My story – much the same as yours I suspect. Life was moving along as it should; married to a wonderful man, two children – a girl and a boy, great job and a dog. One day in 1998 I noticed numbness in my leg. Not too concerned really I put off any tests until after my “first ever” two week summer vacation. Returning from holidays I began notice weird things happening with me. The overwhelming tiredness was unable to ignore. I found a normal day in the salon to be quite challenging. My eyesight began to give me problems. I soon discovered my blurred vision was displaying at least two of everything. Other parts of my body like my face - became numb. Scary – for sure!
Lucky for me I guess, I was diagnosed with Multiple Sclerosis very quickly. In October 98 after spending a week in the hospital, the neurologist told me he was 99% sure I had MS. I went home with this news and spent a few weeks recovering from both the relapse and this revelation. I did go back to work in my hair salon in the basement but after the Christmas rush and a second relapse I decided that particular profession was too demanding for me. There were too many people depending on me and that worry was enough to keep me stressed both emotionally and physically. I closed Changes Hair Boutique in January 99.
Did I feel defeated? I’ll have to admit initially I was more relieved than anything. It felt as if a huge burden was lifted off my shoulders. Once I settled into this reality, daily being reminded by the salon furniture still set up in my basement, yes I felt a little defeated. Since I knew I’d never return to my salon I decided to sell the furniture. That was a difficult day. Of course giving up my job brought about financial struggles. Once again I was lucky in that I was approved quite quickly for disability. This was great as far as the money was concerned but for me, I’d never dreamed of being on a disability pension at the age of 29. I was meant to be a professional woman. Adapting to the housewife and stay-at-home mom thing was difficult indeed. I am not Molly Maid. I’d rather be doing just about anything than household chores. But I soon realized I should be thankful that I was physically capable of doing my chores.
I soon started filling my free hours with hobbies – knitting, sewing and paint-by-number. I began using the computer and exploring the Internet. Of course that’s when I found Jooly’s Joint. It was definitely the best thing that could have happened to me at that time. I didn’t have any friends or acquaintances with MS. I need someone to talk to who understood what I was going through. I met loads of terrific people and formed some (hopefully) life-long friendships. I’ve met some of these wonderful people at a meeting in 2004 at Niagara Falls. In 2006 I went to England to visit with a few of my JJ friends. I’ve had several great experiences through travel since my diagnosis. In 2005 I was picked to attend The Heuga CanDo Program in Vancouver, BC. I plan to do plenty of travelling, perhaps even to see you, once my kids are off to college.
It was probably early in 2000 that I began to cultivate a long buried interest of mine – writing. I decided one day to write a book about my MS diagnosis, so I did. I sat down with pen to paper and six weeks later I had a rough manuscript of my first book A Child of The King. I had this book published by PublishAmerica in the US but after finishing it I still wanted to write. I began writing short little pieces which eventually, a year or so later became my second book Coffee Sweeteners, published again by PA. These books took me to places where I met many people. I was invited to speak at several Church functions and women’s groups. My story was shared in a national publication by the Salvation Army called The Catherine. I continued to write and I am hoping to have my third book Relentless published this year.
I love music and belong to a very musical family. I sing and play a little guitar (enough to accompany myself ). I’ve written some songs Christian/ Inspirational and am hoping one day to record a CD. I’ve also used my writing skills to do some freelance writing for a couple of Internet businesses. Lately I’ve stepped back from the freelance writing because what was once a means of enjoyment began to feel too much like work. I’ve decided to save my writing interests for projects that I choose to do not those I have to do.
I know you must be thinking well she’s been quite busy. Well there were times when it seemed that way but nowadays I tend to have way too much free time. I am always looking for something new, exciting and attainable to do. I’m sure the perfect gig will pop up one of these days. Until then I’ll enjoy days at my cabin and nights curled up on the couch with my knitting needles. I’ve had my share of relapses and steroids and I too dread my injections but I feel I am currently doing quite well with MS. Of course I’d love to see a cure and live in hopes of one day being a part of it. There are many ways to look at Multiple Sclerosis. We could spend all our time worrying about the “what ifs”. We could choose to barricade ourselves at home and cut ourselves off from the world. Or we could accept this disease for what it is, learn the best way to medically deal with it, accept our limitations and move forward in search of life’s possibilities. I choose to move forward!
