don’t lie to my daughter.
The questions flowed and the unraveling of our reality continued unabated. Once I convinced her I wasn’t dying in the next 24 hours She grabbed her phone and earbuds and stomped to her room slamming the door so hard it shook the house. I went the other direction and headed next door where my other badass neighbors had a supply of premium tequila on hand, in case of emergency and I shared the bad news for the last time that day.
I have Amyotrophic Lateral Sclerosis. I have ALS. Damn. Just damn.
Alright! Enough about me. Let’s talk about you.
Do you share your news of your diagnosis and how do you decide? It’s a very personal and private decision to say the least and I’ve been on both sides of it. Jennifer didn’t want to announce her colon cancer diagnosis beyond the immediate family and we didn’t for a long time. It wasn’t a secret per se but we kept it close to home until it became glaringly obvious. I disagreed with that approach and respected it but it wasn’t my call.
I took the opposite approach.I told everyone, everywhere. Not only was I panicked and angry, I wanted people to know that ALS isn’t rare. And I needed help. A lot of help.
Announcing that you have a terminal disease like ALS is tough. Nobody likes bad news but people will go out of their way to avoid death, pain and suffering. Who can blame them really? The saying ignorance is bliss is a saying for a reason. Facing mortality is hugely unpopular. You have to be prepared for a certain amount of people to fall back or pull away entirely from your life. Who some of those people are might be a surprising and sad gut punch.
Fortunately, the opposite is also true. People will step up in the very best ways and you won’t even see it coming. People who you thought were merely acquaintances will blossom into new and beautiful friendships if you let them. So let them.
If you’re like me, stubborn, handsome and fiercely independent, when someone asks how I’m doing or what I need I would answer, with fine or nothing because I didn’t want to be a burden. Grandma would call this pride. Well, get over it! I’m not a burden and neither are you. We’ve just drawn a bad hand through no fault of our own but we’re no different than anyone else. Everyone has troubles and suffering. No one gets out alive. Unfortunately, it’s our turn. Sorry. Suck it up!
Now here is the secret to making ALS livable now. Today. When your people offer to help you, you say YES! Yes please! Then follow up with a heartfelt Thank you! You will need to participate here. It’s your job to know what you actually need. Don’t be greedy and don’t be a pain in the ass, but speak up! It’s how the world works.
Here is the second part, give back and help when and where you can. You’re not dead, you have a terrible and shitty disease but life is for the living. Your brain still works. Well, mostly. Computers open the whole world if you care to step into it. Write letters, paint, volunteer a little. Whatever floats your boat. The more you attempt to contribute the less burdensome you’re likely to feel. The more you’ll find purpose.
Back in the 80’s and 90’s this was called a paradigm shift. A new view point. Your life before ALS has been changed forever. You can Mourn it. Remember it fondly. Maybe burn it and bury it. Whatever you need to do to realize that you are right here, right now. And You’re ok. You’re still alive and you’re not alone. My cancer family called it EGBOK, everything is going to be ok. My Colontown family used KFG as a rallying cry. Keep fucking going. Me? I just muddle along with a mild case of ALS.
Until next time, and as always, you can ask me anything.
