A Warrior.

I’ve been throwing the term “warrior” out there a lot recently in describing myself and others battling in my world. For a while now I had been searching for an appropriate word that depicts a fighter. This is because that’s the mentality I must have to push myself forward each and every day. Almost like a mantra I repeat to myself each day. It seems so silly to me sometimes. But even when you know in your heart there’s no giving up, for me I have to acknowledge it out loud and hear myself say it.  I’ve been advised by friends to come up with a #hashtag that would stand out and could describe me. The only thing that came to my mind (that wasn’t already taken out there in the interwebs) was #ALSWarriorRich. Yeah I know… slick and sexy, it is not!

So in this post today I would like to write about what a warrior means to me, because it became very clear and very real to me this week. You see this week I lost someone in my world. A fighter, a brave man that looked down the belly of a beast and battled heroically till the very end. A Warrior.

I’d like to introduce you to my friend Jack. Jack was a good friend. We met under difficult circumstances about 10 years ago. We were joined in a different type of battle back then. We built a friendship. We laughed, played guitar together, learned a lot and we were there for each other for a short period of time which felt like ages. After that we would share a front row seat next to each other from time to time and have a chance to check in. Jack was strong and brutally honest and emotional, just like me. He got even stronger in the end. We weren’t best friends by any means, or long time school friends. After 5 or so years we would rarely connect very much. We could see that both of our families were doing well. He posted pictures of his cute son and photos of the food he’d prepare like a professional chef. That’s what happens with friends sometimes… and it’s ok. Life happens and the world spins on. But I didn’t forget that bond we had built and neither did he.

You see over this past year I was struggling privately with my ALS diagnosis. I told no one for many many months. One day I saw a post from Jack and he was in a hospital bed getting tests done. I didn’t know what to think or how to react. At that point I didn’t know that Jack was undergoing cancer treatments. He was brave and so open as he shared his journey, his fight, with his followers out in the open… he battled. As it turned out Jack was dealt a very rare, aggressive cancer.

I finally got the strength to reach out to him by text and see how he was holding up and we once again laughed and we cried. I shared with him that I was also battling a rare and terminal disease. I told him that I don’t know how he did it, sharing so vulnerably to the world? I was terrified of that. He counseled me on the therapeutic and medicinal effects of opening yourself up. And not just the bad stuff. I’d see photos of his smiling face with his beautiful wife and handsome son. He was putting together a cookbook to leave behind with all of his amazing recipes. I marveled at his strength.

Well a few weeks later I decided to share my story with others in the rest of my world. The good, the bad and the ugly. After I wrote out a long post on social media telling the story of my battling an ALS diagnosis, Jack called to check in with me this time. He asked how it felt to let others in and open up about my struggle. He was right, the outpouring of love, compassion and support was overflowing. It was such a nice moment, we joked as only two friends can do. Two good people who have worked so hard to be better people, great dads with bright futures ahead, only now we were dealt really shitty hands in life that were completely out of our control. After sharing some tips and advice to stay strong, we wished each other Godspeed and promised to continue to check in every now and then.

That would be the last time I’d hear from Warrior Jack. Three or four weeks passed, and I didn’t see any social media posts. The other night I saw the the most beautiful sunset from my apartment window. I could feel something greater than myself, something so peaceful wash over me and bring a tear to my eye. I went over to visit Jack’s’ FB page and saw the announcement of his passing. His heroic fight was over. His beautiful family by his side. Jack’s pain and suffering was over. He rests peacefully now, a Warrior. A brother in arms.

The term Warrior now has the meaning I was looking for. This is how I must lead my life. Everyday. Every minute.

Rest in peace, my Warrior friend.

~~~

Great friends, snowy night and hot music!

 

We had such an awesome time at The Capitol Theatre on Saturday night! I was so happy to see so many peeps still came out dispute the cold, rain and snow! It was coming down hard, so I don’t blame those who didn’t venture out. I’ll catch ya next time. Next time for me will be next Sunday night at the Cap for Blues Traveler.
I’d like to give a huge shout out to my dear friends, Matt & Jill who set this all up and flew in from Miami. It was really cool to be there with our daughters. It was their first time at the Cap. Lindsey loved checking out all the Jerry photos and memorabilia in Garcia’s.
The room, half full because of the weather was nice and cozy. The Cap staff is always so great and super accommodating to me in the ADA section. It really makes it a great place for me to get out and see live music with my big ole power-chair. Railroad Earth & Jeff Austin played a fantastic show!

Nights like this I really cherish as my struggles seem to slip away.

Even for just a little while…

 

The old crew back together @ Garcia’s at the Cap!
 L-R: Lauren McCabe, Matt Bohm, Rich Lieberman & Jill Muller-Bohm

Next generation of Live Music lovers!
Lindsey Lieberman & Halley Bohm

Jeremy Jones

 

 

Time flies…

After about a month of non-stop craziness it feels like this week we can finally relax a little bit. Without doubt this has been the busiest time since my diagnosis and it seemed to come with such a flurry. Finally gaining approval from big-insurance, I quickly made my first infusion appointment a week later. The initial treatment being 14 consecutive days of IV infusion of this newly approved drug. While at Stamford Hospital, I decided to get a permanent Port inserted in my upper chest to make these infusions easier in the long run. It was a good move, but it’s still a minor surgical procedure that wasn’t fun. Add in scheduled visits to various doctors, therapists (OT &  PT) and a trip to the ALS Clinic in New Britain, CT and I’ve been running on fumes.

I’m also looking ahead and being proactive in receiving some of the medical equipment that I’ll eventually need for my home sooner or later. Three of these devices were delivered last week and well, I’ll just say it… it’s freakin depressing that I will eventually need the use of these aids and devices. Already having lost the use of my legs has helped get me tougher emotionally. Its also helped that I do have the cool Cadillac of all power-wheelchairs (of course w/ my Dead Head sticker on the back.)

But in the end… there is no real stopping this train as this disease takes away so much in its path, the biggest being one’s independence. As I do everything I can to slow down the train and fight with all my might, this is all a part of the journey. And I’m really trying everything… gov. trials, multiple modalities of therapies, trips to my Connecticut Medical Marijuana Dispensary. I even just made an appointment today to visit Mass General in Boston to see one of very top neuromuscular doctors in the world. #NeverGivingUp

Man… just typing all this out made me exhausted!

So now that I’ve got that off my chest, this week marks another full year with lots accomplished. Thanks to Facebook “memories” I was alerted that two years ago I brought the kids down to Florida to visit family and friends. In these photos I was able to stand on my own two feet, but just outside the frame of those images were my arm-crutches. We had a blast. My daughter Lindsey is in Miami now with her girlfriends, again staying with our life long friends Matt and Jill. I’m so grateful.

Ryan & Lindsey With Dad – Miami 2016
02.10.2016 – Jill, Matt & Rich – Miami Beach

Last year at this very time I was just moving into my awesome new apartment. I cant believe I’ve been here a year! I have full access to everything in a big space, right in downtown Stamford. I can go out and ride around town, hit all the restaurants, stores and parks. I couldn’t do that a year ago. So this has been a huge blessing.

02.08.2017 – Stamford, CT

Most importantly, just about a year or so ago Lauren came back into my life. She’s given up so much to become my full time caregiver. I would be lost without her tireless strength, support and compassion. Sometime soon I’ll probably write more about how this remarkable situation came about. But it’s meant our little family unit is close together once again, and I don’t have to fight this battle everyday all alone. It’s not easy taking care of a pain in the ass like me… she’s an angel!

02.13.2017

Super Sunday!

It’s that time of the year… Super Bowl Sunday is here!

Are you a fan of one of these teams, the commercials or the half-time show? It’s always felt like a holiday to me every year. Give me an ice cold beverage of choice… “and pile on the mash potatoes and an extra chicken wing… I’m having a little bit of everything!”

Personally I’m not a fan of either of these teams but I’m going pull for the Eagles on Sunday. My son is now living in North Philly for college and wants take part in the parades and festivities. Ryan, be chill… you’ll be paying me back for any bail money should it be needed.  

Ryan’s first game joining his dad, the first of many over the years!


My son and I are huge Football fans, spending every single football Sunday since he was a baby either watching or attending NFL games. You see he’s had the misfortunate of being raised a New York Jet fan since birth. It was a curse handed down from my grandfather. I owned season tickets for many many years and I couldn’t wait to take my kid to games, just like my Grandfather used to take me. My grandpas’ seats were in the ice cold upper deck of Shea Stadium where I would see one of my idols, Joe Namath play. I can still remember that amazing hot chocolate from that old thermos.

So today’s blog post is dedicated to all the special times we share with our kids. Memories that will last forever. In honor of the Super Bowl, today’s post goes to my son. These football Sundays have and will always mean so much to me because of our father, son time. My daughter Lindsey and I shared our pastsion for music together, can’t wait to share those memories as well!

oh and don’t feel so bad for Ryan, I also brought him up a Yankee fan… so he knows about winning  championships! 😉

@alssucks  #alssucks

Progress and pain, a lesson learned

I guess I’ve arrived at the point where I don’t really care about what others might be thinking and I’ll be vulnerable to the world by revealing what the new me, the current version of Rich looks like.

Well here ya go… This was me this past Monday, post minor surgery to place a permanent port line from my upper chest which connects to my jugular vein. Not to worry… other than being super sore I’m healing fine. This was an elective surgery which will help me to live more comfortably. My new ALS treatment requires IV infusions for about 20 days out of each month for the rest of my life. So this is what people do if they don’t want to get pricked for access to a vein every time. It will stay under my skin and then all I will have when it heals is a super sexy new scar and I can make up some macho story about it 😉

Stamford Hospital    01/29/2018

But really… if you know me well,  you know I would never have been caught dead posting a pic that I didn’t think made me look presentable on social media. Funny how my perspective has changed over time.

I’ve mentioned that I didn’t share with anyone about my diagnosis (other than my mom, who was with me at The Mayo Clinic) when I was diagnosed. Didn’t share with many for almost a year. I didn’t want anyone to see me and think of me differently. I dreaded having to go into work each day as I was progressing (at the best place to work ever!) using a cane at first. I was mortified and felt so silly. When the cane wasn’t enough, I had to use fore-arm crutches. I had a huge brace on my leg. I was falling down, having to get assistance to get up. What other people thought about me affected me way too much at the time. I couldn’t accept my own predicament. I was angry and scared and thinking “why me!”  What were people thinking? More importantly what were my kids thinking, my family and closest friends. This was a very real struggle for me. When should I tell people I have this incurable disease? How do I tell them? So much to consider! When it came to telling my family I knew it would rock their lives. This was not something to take lightly. I agonized over it, did research, sought wise counsel. In the end when I opened up and through all of the tears, Love poured in!

Before I started to feel the effects of ALS, I took living a “normal” life for granted. The days go by and you just expect the sun to rise each morning and this process to just repeat itself… forever. Until life lands an unexpected blow to the gut that changes everything. Once I came to grips with this, I finally got to acceptance. That’s when I was able to let the love of my people in. Sharing now with my large circle of friends, old and new has taught me a lesson I should have heeded long ago. I’ve had this old Dr Seuss quote on my Facebook profile page since the early days of facebook and on my myspace page (gasp!) before that. Even so, I didn’t quite grasp the power and truth of these wise words. I get it now, so here I am… power wheelchair and all. This is the new me.

Amazing…. I still feel that love pouring over me, from you all!