My MS Story

Hello friends! My name is Kenny Schied. First and foremost, I would like to thank MS4MS for allowing me to tell my story and my journey through life with Multiple Sclerosis (MS). Although I was officially diagnosed with MS in April, 2013, I first showed symptoms as young as age twelve in my hometown of Chicago, Illinois in the year 1991.

As memory serves me, it started as a loss of sensation in my left foot (pins and needles). I began to experience disorientation, loss of balance while walking and slurred speech. Concerned, my parents had me evaluated by my primary care pediatrician for a period of time. As my symptoms worsened, testing and lab work led me to a point where CAT scans and MRIs were deemed necessary. An unknown mass was found on my brain, which was determined to be a benign tumor.

Over the course of several months, all feeling returned to my foot and I again began to walk and talk “normally.” Although perplexed that the mass was shrinking rather than enlarging, the team of physicians at Children’s Memorial Hospital in Chicago maintained that it was in fact a tumor and I was scheduled to have brain surgery to have it removed. Upon being fitted for a helmet designed to keep my head in place as the surgeons removed the tumor, a visiting surgeon from South America was on site for a seminar and he was shown my charts and lab work.

After much thought and discussion, the surgeon theorized that the mass could possibly have been remnants from a rare virus that he had recently seen in his country. As a result, my parents took the medical team’s advice to monitor my symptoms and follow up regularly. Over the next few months, the mass had shrunken to the point that it resembled scar tissue and in my case was considered to be “a miracle.” I became physically stronger than ever and the “tumor” was now gone.

Approximately three years later (at the age of fifteen), I began to experience facial drooping and a spastic murmur below my right eye. Although the symptoms were mild, I returned to my pediatrician for labs and body scanning. Thankfully, no new masses appeared on my brain, my facial drooping returned to normal and the spasticity subsided. This time, the prognosis was Bell’s Palsy, (a temporary paralysis), however my physician advised that if my symptoms returned it would be wise to test for Multiple Sclerosis.

Fortunately, my health remained relatively normal for many years to follow. I maintained a healthy lifestyle and worked out regularly. In June, 2002, shortly after moving to Tucson, Arizona, I began working as a Corrections Officer for the Pima County Sheriff’s Department. In May, 2005, my then wife and I welcomed the first of our three beautiful children. In May, 2006, I was hired as a Correctional Officer with the Federal Bureau of Prisons, a career that I promoted in rather quickly. I was actively involved as a member of the Special Operations Response Team (S.O.R.T.) beginning in May, 2008. Although I had no tactical experience and my physical fitness was mediocre at best, I took on Assistant Team Leader in early 2012.

In April, 2013, I was offered a promotion to Lieutenant (supervisor), an opportunity that not only afforded me more pay, but also paid my moving expenses to my hometown of Chicago. Upon my final training with S.O.R.T. before my transfer, the team and I were physically training (PT) by completing “The Murph.” A workout dedicated to LT. Michael P. Murphy, a Navy Seal who was killed in action in Iraq in 2005. The Murph begins with a one mile run, circuits of one hundred pull ups, two hundred pushups, three hundred squats and concludes with another one mile run, all while wearing a twenty pound weighted vest.

It was at the beginning of the workout that I felt a very familiar and uncomfortable feeling as I began to experience the “pins and needles” feeling in my left foot. Although I continued on and completed the workout, I felt very winded and lethargic. By the end of the training day, the loss of sensation rose all the way up to both of my knees. Around 3 am the following day, I had no feeling in my lower extremities and I ended up driving myself to the local hospital. Assuming that I’d pinched a nerve in my back, I explained the activities to the nurse as I was admitted for testing.

Upon going over my medical history, in the back of my mind I feared the worst. After several hours of body imaging, lab work and testing, I will never forget lying in the exam room. It was then that the admitting ER physician, who appeared to have been on the back end of an all night shift, walked in and nonchalantly told me the words that I’ll never forget: “We’re going to go ahead and admit you. Based on your history and some lab work, we feel that you may have Multiple Sclerosis. I’d like to follow up with a spinal tap.” Although prepared, I was in complete shock. I was alone and had no feeling in my lower body. When I called my then wife, I barely got the words out for her to come to the hospital.

Once admitted, I spent three days in the emergency room alone. The results of the spinal tap confirmed my worst fear: I had multiple sclerosis. I was immediately issued a steroid to neutralize an active lesion on my spine. The doctor informed me that the loss of sensation that I was experiencing was likely due to aggravating an already active lesion on my lower spine while working out. I remember letting the doctor know that I had to be in Chicago in less than two weeks for my house hunting trip. I asked the doctor when I would be able to feel my legs again. The answer to that question changed my life. “It’s hard to say. MS is very complicated. The feeling may come back partially or completely once the lesion is neutralized. Unfortunately, you may never regain feeling. Only time will tell.” That very weekend, while lying alone in the hospital bed, the Boston Marathon attack occurred. So many people were injured during that senseless act. Some would never walk again, some succumbed to their injuries. It was at that moment I realized, despite not having any feeling, I could still walk. I still had three perfect kids. Whether it was the steroids that were making me feel euphoric, or just the gratefulness to be alive, I decided that I would not let MS stop me. I told myself that day that I was going to run a marathon that following year.

Once I was released from the hospital, I began to regain some feeling in my legs. I had gained nearly 25 pounds in less than a week due to the fluids and steroids I was pumped full of. I began to see a neurologist and asked him if it was okay for me to begin jogging. He advised against it and told me that I needed to rest and try not to aggravate the lesions. I did not listen and tried to run a mile. After a few blocks, I became extremely tired and out of breath. I was depressed but determined. Less than a week later, I was on a plane back to my hometown of Chicago. That day, I regained feeling in my entire body.

In May, 2013, we officially moved to Chicago. The change in atmosphere, although frightening at times, was the best decision that I could have ever made. Although my marriage ended in divorce, I was able to accomplish so many new things in both my career and my personal life. My kids became close with part of their family that they wouldn’t have known otherwise. I coached both of my sons’ football, baseball and wrestling sports with my cousins whose children played on the same team. I organized a block party in the neighborhood I grew up in. I was able to spend time with two of my favorite aunts prior to their passing. I became an active leader at work, I was promoted once again and I organized the staff’s first annual 5K walk/run.

In September, 2015, my ex-wife and I separated as she moved back to Tucson. Despite everything I had already been through, the hardest time of my life was not during an MS episode, it was being so far away from my kids. Due to a freeze on all federal government job transfers and new hire positions, I was stuck in Chicago alone. I took the time to again focus on my health. I began to eat right and lift weights. I spent time meditating, praying and visiting friends and family. In April, 2016, the hiring freeze was lifted and I was finally granted a transfer to Tucson. Shortly before I left, a friend of mine challenged me to do something that I had always wanted to do: stand up comedy. I took about a week to prepare and I felt like I had a solid five minutes of material. Once I got on stage, I forgot everything that I’d written and improvised my entire set. Although it was a train wreck, I fell in love with being on stage and continued to do comedy on a weekly basis until moving.

As great as it was to be back in Tucson with my kids, I definitely felt the pressure of being a single parent with a full time career. I was placed into the Special Housing Unit where the problematic and disruptive inmates are housed, where I remained as the supervisor for over two years straight. Ultimately, I was awarded custody of my children full time and still do to this day. Thankfully, my parents, brothers and sisters lived close by and helped me on a regular basis. I felt so great that I decided to stop taking my MS medication, as I trained to run the Sedona Marathon in February, 2017 (one year ended up taking five, but I finished).

Although I felt unstoppable, MS reminded me that I am human. I ended up back in the emergency room in March of 2017 with active lesions on my spine. Despite my wish to maintain an all natural lifestyle, my new MS Specialist convinced me to go back onto medication in pill form. Less than a year later, I lost sensation in my face, began to drool and lost vision in my left eye and ultimately ended up in the emergency room for the third time in five years. It wasn’t until this that my employer took me out of the workplace that was causing me an immense amount of stress both physically and emotionally. I felt at that point that it was time for me to take a position at work that was less stressful. Although the position was less challenging, I ended up having to be on my feet and physically use my body on a much more frequent basis. The position was also a six thousand dollar per year cut in pay. The change in lifestyle caused my body pain and I was exhausted to the point that I was unable to sleep at night. Within a year, I felt that I was living just to work. I was too tired to exercise and unmotivated to perform any hobbies, I was constantly irritable.

After a long hard look in the mirror, I decided to take the chance in applying for early medical retirement. In May, 2020, I was granted my retirement and began to receive my pension. Since then; I’ve been able to spend more time with my children, I purchased a home, paid off my debt, I began to exercise and eat better. In February, 2021, I began producing and performing a free open mic comedy night at a local restaurant less than a mile away from my home. The open mic was recognized by the Tucson Weekly as the top five comedy nights in the Tucson area. I’ve made some of the greatest friends in my life and our mission is to support one another and help each other grow. We call our group GrAttitude Productions. During the course of this year, I met the love of my life, Melinda, who is the most supportive, kind, beautiful and dedicated person that I’ve ever known. Together, our goal is to give back as much as possible. As odd as it may sound, I owe everything that I have in my life to Multiple Sclerosis. I want to help others see that no matter what the obstacle, you can achieve as long as you believe!