Post written by Scott Craig
Nobody is coming to save you. You’ll have to save yourself.
How do you process something like an ALS diagnosis? Where do you even start? The only true answer is, nobody knows. With this disease everyone is making it up as they go, just like I am. ALS has so many variations that most scientists are throwing spaghetti at the wall to see what sticks. I believe that most people could try every trick in the book or do nothing but sit on a beach and very likely have similar outcomes. Of course there are a few outliers making some progress but a cure? No. A cure is Years away. A Treatment that makes a substantial impact? No. Sorry. Maybe if NurOwn gets approved but that’s a long shot. But don’t take medical advice from me. I only play doctor.
I’m not saying these things to depress you. Quite the opposite really. And I’m not here to suggest you shouldn’t fight for your life. This is all about fighting for the quality of your life. Unfortunately, the timeline for the rest of your life has probably been shortened considerably. Just like mine. The sooner you can wrap your head around your new reality the better. Harsh! I know.
So, what did I do when I got my diagnosis? I panicked! Yep. Totally panicked. I’m going to back up a little and talk through some of the 5 weeks between my speculative and formal diagnosis, including the trip to Guadalajara.
The trip to Mexico had been planned for some time and was a business trip to tour The Patron tequila distillery. The timing couldn’t have been better for me to escape for a few days and try to collect my thoughts. The funny thing is, I was just in Guadalajara in October for a friend’s wedding and that was when I felt my first symptoms of ALS.
That first trip, after checking into the hotel after a red eye flight fueled by coffee and tequila, I experienced what I thought at the time was a panic attack or even a nervous breakdown. I had yet to hear the words fasciculations, spasticity, and pseudo bulbar, but I would soon. I knew something was wrong. I already had ALS. I just didn’t know it. I was there for a wedding and to blow off some steam and nothing was stopping me so I shook it off.
The second trip to Guadalajara was very different. It was half business, half vacation and an excuse to try and run away from my problems. While the trip was fun and full of distraction my brain was on overload. I don’t have a very good poker face and my inner turmoil showed on my face. Everyone was so supportive! Huge efforts were made to cheer me up after Jennifer’s death and now the other shoe was going to drop in the worst way. I was just black and cold inside. My grieving for Jen was pushed to the back as my own mortality was shaken. I couldn’t even process how I was going to tell my daughter my terminal diagnosis. What the fuck? I was so angry.
As I tried to process my situation, one thing became clear to me. I fully intended to be an outlier. 10 percent of pALS live 5 years or more. That’s my goal. Problem solving and efficiency are two things I am good at. In my world, everything is on a sliding scale and ALS would be no different I told myself. There was always a fix or a workaround, I just needed to find it. I leaned my head against the cool glass of the shuttle and stared at all of the agave fields as we passed by. I don’t know if it’s possible to be any more alone than I was at that moment.
As we turned off the highway and passed through the gates of Casona Patron I was reminded that no matter my inner turmoil, the outside world was moving along just fine without me and would continue to do so. ALS is an inside thing. Inside me. Life wasn’t stopping for me, hell, it wasn’t even slowing down so I could catch my breath. I had a big decision to make. Well, lots of decisions actually but one was going to affect all the others. Was I going to lean in and put my shoulder into ALS, fight with my wits and wisdom to make every breath, every moment count? Or was I going to let fear and dread creep in and start building a wall around me? You, out there listening and nodding your head, you might think this an easy choice. I’m here to tell you, it’s not. Actually either choice takes a great amount of courage and conviction. A lot of people opt out early by either taking their own life or eschewing the life-extending stop gaps such as feeding tubes and ventilators. Can’t say I blame them one bit. Both decisions are incredibly scary and deeply personal.
As The shuttle pulled through a circle of incredible landscaping of agave, desert flowers and beautiful Mexican architecture. The sliding door opened and the high desert heat rushed in. We were met by our host and a small army of hotel staff to welcome us and take our bags. For the first of many, many times to come, I acknowledged my diagnosis and then I shoved ALS to the far back of my mind. I stepped out of the van and into an experience that was so over the top, I couldn’t describe it to do it any justice, so I won’t even try.
Welcome friends! Would you like a cocktail?
Why, yes! Yes I would love a cocktail. thank you very much!
Alright! That’s enough about me for one podcast. Let’s talk about living with ALS. In episode 3 I spoke about having office hours for ALS and then putting it away for the day. The questions were asked “what do I mean?” and “how do I do it?” Good questions!
Obviously ALS is a 24 7 disease with no days off. You know that. None of us knows if we’re going to be a 2, 5 or 10 year statistic. Really, all we know are 2 things. We have a ‘ridiculously shitty disease and there is no cure. For me, the second part is a little liberating. Crazy! Right? But I don’t have to worry about medicines or frequent doctor or hospital visits because it really doesn’t matter. Special Diet? Nope. Alcohol, drugs, exercise, chemo? Nope. Nope. No and nada!
I’m not suggesting you just throw good habits and caution to the wind but, let’s be honest, what you do or don’t do probably isn’t going to change your trajectory much so you really don’t have to worry about it. That’s a lot of freedom from stress my pals.
It’s super duper easy to let ALS consume your life. Don’t let that happen. The internet and social media are a treasure trove of what ifs and grasping for straws so you need to manage it. Set yourself some guidelines and keep to them. Do your research and due diligence. Take good notes, maybe some networking or share some good ideas. And then turn that shit off and get back to living your best life! Get outside. Paint. Read. Organize the pictures on your phone. Hang with friends. It doesn’t matter what you do but it does matter that you do something. Do something for you! Better yet, do something for others.
Do the same routine the next day. It’s not perfect but it helps. You’re the boss. Not ALS. Be brave and have courage. Surround yourself with people who make you feel normal. Ignore the others.
When ALS pops up uninvited, and it will, deal with it as best you can and then put it away again . I know this sounds polyannish but give it a try. Have a good sense of humor and be patient with yourself and others. Besides, it’s probably just a mild case of ALS.
More about preparing for the unexpected in the next episode. Until then, you can ask me anything.
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