Love Always, Joe
To All the Amazing, Loving and Supportive People in My Life,
I’ve written countless songs, short stories, pitches and screenplays in my life but this is by far the toughest thing I have ever had to write.
As you may or may not have heard, in January 2014 I was diagnosed with ALS (Amyotrophic lateral sclerosis) also known as Lou Gehrig’s Disease. While there is much controversy around it, there are a few people who have actually been misdiagnosed with having Lyme disease and Babesiosis, ticborne illnesses which I did test positive for. So I pursued that treatment; Who wouldn’t, right? I did make positive strides in the beginning, for instance on April 13 & 14, I was “normal”, speaking beautifully, walking great, no brain fog, great energy, dexterity, balance – it feels like a dream today. I felt SO good I was actually online looking for a job. Then it happened again: May 18th, woke up like old Joe. Unfortunately, after 5 months of heavy IV antibiotic treatment for these ticborne illnesses it does not appear I am one of those rare but lucky misdiagnosed cases and have since fallen off sharply. The neurologist believes the anti-inflammatory properties of the drugs are what causes these anomalies but my overall deterioration is evident. The good news is you have about a 1/140,000 chance globally of getting this damn thing so now that you know someone who has it, unless you have 140,000 other friends, you are in the clear, lol. So now what?
I will never give up and my family and I are in constant search for alternatives while preparing for possible clinical trials.
Currently, I am no longer in SF but living in NY with my mother and brother. Unfortunately, this was all too much for my wife to deal with and I’ll leave it at that. I love her and I miss her, my three beautiful, sweet and hilarious dogs and the life we built together – I miss it all beyond words, no analogy will do. The collective suddenness of my illness and the loss of what I loved and lived for the last ten years of my life is a heartache I wouldn’t wish upon the devil himself. In early December I was interviewing for a job and shopping for new suits with my wife. On January 22nd the bomb went off. But I must carry on and my family and I will go anywhere necessary on the planet for treatment. I have incredible genes and was in top health before all this happened, so I choose to Believe.
Still there is a great deal of coping that I am learning to do. Part of this struggle is the never ending fear and depression as you hack your way through another day of sobbing breakdowns. (Don’t worry, this ends happily :)) I sit down and think about my life a year ago – living in the best neighborhood in the most beautiful city in America IMHO, a beautiful wife, walking my three buddies every day in the park, eating great food, incredible weather, going to Giants games… I could go on and on, I was LIVING THE DREAM. I was living the dream, yes, but I didn’t even know it and that’s the part that haunts me and makes me sob. I suppose its human nature to take things for granted; it’s what we all do until something bad wakes you the hell up.
I have a deep, deep heartache for how ungrateful and unaware I was for so long, but again, that’s human nature, so don’t beat yourself up, Joe! Ok, here’s the good part…
I wasn’t living the dream because of the neighborhood, or the town, or the digs I was living in or the ways I chose to spend my money. I was living the dream because I had my health and loving people in my life, that’s it, period, end of story. So whether you are in San Francisco, Jacksonville, Naples or Detroit, living in a mansion or a van, delivering the mail or you are CEO, as long as you have your health and are surrounded by people you love, you are in fact, living the dream. That’s it, that’s all that matters in life, period, end of story, that’s the “one thing,” Curly 😉 Forget about money, ambitions, titles, promotions, your career status, the big deal… it’s all bullshit.
Got people to love?
Congratulations you just won the game of life.
So when your feet hit the ground tomorrow morning, and the day after that and the day after that, remind yourself: “I am living the dream.” Gratitude. Take that to the bank, it’ll do way more than gold ever will.
I have been blessed with many wonderful people who have been helping my family and I navigate the clinical trials and find what may be best. I ask that everyone who reads this please join the effort – if you know of anything that may be a possible treatment or if you think you can help in any way, please leave a message in the comment section below. (You can call me but I sound like I just drank 4 martinis, lol.)
Thank you all for your love and support during these times and I will continue to keep my faith, fight and pray that a breakthrough and a blessing is on its way. ANYTHING you hear or know of ANYWHERE, please reach out, nothing is too outlandish, I just want to live, love and laugh again, period.
Leave a Reply