PeopleWithMS.com

Rebeka

My story is below. This is not the one in the book, but it is a shorter version of the one on my website. I want to thank you again for all of your help! Before my story starts I was a typical twenty year old. I enjoyed dancing, going out to clubs, shopping, hanging out with my friends. I had a serious boyfriend, the best friends anyone could ask for, and a family that backed me up no matter what. I was sick quite often, had a lot of back problems, headaches, and I was always tired. But that was normal for a teenager...wasn't it? I remember the symptom that told me something might be wrong. I was driving home from work one night, I looked down and I got this weird tingling sensation down my spine. I brushed it off as a pinched nerve. I didn't have medical insurance, as I’d just started this job, so I waited to go in to the doctor. I got progressively worse. I went numb from the waist down, my head was so heavy it was hard to keep it up, then I got excessively dizzy. I felt like I was drunk all the time. Eventually my insurance went into effect and I had an MRI, then a spinal tap. I was relatively lucky, I got my diagnosis after only a few months of looking. I remember everything about the day I got my diagnosis. My mother and I were both there. We both cried, I don’t think either of us really felt any relief. Neither one of us knew what Multiple Sclerosis was or if it was a better diagnosis than a brain tumor or a stroke that we were sure I had. After I got out of the hospital and got my diagnosis, I could only think ‘So what now?’ My family and I did a lot of research on this disease. It didn’t really get less scary as I read more about it. No one knew, that in itself was scary, I was facing the unknown. I had no idea if I’ll become wheelchair bound, blind, completely unable to care for myself, or possibly even die. It didn’t matter, I remember telling myself, I was going to be one of the lucky people who only had problems every few years and the rest of the time I’d be fine. I quickly had to eat my words. In a year I had had four relapses. Each one different displayed symptoms and severity. The question remained ‘So what now?’ I now realize, that’s a question no one can answer. A lot of the changes I had to make were embarrassing to me. I began walking with a cane, then a walker, and at times I couldn’t walk at all. People don’t expect a twenty-something person to be using a walker or cane. However, as embarrassing as it was to use the cane, it was much worse not to. I was at the mall where I worked one day, on my way to work, when I got stopped my a security guard. He told me that they frown on people coming to work drunk and it better not happen again. I explained that I wasn’t drunk, but it was mortifying to me. When I am in stores and use their motorized scooters people look at me weird, and assume that I’m some kid just playing. At different times my boyfriend, friends, or family members have told people why I was using the scooter, but even that is embarrassing to me. I appreciate them standing up for me, but at the same time I don’t think everyone needs to know I’m sick. Another embarrassing change I’ve had to go on disability. It’s hard to see people I know, but who don’t know I’m sick. If they ask where I work I have to tell them I don’t. I appear to be a bum, and if I tell them about my MS I appear I’m asking for sympathy. That’s not something I want, there is no need for sympathy. I spent the first year of my diagnosis being miserable and feeling sorry for myself. My life had been going wonderful, and suddenly it screeched to a stop. It took a while, but I realized, I was why my life screeched to a stop. MS had given me barriers, but instead of finding ways around those barriers I had just given up. I began doing what I was most passionate about again, reading books and attempting to write my own. I don't remember when it clicked, but sometime it did. MS didn't have to be a curse, it could be a blessing, this gave me the perfect material for a book. My story alone couldn't help anyone, but perhaps a book with several stories from many people dealing with MS...maybe that would help people. So that's what I did. I worked for two years collecting stories and compiling them into a book. Has it helped anyone, yes without a doubt. I'm back, perhaps even better than before I was diagnosed with MS, and I've accomplished a life long dream of getting a book published. MS isn't a curse, it's just the hand i was dealt and I'm going to play that hand to the best of my ability.