A funny thing happened…

Sometimes life is funny, and sometimes you wait a long time for the punchline. Sometimes you get the joke, and sometimes you’re lost. They say comedy is subjective, and you’ll even hear someone say you’ll see the funny in it. But sometimes life isn’t funny ha-ha, it can be funny strange, funny weird, or just NOT funny at all.

I live in Northern California. I am a wife, a mother, a daughter, a friend, a former journalist, a former marketing manager, a recovering elementary school teacher, and a stand-up comedian. And I have always been an amateur shuffler until I went pro on October 15, 2019.

What is a shuffler you ask? I have been a shuffler all my life really. Shuffling education, career, relationships, health, wealth (and lack thereof), wants, needs, emotions, you name it. I work hard for everything I have and what I’ve done, and I’m proud of that, but it always seemed that I was shuffling this way and that to get this and that.

I met my wonderful husband and got married in 2008, two weeks before my 38th birthday. We started to shuffle right away because the clock is ticking, and we wanted a family. We immediately tried to have a child because, hello, I was 38. That was the fun part. After seven miscarriages – the not funny at all part — we were given the greatest miracle ever… my beautiful son! A new shuffle started. Shuffling through breast feeding, poop, pee, diapers, late nights, early mornings, no sleep, snuggles, fun times, and lots of love. This was life as I knew it.

Since I was older and most likely not able to have more children (although we tried… another fun part), and I was enjoying being a parent, I took leave from teaching to be the ultimate teacher… a full-time mommy! I still did stand-up when I wasn’t exhausted and worked as a manager at a comedy club to earn a little extra cash and keep the funny in my life. I was 43, a new mom, and exhausted, so it didn’t surprise me too much when I had a hard time reading my notes in the darkness of comedy clubs and noticed a blurry spot in my left eye. I was getting older and getting little to no sleep with a newborn around, so I figured it was nature telling me I needed glasses. Turns out it was telling me that and a bit more, but I wouldn’t find that out for about seven years. So begins the not funny at all shuffle.

I went to the optometrist… ophthalmologist… I never remember which one… Let’s just say I went to the eye doctor. They told me I needed to wear glasses for reading and that I had a wrinkle on the back of my eye that they needed to keep an eye on (pun intended). “Do they make Oil of Olay for eyes?” I asked. I know, kind of hacky funny. But comedy has always been my default defense mechanism.

Then in 2014, when my son was only 16 months old, I fell and broke my left ankle, tore all ligaments and tendons, too. I fell at the comedy club — not funny yet — at the beginning of a staff meeting when I stood on a chair to turn on a light. Give it up to the manager for not following OSHA safety rules and using a stepladder! I do not remember the fall; I do remember hitting the ground and knowing I had broken my ankle. All I could think was, “How am I going to take care of my baby?” Over and over again, I wailed.

Thankfully, I was in bar, so there was ice to put on my ankle and help with the pain and swelling. The staff tried to keep me in good spirits (literally) by offering me shots of anything alcoholic and a cigarette to get me through until the paramedics came. Looking back, I should have taken them up on it. I got to the hospital via ambulance. (Thank you handsome EMT Kevin for keeping my heart beating and spirits up!)

I called my husband who was home with our son and my mom who met me in the emergency room. The next morning, I was in surgery getting a metal plate with 10 screws (!) inserted in my leg and had to figure out how my husband and I were going to care for our son, work, and just survive if I could not walk. How could we know we were prepping for the future? I wondered when the shuffle would be funny again.

After four months of slowly allowing my ankle to heal by keeping weight off of it, I finally started to walk. But I had trouble, pain, and something just wasn’t right. A year passed, and my left foot began to give me issues. After many appointments with my family doctor, my first podiatrist, then my second podiatrist, I found out I had an anterior tibial tendon tear in my left foot. Not funny. That led to surgery number two, more physical rehab, and an allergic reaction for the first time to amoxicillin. And did I mention they took the stitches out too soon so my wound “dehisced” (a new term I learned meaning they took the fucking stiches out too soon and left me with an open wound so I couldn’t wear socks or shoes or walk much). Re-shuffle damn it, and let’s deal again.

As I healed and began to get back to life, I just seemed to be a bit off, a bit crooked, and really shaky. I couldn’t walk very fast or very far. It was hard for me to play with my son on the ground because I couldn’t get up. I couldn’t run even though I’d done a marathon in 2005. I had a hard time dancing, and man, could I dance! I was known for being a good dancer my whole life, from ballet to hip hop. I would walk my son to school at 8am looking like I had done shots of tequila instead of espresso that morning. I couldn’t stand for long periods of time. I was constantly in pain, constantly tired, couldn’t hold my pee, couldn’t walk straight, and freaking out on the inside while trying to act like everything was fine on the outside. “Just keep smiling,” I thought. “The punchline is coming soon… I hope.”

Anytime someone would notice me wobbling, stumbling, walking like a drunk, or lagging behind, I would say, “I broke my ankle a little while ago.” I repeated this mantra for five years. The excuse had run its course, and I was struggling in the shuffle. It was time to figure this out. Time for the doctor shuffle.

I went to every doctor you could imagine. I was given blood tests, CT scans, x-rays, medicine, orthotics, new shoes, physical therapy, proprioception (don’t ask), and vestibular therapy, but my condition did not improve. Although she and I were not aware, my general practitioner was headed in the right direction — ever so slowly — with the battery of tests she was giving me. I would see the eye doctor every year. I went up one level in readers, but my eyesight was still an issue. I even had a doctor tell me it could be perimenopause. Are you fucking serious? Last time I checked, my ability to walk had nothing to do with my uterus. (Btw, this was not an OBGYN.) My podiatrist said it might be neuropathy. He asked if I was a smoker (quit years prior) or a diabetic (had the tests…NO!), then threw up his hands and said, “I have no idea.”

I went home and cried. It was hard to believe that no one could help me get to the bottom of this mystery, but I was not giving up. I knew something was wrong, and I hoped someone would figure it out. I decided to shuffle to podiatrist number three. She watched me walk back and forth and instantly came to the conclusion that this was not a functional issue. It was a neurological issue. So, she referred me to a neurologist. (I know, this is starting to sound like the “Officer Krupke” routine from West Side Story.) At last, someone could see what I felt and… wait, did she say a neurologist? Why am I seeing a neurologist? I teared up and realized that those who said it was all in my head could be right. This for sure was not funny ha-ha or funny strange. This was funny scary.

My husband and I went to the first neurologist, a general neurologist who did some initial tests. I was so scared that I figured when he asked me to walk, I would try my hardest to keep my gait intact. “What the hell, Tina? You can’t do that on the daily and now all of a sudden you think you have magical powers to conjure up normalcy?” It didn’t work, of course. Then he made me stand feet together, feet apart, eyes open, eyes closed, over and over. It reminded me of going to Catholic mass — stand, sit, kneel, stand, sit, kneel, pray. When he ran a dull metal instrument along the bottom of my foot and my foot went up, his eyes said it all. My reaction to the test made it clearer: the Babinski Reflex… time to reshuffle again.

I had an MRI — oh, sorry, three MRIs: skull, cervical (neck), and thoracic (spine) — to see what was going on. If you’ve never been in an MRI tube, let me give you the Reader’s Digest: It’s like being wide awake in a metal coffin in the middle of a firing range. They lay you on a metal slab with ear plugs, unable to move for hours. If you move, the whole process starts over again, so I kept my mind occupied by reminding my body not to fucking move, freak out, or give in to my claustrophobia (Did I mention that?). They tell you over and over again to just relax. Really? I guess that was their way of trying to be funny. Stick to your day job, doc!

When the MRI results came back, the neurologist said the words that have been ringing in my head ever since, words I’m not likely to forget: “I’m going to refer you to a neurological specialist who is the best because I feel you may have multiple sclerosis.” My husband squeezed my hand, but I crumbled. All I wanted to do was pick up my son and hold him, forever. The Myelin Shuffle had begun.

Funny thing is, I didn’t know that I’d been shuffling along with messed up road maps in my body. To explain, myelin is an insulating layer or sheath that forms around nerves, including those in the brain and spinal cord. It’s made up of protein and fatty substances. The myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. And mine was damaged, broken. Welcome to Multiple Sclerosis, welcome to MS, and welcome to the Myelin Shuffle.

I met my MS neurologist, and he went right to work. I was relieved to get a full examination after all the drive-bys with previous doctors who I started to refer to as the “Mr. Magoo Crew”. I was told I needed three more MRIs with their super-duper mega machine. For those keeping score at home, that makes six MRIs in a month. You’d think it would get easier — let me rip the band aid off for you — it doesn’t.

The day after the 13th anniversary of my first date with my husband — yes, we are those people who celebrate and remember everything — we sat down and held our breath. The doctor did not waste any time, which I appreciated. “You have MS.” Once again, my husband squeezed my hand, but this time, I replaced crumbling with cursing. “Fuck, fuck, fuck, fuck…” I must’ve said it about 7 to 10 times. I was angry. I was upset. I was scared. I was diagnosed. I apologized for my language. The neurologist smiled and said he had heard worse. “I can work with this guy,” I thought. Anyone who allows me to be me is a keeper. Just ask my husband!

To be more specific, I have Relapsing Remitting Multiple Sclerosis, or RRMS. My issues were not because I had gained weight, not because I was out of shape (although it didn’t help), not because I was old, not because I was drunk, and for sure not because of menopause (I still shake my head when I say this). It was MS. It is real, it has a name, it explains a lot, it will never go away, and it’s still not funny.

In case you’re wondering, there is no cure for MS. I’m used to overcoming obstacles, so that was a difficult pill to swallow. (Did I mention the seven miscarriages and our son who was conceived naturally?) But the good news is that I can survive and even thrive despite the disease. And I will.

It’s taken more than a year since my diagnosis to feel comfortable sharing this story with others. Many of my friends and even some family members will find this out for the first time when they read this blog. I could not and did not want to tell people. It took a long time to wrap my brain around the reality that I was not talking about someone else… I was talking about me. It is a process. It is a shuffle.

With COVID landing shortly after my diagnosis and throwing us into shelter-in-place and social distancing, I didn’t want to tell people via social media, telephone, text, or email. I reached out to family, the friends who did know, friends with MS, strangers with MS, and other advocates, and I realized I needed to get my voice out there.

It’s still amazing to me just how little most of us — including me — really know about Multiple Sclerosis. With strength from my husband and son, I am here to talk about, learn about, educate about, cry about, laugh about, and hopefully help about Multiple Sclerosis. (By the way, my son understands that mommy has MS, and on the days we call “bad balance days,” he always holds my hand to help me walk to my destination. Mommy’s sweet boy!)

So put on your dancing shoes, grab your sense of humor, and get ready to do the Myelin Shuffle. I’m your host, Tina Gallo.