Me, floating off Guana Island in the British Virgin Islands (my happy place) with my son-in-law and daughter’s sailboat, Mary Christine, in the distance.
To share with you the Peace of my Soul, I have to begin by giving you a “piece” of my soul. In the beginning, 1997, I followed my life, I did not advocate for it. I was in a lonely place figuratively and literally. I was diagnosed with multiple sclerosis just after Christmas 1997. I was very nearly a single mom and didn’t know it. Looking back, the writing was on the wall, so to speak, (actually there was writing on many walls in my house) and red flags were waving in the wind from my very own front porch.
I was working from home as a medical transcriptionist, back in the day, (pre voice recognition). It was, and still is, a perfect profession in my humble opinion. It allowed me to stay home with my babies (6), and still make a living. My toes became numb symmetrically, the day after Thanksgiving 1997. Slowly the numbness rose up my legs erasing sensation as it climbed. One day I asked a physician I typed for about it and he casually said, “MS can present that way.” I wont ever forget that moment. It’s like ‘still life’ in my head. I was having a hard time walking but was SO grateful it had not reached my hands and fingers, as that’s how I made money! I went to my own doctor, was referred to a neurologist, and MRIs of my brain and spine were ordered. The diagnosis of MS impacted me like a hammer.
First up, anxiety, depression and “What if I end up in a wheelchair or bed and can’t take care of my kids?” The ‘what-if’s’ perpetually inundated my mind and heart. I was married to my best friend (or so I thought), who I had been with for 13 years. I knew he would take care of me. The numbness became worse, moving up to my waist – I couldn’t walk without assistance. I had my first dose of IV prednisone, 1 gram infused over an hour. If you’ve ever had high-dose prednisone, you understand. I had 3 days of this horrible medicine. By the end, I felt like I was going crazy, crying, emotional, couldn’t think, take care of my kids, not to mention work. The prednisone began to alleviate some of the numbness in my toes and legs, but to my horror it moved up to my chest, down into my arms and lastly to my fingers.
I began to see other doctors, I was desperate for help and to be able to “feel” again. Nothing worked. I started taking daily injections of Copaxone to keep the MS from getting worse. Not being able to “feel” is the most horrible thing imaginable. Today I can’t remember what its like to ‘feel’, nearly 19 years later. In February 1998, I found out my then husband had a girlfriend he had been seeing for a year. I became even more depressed. He left and we lost our house, our cars, and what I thought was my life. My children were young, most of them under the age of 10. I had been in love and now had been kicked to the curb – with MS, no house, no job, and little ones to care for without child support. That’s when I began to realize it was up to me. With family help we found a place to live, I got another transcription job, a little car that ran, and we started over. My husband was gone, I had a disease I had no control over, and I had kids to take care of. I realized then that somehow I had to go on. People asked, “how did you do it?” I remember thinking, ‘you mean I have a choice?’ Hindsight truly is 20/20, because this was all a blessing in disguise, but it would be much later until I could relate.
We struggled to survive after that, there were things we didn’t have and never would have as a family, but we had each other and our love. We moved often for a variety of reasons. We all learned and loved. There is a lot I wish I could have changed, especially for my children, but I believe everything happens for a reason.
I have MRIs yearly, have had many more infusions with better results for stress induced exacerbations. I’ve tried other medications, too numerous to mention but went back to Copaxone last year. Fatigue is one of the main things I deal with, but stress and loss of sensation continue to be issues for me. I continue to try to dominate this disease every day. I remarried in 2010 to a man who takes very good care of me and supports anything I decide I want. Next up, a sailboat when we retire, sell the house, Harleys, cars and many things that we just don’t need.
In 2015 the last of my 6 children graduated from highschool. I DID what I signed up to DO, despite MS. I’m proud of myself and who I have become because of it. My 3 girls and 3 boys still try my patience, need my attention, sometimes my money, my time, and my thoughts but I count my blessings every day They are my world. These days it is a little bit easier, though some times I think stepping on Lego’s in my bare feet would be more appealing! I have good days and I have better days.
I still forge on in the wake of MS. If I can do it, I believe you can too.
We are not alone!