Hi, my name is Mary, and I'm now 52 years old. I was diagnosed with MS on November 19, 1999. Since that fateful day, life has changed drastically. From graduating college the semester after I was diagnosed, to not being able to use my degree to teach since I went downhill so fast. To my body turning on me, my husband leaving me because he couldn't deal with the MonSter. To being paralyzed over and over again and fighting back, to being displaced from Hurricane Katrina. But you know what, life may not be what I thought it would, but it is what it is. So I enjoy what I have.
If you'd like to read the long version about my MS story, which was written in 2005 (updated in 2010), please do. I hope if you do, you can find something that might help you fight, and to know you are not alone in this...
Strength and attitude, two necessary components of life. Little did I know how much these two words would play into my future in 1995, when I quit working to fulfill my dream; to attend college and become an elementary school teacher. But in 1999, my health started going downhill. The woman who was involved in everything from attending college full-time, to two part time jobs, to full time wife and mom, to PTA president, to being a Type A personality would get the words from a neurologist that would forever change her life. "You have Multiple Sclerosis," he said. All of a sudden, life would never be the same.
It was my last semester before student teaching, and fulfilling my dream was so close. But that semester, I started having trouble with what I thought was vertigo, problems with blurry vision, and terrible headaches. My family doctor thought it was focal migraines, but because all these things were happening at the same time, he decided to send me for an MRI of the brain. Three days later, I found myself sitting in a neurologists office, tightly holding hands with my husband, as I was told I had MS. At that time, I had no idea the impact it would have on my life, and really did not know much about MS. Little did I know that I was in for a crash course!
I was put on one of the interferon drugs that are supposed to slow down the damage to your brain. I was referred to my local MS Society, and they were instrumental in educating me on my "new disease." They were my lifeline in my first months. Some of the material I read scared me, but I am a firm believer that education is the key to success. I wanted to know everything about this "MonSter" with which I had been diagnosed.
I was diagnosed the Friday before Thanksgiving in 1999. There are various types of MS, and the type of MS you have is diagnosed in hindsight, because it tells it's story over time. Unfortunately, my time was very short. As soon as I learned of my diagnosis, I went to my professors and was allowed to start student teaching early, just in case. Before Christmas of that year, I was using a cane to walk with. I continued student teaching, pushing myself, feeling that maybe this "thing" might wallop me before long. It turned out to be a good decision. On February 7th, 2000, I didn't have the strength to get out of the bed to go to school. Around noon on that day, I awoke from a nap, and found I couldn't move my legs. Thankfully, I was able to call a neighbor, and they had a key to my house. By the time they reached me, I was totally paralyzed.
A quick ride to the hospital in an ambulance confirmed that I was having an acute flare up of my MS. I was in the hospital for 7 weeks, and from that point, my life changed forever. I was still learning, but now it was medical words and terminology. Physical and Occupational Therapy, Speech Therapy. It was how to stand in a walker, how to move my feet when my legs felt like lead. It was learning how to swallow again. It was learning how to do simple things, things that we all take for granted. It was accepting being in a wheelchair most of the time. It was having my 12 year old son proudly push his mom across the stage in a wheelchair to receive her Bachelor's Degree with honors, instead of walking across the stage like I always dreamed I would.
It was learning a lot about myself and the inner strength, the will I had to go on. But I always knew that I would. My son was 12 years old when I was diagnosed, and my job here wasn't finished yet. They sent in a psychologist to talk to me, and the one question that burns in my mind is, "Have you had thoughts of suicide?" A very complicated question, but the answer was easy. Of course I had thought about it! I had weeks of laying in bed looking up at the ceiling, and the one thing that was working, impaired somewhat, but still working, was my brain. My answer was simple. "Yes, I think about it all the time, then I think of my child, and those thoughts fade away. He needs me here, now more than ever!" I found the strength to do what I had to do: to face the pain, the frustrations, the heartbreak, the changes. I reached down deep inside of myself and found a strength that was always there I guess, I just had never needed it before.
And it's this same strength and self-preservation that has gotten me though all the ups and downs. Because that 7 week stay in the hospital in 2000 was only the first of many. Physical Therapy has become a staple in my life. So has a wheelchair. I have been told three times now that I would never walk again. But I guess those doctors didn't know me very well. Yes, I still spend time in a chair, and can't walk very far. But I walk in my house, I walk when I feel strong, I walk for the simple joy of putting one foot in front of the other. I know that one day, the doctors will be right. But as long as I can put that day off, I will.
That same strength got me though my husband leaving me in 2003, because he couldn't handle the ups and downs of "life with MS" anymore. The heartbreak and shock of ending a 17 year relationship almost killed me, but as they say, what doesn't kill you makes you stronger. The same strength got me though losing my beloved Father in 2004.
That same strength got me through Hurricane Katrina, the relocation, being ripped away from my now 18 year old son. You see, I thought I still had four more years while he was in college to get used to the idea of him leaving the nest. But as everything in life, the only thing constant is change. I lived in the New Orleans area for all of my life, 47 years. Since after the storm, I relocated to Hattiesburg for two and a half years. I couldn't go home, not because my house wasn't there anymore, but because of all of my medical conditions. The medical infrastructure was not in place to "handle" someone like me... so I couldn't go back home.
Because my health kept getting worse, my family moved me back to Louisiana in April of 2008 so they could help take care of me. Still not back home, but only about 40 minutes north of the New Orleans area. It's wonderful to be back among family!
I have always wondered why I was stricken with MS. I think maybe that I was meant to advocate and educate people about this disease, to advocate for the disabled. Although I received my degree in education, I was not able to use it for that purpose. Now I use my training to educate people of all ages about MS. To smile at the child looking at me in the wheelchair asking his mom what's wrong with that lady. To overcome that mom's embarrassment by explaining to that child in simple terms that some people are different. Unless you've been in a wheelchair, it's hard to imagine the obstacles faced going out into the community in one. So it's easy for me to educate store managers that by changing simple things, it could make life so much easier. To affect change. To teach, which is what I always wanted to do.
After much soul searching and talking to family and doctors, it is painfully obvious that I started with MS when I was a teenager, back in the mid 70s. Back then, doctors told my parents I was having some 'emotional issues.' Now, when I go back and think about everything that's transpired over my lifetime, it all makes sense... You see, now that I have been diagnosed with MS for over ten years, the Neurologists have finally determined that I am Primary Progressive. It is the rarest type, which means I just have to fight harder to hold on. One that could put me in a nursing home at a very young age. One that may take me sooner rather than later. But one that has helped me learn that I am a very strong woman.
Strong enough to make it through the flare-ups, the constant changes in my health, my husband leaving me, the loss of my father, Hurricane Katrina, being separated from my son. And through that strength, I have learned that attitude is everything. Sure, it's easy to have bad days. But no matter the situation, you can choose to have the proper attitude. And that's what will carry the day. Believing in myself, along with the strength to carry that off, even on the worst days, is what keeps me going. When the angels come to take me home, I will go out kicking and screaming. You see, I still have a lot left to do here...