Diagnosed with multiple sclerosis aka MS in May 2009, Patrice Majors the co-owner and founder of FOCUS on the 615, shares her personal story about living with this disease as she tells you where she’s been, how she got here, and where she’s headed. As a result of numerous problems with MS and a recent health scare with her heart, she embarks on a journey to return to the best shape she can get into. She will share with you what she learns about good health along the way as she trains and prepares to enter the MS Jack and Back bike event here in Nashville in the fall where she has set her goal to complete the 120 mile bike ride from Nashville to Lynchburg, TN (Jack Daniels Distillery) and back in a 2-day ride. Come share the experience with her as she trains for this event and tells you her story of how she got here in the first place seeking to raise awareness for MS along the way.
Well, I guess I’m ready to tell the next piece to the story now.
The MonSter Within
Oh, yes, so the 2nd piece to my story about how I became an entertainment journalist and created FOCUS on the 615, is because a MonSter came into my life. That MonSter dwells inside me to this day. What the heck am I talking about? MS aka multiple sclerosis aka the MonSter. What exactly IS MS? Well, let me explain.
MS is a chronic auto-immune disease with no cure. In a nutshell, my body has turned on itself and attacks the nerves. The white blood cells that normally fight off illness have decided that MY body is the enemy and those little buggers are attacking my nerves and eating away at the myelin covering. Myelin is the insulation that protects the very sensitive nerves. When that insulation is removed due to the white blood cells attacking, that when all hell breaks loose and for lack of a better turn, my body goes haywire! Since your central nervous system includes the brain, spinal chord, and all the nerves throughout the body, that can mean a whole lot of trouble. Like what, you ask? Well, in the 6 years that I have been diagnosed with MS, I have experienced a multitude of symptoms.
So, let’s go back to April 2009 when that MonSter within started rearing its ugly head. I woke up one morning and what to my wondering eyes did appear, but a….wait, this ain’t no Christmas story! This is real life, so let’s back this on up and tell it exactly like it was, shall we? So, I remember waking up one day to find that the left side of my body from my foot to my neck was numb with a weird feeling right in the center of my back. Hmmm….what the heck? Oh, wait, this must be what a pinched nerve is. I’ll go see my PCP. So, I go see my PCP who immediately referred me to my neurologist, Dr. Timothy Lee. Well, Da Nile ain’t just a river in Egypt! I professed that this was not something serious and decided to cancel that appointment. Why they heck was I going to put myself through some expensive testing for only a pinched nerve that would go away in a few days and I would return to normal? Seemed like a legit idea? I mean, really.
Well, I took my denial and I made an appointment with my wonderful chiropractor, Dr. Dedmon. After all, my years of experience in the medical field made me an expert in these things. I’m really good at reading labels and Googling you know! I am an expert or so I thought I knew better than my PCP who has actually BEEN to medical school and has had years of a very successful practice. Certainly MY bachelors degree in advertising and years of experience taking aspirin when I get a headache, reading labels, and Googling trumped all that. (insert sarcastic tone here) Again, that river of denial was running through me, too, along with the MonSter. That is, until I had my “come to Jesus” moment after 3 trips to my chiropractor didn’t help things and I went to an acupuncturist for the first time. He had a lot of questions for me before the session would begin. After several minutes of questions, he feel silent for a minute and looked at me. Then, he simply said “are you being tested for MS?” Me: “What the heck is MS? I’ve heard the term, but no clue.” The acupuncturist: “I would suggest that you reschedule that appointment you just told me you canceled with the neurologist.” Well, no more was said after that point and our session began. However, as any “expert” like myself would do, as soon as I arrived home, I sat down at my computer and Googled “MS”. You know how Oprah has those ah-ha moments? Well, I had what I like to call my “oh shit” moment!
I’m going to apologize right now for my language and hope I don’t offend you, but I’m just being real. These are my raw thoughts and recollections. I’m just telling my story the best way that I know how.
After I ran down the list of symptoms for MS and I could check off pretty much all of them, I decided it was time to quit denying that there was something seriously wrong with me and find some real answers FROM a real medical expert, my neurologist. So, I rescheduled my appointment and it was only 1 1/2 weeks later that I woke up for a 2nd time to find my right side had become numb overnight from the waste down. And, then it was just 2 days later that I was at work when my right hand & half way up my arm turned numb. From that moment on it was panic time. I was immediately taken off the phones, I’m a travel agent by day, and placed on medical leave of absence to allow me time to figure out exactly what was going on with me.
So, I had a series of tests from a series of MRIs and a spinal tap. Within one month’s time, I was diagnosed with MS, which is pretty much unheard of. For most, it can take years to diagnose. It’s a complicated disease. Not only that, but I remember my neurologist having a very serious talk with me. Not that MS isn’t serious enough, but he wanted me to know the straight truth about what was happening to me. He didn’t want to alarm me, but it was important for me to know the realities of my diagnosis. See, MS is very different for everyone diagnosed with it. We all share a lot of the same symptoms, but everyone has different ways that it effects them and degree of severity. For some, it’s a very minor thing and they go on to live just very normal lives. For some, it can be moderately severe, and impact on life can be challenging at times, but still management. Then, for a small handful of MS patients, the symptoms can be extreme and unstoppable. For me, I fell into the extreme and possibly unstoppable category. I remember my neurologist very clearly stating: “I have to be honest with you, in all my years practicing medicine and treating MS patients, I have never seen anyone have as aggressive of an onset of MS as you. The current therapies available might not work for you. They might not be able to stop the progression.” My heart dropped and the tears started flowing from my face. I was already about 75% numb, falling, dealing with memory problems, and by that point, I had lost complete use of my left hand. It was simply there, but unusable as a result of the numbness that was taking over my body.
What did this really mean? Well, it meant that I was looking at the most severe form of MS that there is. Most people with MS fall into the least aggressive course of MS with is relapsing/remitting, which means you have an MS exasperation like numbness and then it calms down, then goes away. You might not ever have another exasperation or you might have many.
After the 3 years of putting together music benefits, I had gotten to know a lot of music industry people. When they found out what was going on with me, a few friends spearheaded the organization of a music benefit for me at the Listening Room in Nashville. One of them was the owner of the Listening Room, the others were close friends Whitney Layne and Shary Essig. It was happening the day before I was being placed on house rest for an entire month when I would start the MS therapy. My doctor stated that he “wanted to give my body the best possible chance for the medication to take hold, because if not, he wasn’t sure what could be done.” What exactly did this really mean for me if could not be stopped? Since it was already effecting my balance and I had lost use of my left hand due to the numbness I was experiencing, it was only a matter of time that the numbness in my legs was going to cause me to lose the ability to use them. I might be spending the rest of my life in a wheelchair or worse, bedridden. This is a very real and frightening reality for all MS patients. If progression of the disease can’t be stopped and damage to the nervous system continues to take place, you will lose your ability to walk, move, and/or see. This is the most severe aspect of it, but very real and very scary.
Oh, I remember crying in the arms of a friend and telling her “I would rather die than spend my life in a wheelchair or blind.” I know that sounds dumb, because life, no matter what is precious. You just have to understand my mindset. It just felt awful and I didn’t want to face that future. My friend looked at me very determined with such loving concern and said “Patrice, you’ve got to fight this. You’ve got to fight harder than you ever imagined. You can do this, I have faith in you.” With tears streaming down my face, I remember answering with “I’m not sure that I can. I’m not that strong. I just would rather die than to have to face that future.”
The benefit that my friends put together was wonderful. I was certain that on that stormy night in May 2009, no one would show up. No one would care that much. “Thank you for wanting to do this for me, but you’re just wasting your time.” Well, I was dead wrong. How could I be so wrong? Over 300 friends packed the Listening Room that night, including the ones performing and one who had flown in from Los Angeles to be there, Alana Grace. I was overwhelmed by the outpouring of love I felt that night. I remember my sister turning towards me and saying “Patrice, do you feel that?” I said “feel what?” She said “you have a packed room of friends old and new here for you tonight. Just for you, because they want to give you the support and courage to fight this. You are very much loved, Patrice. I have never seen so much love all in one room.” She was right. I felt it. As friend after friend got up on stage to perform, there were all the friends showing up just to be there in support. Tapping me from behind to get my attention to show they were there, hugging me, smiling…just a room FULL of people on a night that there were thunderstorms and tornado watches. They had even fought bad weather to get there just for little ole me. I never could’ve imagined that. Never predicted. I just didn’t think there was anyone, much less a room full, that would care that much.
Well, that’s enough for tonight. This is to be continued and on-going, so I’ll talk more, probably tomorrow. Bottom line is when bad things happen to you, you find out who your friends are like the Tracy Lawrence hit song. I found out who I really had in that one very special night.
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