My name is Rich, and I’m living with ALS.
Emphasis on the living part.
Talking about my life lately or sharing in general about my journey hasn’t been real easy for me. Which is kinda surprising since I’m generally an extremely social person, like to talk and have always loved to write. I haven’t written a blog in years so I find myself back here in an attempt to connect and share with others. This time I’m not blogging about Live Music, my favorite pastime, but something much more personal. My own journey to live through the most trying times I’ve faced to date in this wonderful life. So if you’re here, reading this I thank you and I will attempt to be honest, forthcoming, informative and hopefully sometimes witty. The subject matter will revolve around my attempt to navigate the dark, murky and scary waters of a condition for which there is no cure, so there’s that. My goal is to focus on the challenge to find a cure, and enjoy life till there is one.
With that let me catch you up a bit.
If you are reading this, chances are you’re a family member, a friend, an acquaintance of mine or you or someone you love is facing a diagnosis of amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease as it’s more commonly known.
First of all I want to assure everyone that I’m currently doing everything I possibly can to combat this ass kicking disease and if you’re here on this blog because of your own struggles against ALS, you’re a family member, or caregiver to someone… I am here to tell you that you are not alone. All of the emotions flooding in right now are all appropriate and have been experienced to some degree by each and every one of us affected by ALS.
I was diagnosed with ALS at the age 53. But my symptoms began a few years earlier and can be traced back to the winter 2014. It was during an ice storm one morning on my way to work that I slipped and landed hard in the cold rain and snow. I thought nothing of it at the time, I picked myself up and kept on walking. This would be the first of many days to come with a stumble or fall. The journey toward a diagnosis was a long one with more than a few wrong turns. In the end, after almost two years of countless doctors and tests, all that was left on the table was ALS.
While first searching for answers, I kept telling myself it couldn’t be anything serious. I took a major header and must have injured myself. After a few months I started to develop a bit of a limp. Off I went to the doctors and the basic tests and work-ups showed nothing of any concern at all, Physical Therapy was prescribed and I was on my way. I didn’t know anything about ALS besides the famous speech by Lou Gehrig at Yankee Stadium and then of course the Ice Bucket Challenge with everyone sharing hilarious videos on social media. I felt just fine in general, so it couldn’t be something like that? As I eventually learned, every ALS case is unique. There are similarities, but the disease affects individuals in different ways. Over the months that we were zeroing in on a diagnosis, I spent many hours on the Internet searching for information about various neurological disorders.
When my diagnosis was confirmed at the Mayo Clinic in snowy Rochcester, Minnesota it felt like a door slammed in my face. Months and months of testing were over. But I didn’t like the answer. Grief, anger, hopelessness, and fear were just some of the emotions that washed over me. No one wants to hear that they have an incurable illness. But when you think about it, life itself is 100% fatal, right? You’ll excuse me for not taking much solace in that at first. But it’s true we are all living on borrowed time. The faster I came to accept this fact, the faster I could allow love and joy back into my life and start to fight. And as with every other challenge that I face, I just take this one day at a time. Sometimes even just a minute at a time.
Now, here’s the good news. I have access to resources that are helping me with daily living. And here’s something I have learned: having ALS has allowed me to slow down and spend more time with my family. I’m still doing so many of the things I like to do, going out to see music is a big one. Reconnecting with friends both old and new. My priorities have changed somewhat in that I realize the value of relationships more than ever before. ALS may limit my activity but it can never take away the love of my family and friends and my relationships with them.
My life has taken an unexpected turn but I am still me. ALS is now part of my life but it does not define me. I’m ready now to let others in. To be an advocate, help others and help drive the movement to a cure.
So this will be the space where I will sometimes share my unfiltered experiences and thoughts. And not just the sad stuff but all the great stuff. There’s a lot of awesomeness to be had.