The five weeks between my first meeting with the neurologist and my official diagnosis were a roller coaster of emotions. I’m sure I don’t even remember that time clearly. Especially the week in Guadalajara, but that’s a different story for a different time. Let’s just say that trying to drown the sorrow of ALS actually takes more tequila than Tequila had to offer that week. I give myself an A for effort though. A plus if we’re being open and uncensored.
My first task was getting an MRI, which was pretty straight forward if you’ve never had one. Lay on a table that slides into a tube and don’t move for an hour. You get some nice music to relax to and maybe snooze a little if you want. I’m mildly claustrophobic, so I got some Valium to take the edge off. Easy peazy.
Keeping my ALS secret was a little more difficult to say the least. I was boiling inside and had no real outlet. Part of me was praying for a misdiagnosis. Part of me was still in shock and trying to think through damage control. Hope for the best, prepare for the worst. This is exactly where I was.
Jennifer, my beautiful wife and the center of my universe, had just passed away 8 months earlier from a short and particularly nasty battle with colon cancer. My daughter and I, and everyone else for that matter, were still reeling from her death. Plus I had a business to run, a teenager to raise, life things to contend with. To say that ALS had poor timing was an understatement. I knew Things were about to get incrementally worse so I had to have my facts straight. I kept my secret and pressed on.
The EMG was next. I had to have two actually, each a week apart. I had a good idea of what was about to happen because I googled it , of course. And my anxiety was pretty high. Basically an EMG is a test where two needles are placed at points in different muscles and an electrical current passes through and makes sounds. Good muscle makes little sound. ALS muscle is noisy. It’s a Fairly straight forward premise. The goal is, Don’t make noise.
As I lay on the table, worrying and listening to the speaker, it was difficult to relax. The needles are not small and the process is not quick. Relax, relax the guy kept saying. Sure buddy, I’ll relax. I imagined I could hear the difference in sound between my left and right sides, upper and lower body. Then it was time to do my tongue. Yep, a big fucking needle inserted into the side of the tongue. Do you think that hurts? Hurts like hell! Then it was over, until a repeat the next week. I considered not going back, but I did. I had to have all of the facts I could get. The second round was more of the same. Pain, needles, noise, tears. Bullshit!
Diagnosis day finally arrived. Again, I sat by myself, alone in the examination room. The neurologist’s assistant came in and started going through the usual questions when I interrupted her. I was here for test results, nothing more. She was confused and left the room to get the doctor. A few minutes later she returned. You’re here about ALS she asked? Is that correct? Good grief! Yes I mumbled and she exited the room once again.
This time When she returned her demeanor had changed and her nervousness was obvious. Apparently The neurologist was busy and would not be able to join us. Can you believe that crap? I swear she must have been checking the google herself. Her voice quivered and croaked, I’m sorry Mr. Craig, you’ve been diagnosed with ALS and you have 2 to 5 years to live. You should go home and contact your family and get your affairs in order. There is little more we can do for you. She then stood up, handed me a pamphlet for ALS Association and one for Radacava, a drug that may extend life 3 months. I’m sorry she said with watering eyes, and I never saw her again. As a matter of fact, I never returned to that office again. What a bunch of pathetic cowards they were.
I walked back out to my truck. It was a beautiful spring day in the high Sierra and for the second time I stopped and vomited into the bushes, before preparing to call my brother with my confirmation. This time my tears flowed and I broke down. Why me? Why now? What The Fuck! To this day, three and a half years later I still Struggle to accept my diagnosis and perceived fate. I still throw rocks at God. But it hasn’t been all bad.
Alright! Again, that’s enough about my story. There are 6000 new ALS stories each year and it’s my understanding that number is on the upward trend. It’s a fucking crime that ALS remains under the radar. ALS is most definitely not a rare disease. Yet, here we are so forward we go.
By now You should have given some thought to who you’d like on your team and what they will do. You’re the boss though! Remember? The quarterback! The big cheese! You are the King, or Queen of planet ALS! As much as you’d like to give away your crown of thorns you can’t. So suck it up, buttercup. It’s going to be a little bumpy. Hahahaha! Yes, that’s supposed to be a laugh.
Do you have a primary care physician? No? Get one and get them on your team. If they need a gentle reminder that they work for you, you have to speak up. You need them to take care of everything else that might be trying to kill you while you’re busy not being dead from ALS! Oh yes. You’re fighting everything now. ALS is just what they call it because it’s not anything else. Confused yet? It’s ok pALS, we all are. But having good doctors in your toolbox is always a bonus.
Who is your number two person ? Your copilot? Your wingman? Who is the person that is going to be there no matter what? The till death do us part person? Since my wife passed away, that person for me is my brother. That guy is a rock! You have to find your rock. Maybe your foundation is going to be made up of a few rocks. Whatever works for you. You’re the boss! I’ll talk about caregivers in-depth in a future episode but get on it now! If you haven’t yet, you’re going to have to ask someone to wipe your butt. This is a bonding moment that most people will never experience. Get ready now.
You also need a spiritual guide on your team. God? No God? Many Gods? Whatever floats your boat my pals but get help for your head and your soul and soon! Fear, anxiety, depression, and
anger these are all part of ALS and you won’t be the exception. Get the bad stuff out of your head as best you can, as often as you can. Make this a top priority! Everyone around you will benefit or suffer accordingly. ALS is hard. Don’t do it alone. You won’t make it. And you don’t have to do it alone. Well…you know what I mean.
As they say, get your affairs in order. I will be talking about this at length in the future as well. For now if you can afford an attorney you might consider adding one to your team. There are resources out there to help if you are a do it yourself CEO so don’t let anything stop you. You are going to have to deal with all kinds of things like Advanced Directives, medical power of attorney, wills, banking, Medicare, all of this can make your head swim. Get good advice. Don’t put it off. You and your team will sleep better knowing you have your shit together.
Last, for now, seek out good physical therapy and nutrition advice. Your ALS clinic and PCP will help get you started but unless you are at a major health center very few professionals out there are familiar with ALS. Very quickly you will be an expert in ALS and you’re going to have to teach the pros what works for you and what doesn’t. Trust me on this point.
Lastly, I treat ALS like a job. I work 5 to 6 hours each weekday and then I clock out. Well, as best as anyone can put ALS away. And I go live life on my terms. No ALS outside of business hours. I encourage you to do the same if you can. Fuck ALS! It’s just a mild case of ALS anyway.
And until next time, feel free to ask me anything.
