There are some anniversaries you dread - certain dates each year that remind you of something you wish you could forget. I combine the day I was initially diagnosed with Multiple Sclerosis with the day that diagnosis was confirmed into one long anniversary. Then I add the date I started my first MS treatment. It equals two months of depression from May to the end of June each year, but this year was worse than usual. This was the 10th anniversary and it made me take a good look at my life.
Here’s how it began...
My problems began in 2010. After shoveling snow one day, I noticed my legs still felt cold - ice cold - a week later. The legs were cold during and after hot showers; they were cold when covered with heavy blankets; and they were even cold inside a sauna at the gym. I started seeing a neurologist and having medical tests conducted but the results were inconclusive. After two years of tests, I gave up. My legs remained frozen for most of the year and got to the point where I didn’t even notice the coldness until it was a period when the cold went away. Nobody could tell things were going on inside me. I was still able to run five miles a day. I remember telling people I was the healthiest unhealthy person they’d ever meet.
And then one day five years later, everything changed. My legs were no longer cold, but incredibly stiff - to the point where I could barely walk 10 feet. My wife noticed me staggering as I walked our dog. I didn’t know what was going on, but knew it wasn’t good.
The period between the beginning of May and the end of June in 2015 is like a blur to me. I left my general doctor’s office with the thought that I might have MS (the doctor was fairly sure of it) and nearly crashed my car getting back on to the highway. I had problems with my peripheral vision and control of my feet. That would be the last time I ever drove in public.
I knew Gabor Barabas at New Jersey Repertory Company was a child neurologist and told him that I likely had MS. I explained how I didn’t want to go back to the same neurologist again and asked, “Who would you go to if this was happening to you?”
He recommended Dr. Noah Gilson, a colleague and friend of his. As luck would have it, Gilson is also an accomplished photographer. This would be the start of the arts literally saving my life.
The last few weeks of May 2015 included a series of MRIs and a spinal tap (probably one of the most painful moments in my life). The diagnosis was officially confirmed the day before my birthday in June.
I was diagnosed with Secondary Progressive Multiple Sclerosis because enough damage occurred in the five years since I first began going through tests. Essentially, this means I have MS symptoms that are permanent and can get progressively worse if not treated. My immune system constantly attacks healthy cells. There are lesions in my brain and on my spine where areas have become scarred. Multiple Sclerosis literally means “many scars.” The end of June is also the anniversary of starting my first MS drug treatment, Tysabri. It is a powerful drug that suppresses the immune system with the possibility of several scary side effects, including fatal ones. One thing you quickly learn when you are diagnosed with an incurable disease is how brave you are. Risks - even extreme risks - become part of your daily life.
I had started New Jersey Stage as a business less than a year earlier. My original plan was to create a monthly digital magazine about the arts that would be used to launch a monthly digital magazine about wineries in the Northeast. That’s why the company’s official name is Wine Time Media, LLC. I love wine and noticed how wineries along the East Coast were winning competitions around the world, but getting little press about it. Between the quality and the way wineries were all starting to host events and regular concerts, I envisioned a digital magazine that would make them come alive and encourage people to visit and try their wines. But the diagnosis changed those plans and instantly changed the lives of my wife and me forever.
My world became a lot smaller. Driving became too dangerous for me because I no longer had full control of my legs. I’ve spent much of the last decade unable to feel the ground when I walk and am unable to feel a car’s pedals. I thought about converting my car to utilize hand controls, but MS gave me a hypersensitive peripheral vision issue so that option was too dangerous as well.
I had many decisions to make quickly. The wine magazine was shelved and the concept behind New Jersey Stage moved more in the direction of previewing events and feature articles rather than reviewing shows or covering events. New Jersey Stage still has several freelancers who provide show reviews throughout the year, but reviews became much less of the focus.
My wife was a rock. She probably handled the medical news better than I did. My mind was racing around a million thoughts each day. I knew I could never hold another office job outside of my home. In addition to being unable to drive, I have to battle through moments of utter fatigue and pain each day - taking breaks and working odd hours. So, we would need to rely on her salary. She had to take me to doctor appointments and infusions. My job was to bring in as much money as I could while fighting this disease - doing everything I could to prevent needing a wheelchair or suffer cognitive losses. And to try to avoid thinking about having an incurable disease every single day - something that is truly difficult to avoid, especially in the early years. I wanted to be here for my wife. I hoped we could have as normal a life as possible, even though I knew that would be extremely difficult.
Somehow the digital magazine continued month after month. I wrote most of the articles and did all of the graphic design, website, and social media. My wife served as editor which was a big help. I’m not a sales person, but managed to do enough to bring in some money each year. My goal was always to have the product sell itself - just keep growing the audience and keep the ad rates affordable for arts organizations. The hard part is that it isn’t easy “proving” what a website’s audience is and I sometimes feel people judge New Jersey Stage’s audience by our ad rates compared to those of other sites. The truth is I have had several arts organizations advertise with New Jersey Stage that I do not think advertise anywhere else because they can’t afford it. Those organizations are why I haven’t raised our rates and likely won’t anytime soon. I know what it’s like to spend a lot of money on ads when money is tight. It’s important to have affordable options.
My wife and I have been a team since we met and fell in love as college freshmen. She was an actress growing up and still loves the theatre. Our first kiss came as she helped me practice my role as Sebastian in Shakespeare’s Twelfth Night. I wouldn’t have been able to make it through the production without her help. Her background in the arts helped her believe in what I was trying to accomplish with New Jersey Stage. One of the worst things I learned about MS early on is that diseases like this have a tendency to break up marriages. Within a few months of being treated with infusions, I could understand why. I made a decision to fight every day to be with her and to be able to go with her to plays and go on vacations together. My main goal was to be as little of a burden as I could...
But there was the money issue. I didn’t mind having her being the main bread winner as a university professor, but I didn’t want to be a charity case either. Thankfully, I found that covering the arts gave me a purpose - another reason to get out of bed each day. I made the decision to keep my diagnosis private and didn’t mention it publicly until many years later.
Once a month, for over three years, my wife and I would go to Monmouth Medical Hospital in Long Branch and spend about three hours together in the cancer ward as I would be infused with Tysabri. Most of the time, things went very smoothly and the nurses were always very good. I would go to the hospital, check in, be asked if I had an Advance Directive (nothing tells you you’re taking a scary drug like hearing those two words each month), and wait in the waiting room for the drug to be ready. But there was one day when the drug was late in being delivered and I hadn’t eaten before leaving for the hospital. The combination meant the infusion started much later than normal. Almost immediately after the infusion began I muttered “something’s wrong...” to my wife and then passed out as the room went black to me.
When I woke up, I was surrounded by a group of nurses, doctors, and medical students. It was one of the scariest moments of my life. My neurologist had called the drug manufacturer while I was out and the decision was made to stop the treatment and restart in four weeks.
There’s no way to describe the feeling one has when their body is dependent on a infusion and then doesn’t have it. My body was used to feeling “empty” of the drug in the days proceeding an infusion. I’d feel drained and heavily fatigued. After the infusion, I’d feel like Superman for the first 2-3 days as the drug kicked in to block my out of control immune system. After missing the treatment, the next few weeks were rough on several levels. I worried that my body might get more permanent damage without it. Thankfully, things worked out and I got back on schedule.
In 2019, my neurologist said it was time to change treatments. I had gone through three and a half years of Tysabri infusions, but it was no longer working as well for me. There were new lesions and scars. Since the plan was always to move to another treatment someday, my wife and I were somewhat prepared for the news. The decision was made to go with Lemtrada, a powerful drug that is administered like a chemo treatment. It completely destroys the immune system and resets it over several months of recovery.
That’s when I set up the Advance Directive. I always told myself that I would get one when the second treatment began. After the first round of treatments in year one, my body was extremely weak because my immune system had been destroyed completely. I was very susceptible to sickness early on, so I basically became a hermit for the first few months. And then once I started going out into the world, it was not long before the second round.
Ironically, after I got through the second round of Lemtrada in January of 2020 and was ready to start going out again, COVID hit and shut everything down. I had been cooped up inside for the better part of two years and now there was no place to go!
I’m proud that the digital magazine kept going through three and a half years of Tysabri treatments and two years of Lemtrada. We even published seven issues when all shows were either canceled or performed online due to the pandemic. The digital magazine wrapped up with issue 75 after six years and 999 stories! We were a digital publication long before most people had ever heard of them - one that came alive with music videos and film trailers. Today, many venues use digital publications for their programs. Guess it was ahead of its time. That’s always been a problem of mine.
During the infusion years, I was able to talk with the singer-songwriter Victoria Williams whose diagnosis of MS led to the creation of the Sweet Relief Musicians Fund. A compilation album for the fund was one of the first times I had ever heard of MS. Watching Martin Sheen portray President Bartlet on The West Wing was the other. That interview with Victoria Williams was difficult for me, but gave me hope as well.
One of the moments I’m most grateful for was the chance to have a long talk with Mike Peters of The Alarm. Mike, who recently passed away, had fought cancer for decades. I very rarely brought up my MS during interviews, but this particular conversation lent itself to the admission. With all of the experimental drugs Mike had taken over the years, I was fairly sure he might have taken the original drug for leukemia that was tweaked to create Lemtrada. I was glad to be able to tell him directly that his fight inspired me. I used to listen to music by The Alarm in preparation for the treatments and while at the hospital. His decades of fighting and his songs are among the biggest reasons I made it through this period.
This article is to mark an anniversary that feels significant to me. After diagnosis, my doctor told me, “MS is not a death sentence,” and he was right. It’s the beginning of a battle that will be a daily fight. I’m writing this to take a look back at how much I’ve accomplished in the past decade, to explain the difficulties of having an “invisible disease,” and to offer ideas on how the arts can improve accessibility for those of us fighting such issues. Maybe even give hope to someone else who gets the news they have an incurable disease... Mostly it is to show how connected my fight is to the arts and to thank my wife for giving me this opportunity.
I spent years hiding the fact I had MS because I didn’t want to lose advertisers or potential advertisers because of it. Now that it’s been 10 years since diagnosis, my feelings are different. I’ve proven that New Jersey Stage can continue and thrive with me having this disease. I’m proud to wear it as a badge of honor now. In addition to publishing the majority of the 75 digital magazines after my diagnosis (never skipping a single month), the website published over 34,000 articles since that time. I’m proof that businesses shouldn’t discount people because they have medical conditions or disabilities. You might be hiring a person like me - someone who has a chip on their shoulder and wants to prove they belong.
Looking back and proud of the past decade.
My life is constantly in motion and I rarely take the time to look back at how this journey has gone. I still wake with the fear of things going bad, which is why I spend at least 30 minutes each day exercising (walking or riding the stationary bike for 2-3 miles), 30 minutes on Duolingo learning a foreign language, and 30 minutes playing NY Times puzzles. The goal is to keep my legs as strong as they can be and to keep my mind as sharp as it can be. There are days when my legs feel good and days when it’s hard to walk at all. There are days with a little pain and days with an awful lot of pain, but I’m still fighting each day as hard as I did in the beginning. I know there are no guarantees and I could be needing a wheelchair tomorrow, but I’m determined to fight.
After my morning routine, the rest of the day is largely spent working on the website - publishing articles, writing articles, writing the code for the website, managing the social media pages, thinking of new additions to the site, improving things, and taking breaks for fatigue, stretching, etc. I try to do a little sales work each week, but most of our advertisers still come to us rather than via my efforts. Outside of the site my life revolves around watching sports, listening to music, and watching a movie or tv show at home with my wife. Rinse and repeat, day after day, week after week, month after month, year after year. It is what it is. MS is all about managing your symptoms as well as you can.
One of the best decisions I made was to write the website’s code by myself. When the site launched, it seemed like every newspaper website used WordPress. I wanted more control than that software gave me. I run New Jersey Stage old school - it’s code actually written in a text editor. As it turned out, tackling coding issues and fixing problems has helped my brain fight MS more than just about anything else. It may not be the best looking website, but it serves a purpose. And I’m able to create and do whatever I want with it. There have been many changes over the years from search engine algorithms to new social media sites and the increased usage of artificial intelligence. Even website coding languages have changed over the years. Keeping current with everything while publishing 10-15 articles a day is exactly the challenge I need.
I’m proud of what New Jersey Stage has become. One of my earliest goals was to reach one million unique visitors in a year. In terms of the Internet, that’s not a very big number. But when you are covering a niche like the arts in a single area, having one million unique visitors in a year feels pretty good. The goal now is to aim for two million unique visitors.
I’m grateful for our columnists Danny Coleman, Bob Makin, and Lazlo - three guys I’ve known for a long-time who write weekly columns for the site. We’ve got a great relationship with Al Nigrin and the New Jersey Film Festival. We get regular contributions from John Posada, Chris Paul, and Julie Hoffman throughout the year. Each week, we syndicate works by Tris McCall, Jersey Arts, and Eric Hillis, a film critic who lives in Ireland that was a big part of the digital magazine. The writer/photographer duo known as Spotlight Central have contributed over 750 articles in the last decade! Add in work by Karen Nowosad, Kat Falcey, and others - it’s a nice, little arts community.
When you have a disease like MS it’s easy to feel worthless. You are different than the person you were before diagnosis. The life you envisioned has been taken away from you and you’ve got to create a new life for yourself. That’s easier to say than it is to accept.
Two years ago, I was nominated by Pushcart Players to receive an Award of Excellence at the 2024 New Jersey Theatre Alliance Curtain Call event. I've won awards for my writing in the past (pre-MS), but being honored for my work in the arts was special - especially since it was a complete surprise. It's nice to know that there are people who appreciate the site and the work I do for it. It gave me a much needed boost of confidence. I was proud to receive the award with my wife beside me.
Why I can’t always go to shows...
I wanted to give people an idea of the difficulties I have to attend shows, while pointing out accessibility issues. New Jersey Stage receives invites from venues, theatres, arts organizations, municipalities, and artists every day to cover events. I would love to be able to cover them, but I have to pick and choose my battles.
I’m fortunate I don’t have many of the issues that people with MS who I’ve met online suffer each day. But we all have our own weird stuff we have to deal with. For me, simply being a passenger in a car is an experience somewhat between a roller coaster and a torture chamber. Every turn is painful and makes my body feel like it’s in multiple places at one time. Where I am at the beginning of a long turn doesn’t feel the same as where I am at the end. If you’re a fan of Star Trek, it’s kind of like what I imagine the feeling of being beamed up in the early days must have felt like. You get through it, but wonder if every cell is back in the right place. So, simply getting to a venue is a challenge. That’s something I just have to fight on through. Some days the pain is so much that I just can’t go out, but if I’m scheduled to be somewhere I try to make it.
Unfortunately, my symptoms hit harder at night. Things get worse for me as soon as the sun sets. This makes going out to most shows a challenge. It’s why my wife and I are more likely to attend matinee performances rather than the opening night at a theatre.
Difficult standing - Venues may be able to help people who have difficulty standing. It’s probably one of the least known aspects of “invisible diseases.” Some of us simply cannot stand for very long at all. One of the things we learned at the beginning of life with MS was the “spoon theory.” Each spoon is a measurement of energy, expended through effort. People with a disease like MS start with around 10 spoons per day. Many of the things we do each day are worth a spoon, leaving fewer and fewer spoons (or energy) for the rest of the day. So I must choose what actions are “spoon worthy” and which are not. Using too many spoons one day can affect the way I feel the next day as well. It’s often referred to as the “MS tax.”
Standing in line to get into a venue or waiting for the doors to be opened takes away a spoon or two depending on how long the wait is. Wheelchair access is great and is absolutely necessary, but venues should consider what else can be done for accessibility. One suggestion is to model door openings for a show as airlines do. When they first open the gate for boarding in an airport, they allow anyone who has a wheelchair or trouble walking or standing to go first. You would be AMAZED at how much this helps people like me and how GRATEFUL we are for it. Considering that a venue will likely not have many who fall into this category, simply allowing 5-10 minutes for people with these issues to get to their seats first should not be too difficult or upset others that much.
One great option for bars who present concerts is to offer reserved bar stool space at the bar. I first encountered this at Tim McLoone's Supper Club in Asbury Park and I think it's a terrific idea. If someone purchases a seat at the bar, the venue not only gets the revenue from the ticket but will most likely get a nice bar tab as well. It’s a brilliant use of space and a great way for people to attend shows when they’re going out solo. It’s also a great way for me to know I have somewhere to sit. I’m willing to pay for that.
I love venues like The Stone Pony who offer a dedicated area for the disabled for both indoor and outdoor shows. They monitor the area to make sure people who need it have space there. I’ve found myself seeing more shows there than anywhere else simply because I know I can get a seat.
People facing accessibility issues remember venues where they feel comfortable and are more likely to return with a good experience. They will also remember the venues where the opposite is true.
And, as with the majority of folks with MS, heat is my enemy. I grew up playing soccer and going to the beach in the summer. Now running has turned into walking with a cane and the beach is avoided until the fall. I love the beach so much I moved to Belmar right after college and still live three blocks from the ocean. It’s maddening to be so close, but I need to wait until temperatures are under 75 degrees to be on the boardwalk. The days of attending summer festivals or outdoor shows for me are long gone. Heat paralyzes my body - thankfully, it’s a temporary feeling that clears after time and I cool down. But it’s an incredibly scary feeling. I can practically feel my brain start to cook. Even crowded venues are a problem for me in the summer. They are just too hot.
The weather also affects me - rain, especially. During recent weeks when we have periods of 3-4 straight days of rain are like a hundred knives stabbing me. Lately it seems we are having more and more days like that.
I love livestreaming...
The pandemic led us to the world of livestreaming and it’s something I hope continues. There are musicians who still offer virtual solo performances online, but many venues stopped offering them once the pandemic ended. I think it’s a great way for venues to earn some extra revenue. Organizations like The Folk Project still offer them for their performances. Likewise, I’m rooting for The League of Live Stream Theater which has offered livestreams of wonderful theatre companies around the world and is trying to make the practice more widespread. And I love that the New Jersey Film Festival still runs its festival as a hybrid with both in-theater screenings and videos available on demand for a day.
There are so many reasons to offer livestreaming options. For the disabled, this is a great way to see the arts when you cannot drive or when your disability is one that makes it difficult to either get to or enjoy a show in a venue. It’s also great for the elderly or for fans outside the area. Think of how many people might be interested in seeing a show from outside the area? Fans, friends, and family members might want to tune in. It’s an untapped market. As a theatre reviewer, I can only imagine how many extra reviews I could do if a livestream was available for the first few days of a show or a recorded version on demand was offered.
And, finally, I am so grateful for my wife...
Sherry understands what I go through each day and knows that there are aspects of MS that I wish I could control but cannot. There wouldn’t be a New Jersey Stage without her. In fact, I probably wouldn’t be here today without her. I’m just sorry that she has to go through this. I always feel like I’m holding her back. I don’t know how I ever got so lucky as to meet someone as wonderful as her, but when I count my blessings she is always at the top of the list.
This is my story of the last decade. A look behind the curtain at a man covering the arts from a sunroom in Belmar. A guy who went through over 60 infusions, has taken more than 33,000 pills, two scary drugs, and suffered one major side effect (losing my thyroid) but is still fighting each day. I never fully understood what the Yankees’ legend Lou Gehrig meant when he said the famous lines in his farewell speech. Now that I fight MS everyday, I too feel like the luckiest man alive.
** Edited by Sherry Wien
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