Multiple Sclerosis / Spoonie Challenges / Writing journey

“Get over it. You’re a Beta now.”

“Get over it.”

“You need to move past this.”

“Accept it.”

“This is the new you, Bob.”

These are the tough but loving—albeit difficult—words I’ve been hearing for the last fourteen months from my family, friends, and doctors. This, after a severe Multiple Sclerosis attack paralyzed the right side of my body, damaged my brain cognitively, and affected my motor skills. I’m to accept this? How could I accept the fact that one day I was a strong, confident alpha male and the next I needed help walking, going up stairs, and was even wetting myself? Many people in my life looked up to me and counted on me at home and at work. I need to get over it? Are you kidding me?! That’s what everyone wants me to do, now that I can no longer drive a car, no longer play basketball in the driveway with my son, or go to the beach with my family. I’m even forced into retirement while watching my wife leave for work every day and return home exhausted.

“Just move on Bob, your wife earns a nice living.”

If only it were this easy.

I asked my wife—who has consistently rooted for me—if she who is so beautiful, could simply turn the page if she woke up and her pretty face was no longer. If her shapely figure was no longer noticeable. “Could you really just move on?”  She had no retort.

I asked my psychiatrist (oh yeah, this experience has driven me straight to the couch), a man who possesses a head of hair that would make George Clooney jealous, “If you wake up bald tomorrow, would you not be depressed? Would you be able to simply turn the page?” He fumbled for something eloquent to say but he could not.

The truth is, I don’t think anyone could have their identity stripped from them overnight and not have any other feelings than anger, self-loathing, depression, and sadness. The beautiful part of aging is most people are lucky enough to age gracefully. Memory, looks, hair, skills, timing, and balance gradually diminish. I was faced with going from the body and mind of a mentally and physically fit 42-year-old to that of a 72-year-old in the course of twenty four hours. I promise you, this is a mind-fuck like no other.

I believe it’s a process getting to know this new person. The old Bob is gone. I’m meeting this new guy for the first time; I’m discovering what I can do and what I can’t.  There are new emotions, which I never felt before. Even things as simple as dealing with the side effects of all the medications I’m on is challenging.  I was always the first person up in the morning. When the rest of the family came downstairs, I had already worked out, read the newspaper, checked emails and social media, and even had breakfast ready. In contrast, now due to the heavy medications I take at bedtime, I am the last person up and feel ashamed when my son comes to my bedroom to kiss me before he leaves for school.

I am 42 years old. Most of my life I felt like an alpha male. Not the alpha male who was the villain in every 80s movie, just one who people gravitated to for leadership and friendship. One who stood up for those who couldn’t.  I enjoyed this role but it wasn’t something I had to manufacture. It came naturally. In high school I was the captain of sports teams even though I had the least talent among the starters. It was my hustle and ability to elevate my teammates that prompted the coaches to bestow me with this title. This alpha mentality followed me into college and then the workplace.

After college I went to work for NBC in New York City. I couldn’t believe I was there. If you can make it there you can make it, anywhere right? I remember my interview with a vice president of marketing. I should have been scared but I wasn’t. I felt like I belonged there. She hired me because of my confidence. It was a low-level marketing job but I learned quickly how the business works. Most people cut their teeth with a small company and work their way up.  Not me. I was a guppy swimming with the sharks. And I loved it. This job led to a copywriter job with SONY Entertainment. I was writing commercials for SONY movies. I was promoted to senior copywriter, then a year later was laid off. That hurt. This was right after 9/11/2001 and was an odd time in NYC as many companies were closing up shop and moving out of the city. It made finding another job difficult. So my then girlfriend who is now my wife said I should consider entering the teaching profession. I reluctantly did out of financial desperation. It was one of the best decisions I’ve ever made.

I became a special education teacher in an urban area. My students were not your typical students. They were emotionally and/or behaviorally disturbed.  Basically at first glance, they were scary. Many were kicked out of previous schools for acts of violence perpetrated against their teachers. Like any other challenge, I thought to myself, I got this. And I did. My bond with these young men became extremely strong. I was their teacher, but I was also their father in many ways. They were hurting something terrible on the inside, which manifested in their poor behavior. As soon as we met we became family. These students would stay with me for three years. These students could sniff out a phony in two seconds. Once they knew I genuinely cared for them, they became model citizens. These were some of the best years in my life, even though these were the same years I was diagnosed with Multiple Sclerosis.

During this stretch I also earned my Master’s degree in School Administration. Fifteen years into my career I was offered a position as a Vice Principal. I had already won Teacher of the Year and the Governor’s Award of Excellence.  This was the next step. But I had been feeling run down. I knew my MS was advancing based on how I felt as well as what was showing up on my biannual MRIs. However, this was the job I had been longing for. The teachers in the building desperately wanted me to be their leader and I had complete confidence I would excel in the position. I looked the part and had the gift of gab. Running a school is half academia and half being a politician. So, this should have been a no brainer (pun-intended) but I turned it down. I agonized over the decision, feeling as if I had blown my big opportunity. I thought I should go back to the Superintendent’s office and say I changed my mind and want the job. Good thing I didn’t. My original instinct was correct because I had a seizure in the classroom a few months later.  That would be my last day as a school teacher.

For the past fourteen months, I’ve been seen by many, many doctors. None have decoded my biggest symptom, which is headaches. The kind that have led me to the ER and require morphine and sometimes the morphine doesn’t even make them go away. I have all the other wonderful hallmarks of MS. Along with the headaches, any given day I wake up to a combo of dizziness, nerve pain in my hand and arm, tingling feet, unable to stand or walk for more than a minute without assistance, chronic fatigue, insomnia, forgetfulness, and inability to drive. There’s more but I’m depressing myself writing them.

BetaAlpha no more. No longer do people envy me. I see the pity in everyone’s eyes when they visit. It’s the hardest part of the moving-on process. It was I who pitied. It was I who solved problems when everyone was frazzled. I was the guy who remained cool when everyone was nervous. I was the hero in the movie, not the victim. Today I feel like a burden to my loved ones. Much like a pride of lions, the dominant male will one day be challenged by a younger and stronger male lion. When the younger lion wins, the older lion either dies trying to maintain control of his pride or must leave with his tail tucked in between his legs, bloodied and humiliated. Confused and alone.

I am not bloodied. I am not alone. I am confused in this new role. I have no choice but to get used to it. I’m sure that I will find my way and regain my confidence in an area that taps into an undiscovered ore deposit in my brain that hasn’t been victimized. I remain hopeful that the medical community will offer better solutions for folks like me, soon. I’m not giving up. Just passing the torch to the younger lions out there.  I had a good run. It’s time to heal physically, but more importantly mentally.


Bob-DeRosaBob DeRosa is a retired public school special education teacher. Prior to teaching, he stumbled into a pretty cool copywriting job working for entertainment conglomerates such as NBC and SONY Entertainment in the city that doesn’t sleep.  Next, he took the logical step in his advertising career and opened an Italian delicatessen and catering business in the suburbs of New Jersey. Why not?  Looking for more stability and thinking of settling down he joined his wife in education and went back to school to be a teacher.  Here he happily served his underprivileged students for fifteen years before retiring due to complications from multiple sclerosis and a brain tumor.

He’s currently working on a children’s holiday book which focuses on acceptance and inclusion.  You can check out his YouTube channel where he uploads weekly cooking demonstrations focusing on meals that benefit anyone with an immune disorder.  Also, follow him on Twitter.  Between doctor appointments Bob spends every chance he gets being silly with the joy of his life, his six-year-old son whose smiling optimism keeps him fighting off MS’s constant onslaught.

 

 

 

2 thoughts on ““Get over it. You’re a Beta now.”

  1. Bob, you should read my entry if only so you’ll know that there are people like me that get it. Disease can change you so you’re the same person you always were, but everything about you is so completely different that, from the inside, you don’t recognize yourself or your world. It’s normal to be angry, frustrated, depressed, and every other negative emotion you can think of. It helps to think of it as a challenge––how am I going to live a life when I’ve lost much of my brain, in my case. How can I get day to day things done when so often I can’t even sit up without exhausting all my resources. I consider all the things that make me lucky––everyone I care about is available online or by phone. I can still read. I can still enjoy things, love people. And yell FUCK YOU at a world that’s taken away from me everything that made me, me. But that’s okay, Bob, because if we weren’t angry, we wouldn’t be essentially normal and healthy. I’m here if you need to talk to someone who gets it. We’ve both lost essential parts of ourselves. Take care.

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  2. Thanks for this, Bob. I know exactly how you feel. Your line about your body basically ageing 30 years in 24 hours really got me. My parents are continually comparing their ageing issues to things I’m dealing with. I have to remind them that I’m 30 years younger! It truly is a mind fuck. Two years into disability, I am (was. I’m still in denial) a teacher too, and still trying to get my mind around it. It sure sounds like you are building quite an impressive new identity, kudos.

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