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Ryan’s NMO Story – NMO is my New Normal

Posted by: The Sumaira Foundation in NMO, Voices of NMO

My name is Ryan. Three years ago, I was living the dream. I was happily married to my best friend, and we have three beautiful and perfectly healthy children.  We all lived together in our new home in Westwood. For the past seventeen years I worked for what is now called Eversource Electric, the largest utility company in Massachusetts. I loved my job and was proud to have worked my way up to Line Crew leader at age 40.   

One rainy, cold March day I was working with a crew in Westwood, minutes away from home. We were just beginning to set a utility pole when the rain came down in buckets. I dashed to the back of my truck to grab my jacket. I reached my hand in quickly and immediately felt a stabbing pain when a metal cleat that was stuck to the sleeve pierced my finger. The pain was excruciating and there was blood everywhere. I knew right away that this was a serious wound. Luckily, in Massachusetts we have a police officer assigned to every job and he was kind enough to drive me to the Norwood Hospital where I got stitches and a TDAP shot.

I shook off the incident as a bad luck experience, vowed to be more careful in the future and went back to work the next day. My coworkers were sympathetic and supportive as usual. I worked with a great bunch of guys. Because I had just gotten the TDAP vaccine, I became convinced this was the cause of my new symptoms, though this has never been proven. I am a person who respects science and advocates for vaccines whenever necessary.

A week after the incident my back began hurting so badly I couldn’t lift anything heavier than my cell phone. A few days later I was in extreme pain and my vision began to fail. That’s when I became alarmed. I quickly made an appointment with an eye specialist who informed me that my optic nerve was swollen and had lesions that needed to be examined at a hospital as soon as possible. He scheduled an MRI the following morning at Beth Israel Hospital in Boston. That night was one I will never forget. I felt like my insides were getting crushed. I couldn’t urinate and my bowels were blocked. I thought I was going to die.

My wife Angie immediately flew into action. She drove me to the nearest hospital in Needham. After a quick assessment, the doctors decided to rush me by ambulance to Beth Israel, where a liter and a half of urine was thankfully drained from my body, mechanically performing the role of my bladder which had shut down entirely. I will never take for granted again the simple act of peeing naturally. But while the relief from this process was immediate, the fear of losing my life; the worry about losing control of my bodily functions, my bladder, my eyesight, was just beginning…

I spent the next ten days as a patient at Beth Israel Hospital. On day one I had the MRI, a cold, claustrophobic, noisy, and frightening 3 ½  hour experience that added to my grief and general discomfort. Soon afterwards, I heard my team of doctors diagnosing my illness as MS which stunned and confused me.

How could this be happening?

I was young and healthy. I have played sports and exercised all my life. I always ate healthy, and had once been a physical trainer. Days later, while lying in my hospital bed wondering how to deal with juggling a disease as serious as MS, while maintaining my responsibilities as a husband, father, and employee, the team of doctors entered my room to inform me that I was suffering not from MS but a disease called NMO, neuromyelitis optica, a term I had never heard before but which would now become my greatest fear. 

The doctor told me the chances of getting NMO was like hitting the power ball. Lucky me. The good news was that once correctly diagnosed, my doctors were able to treat me with intravenous Solumedrol, a steroid infusion which restored my eyesight and made me a little more comfortable. This gave me and my family a little hope for the future. As it turned out, this was a trip to fool’s paradise. Everyone knows that the side effects of steroid drugs can include fits of rage and seismic mood swings and I don’t advocate its use if it can be avoided. The doctors then started me on Rituximab to suppress my immune system, helping to avoid future relapses. 

The first two years with NMO was a blur. I needed to take a leave of absence from my job. I was taking more pills than I ever had before and remembering how many to take and when became a problem. I was on multiple painkillers, pills for spasticity, pills for insomnia and pills for anxiety, among others. My wife and kids had to alter their activities and their relationship with me. Having me home 24/7 had to be as hard on them as it was on me. Feeling sick and depending on others for help made me cranky. I had frequent flare ups, forcing my wife to drop what she was doing to drive me back to the hospital for more steroid treatments, the only thing that seemed to bring any lasting relief.  

Although my eyesight problem never returned, the crushing, squeezing pain in my hips continued. My feet began to hurt and sometimes both of my legs would go numb. I had to use a cane to get around. The daily trips to doctors’ appointments, physical therapy, infusion therapy, Botox injections in my neck to reduce the amount and severity of bodily shocks that I endured almost daily, was taking its toll on my body, my mind and spirit.

Reluctantly, I realized NMO was now my new NORMAL.  

This realization that I was stricken with a disease that was not going away any time soon was a turning point in my life. Someone once said that “if you don’t like something about your life, change it. If you can’t change it, change the way you think about it.” This is what I planned to do. 

NMO is a terrible disease and I wish to God I never experienced it. But now I have arrived at a place where I can accept my illness for what it is. Fortunately, my company stood by me from the very beginning. They have continued to support my family financially for the entire time I have been out of work. I am sincerely grateful for their love and generosity and if possible, I would like to return to work someday, of course in a different less physically demanding position. My family also adapted to having dad around all the time. The quality time I get to spend with my three kids is my silver lining. My wife found a job in Boston which made up for lost income and quite frankly, probably saved our marriage.  

Now my life has become one of rehabilitation. I changed to a vegetarian diet to keep my weight down. Although long walks or rigorous exercise is out of the question at the present time, I do manage to walk my German Shepherd, Cassius, twice a day. Sleeping is still a problem, but I try to stay positive by listening to tapes and reading inspirational books. Now, because of the Coronavirus, my kids are home every day.  This has been another obstacle on my road to recovery. The good news is my kids are with me all day every day. The bad news is my kids are with me all day every day. Add homeschooling your kids without teacher training to the list of recent anxieties. Once again, I am trying to change the way I think about it.  

Finally, I want to thank my wife Angela; my children, Collin, Ava, and Alex for their continued love and support, the wonderful doctors and nurses at Beth Israel and Mass General Brigham for their care and professionalism, my coworkers for their love and generosity, my siblings and my father for listening to my endless tale of woes.  Bless you all for your love and patience.  

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