Thursday, November 6, 2014

Carnival of MS Bloggers #161

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Creating a World of My Own
by Melissa L. Cook of

Papers stacked high, email flags a mile long, a budget to reconstruct on my desk, a teacher in for an evaluation, and it was already 2:30 pm - I would be home late again tonight. Double-timing as I navigated the halls of the school touching base with each of the teachers to see if they needed anything - support, supplies, a travel request. On to instruct an after school teacher inservice and then I would hightail it to a conference call on a new state report. I loved my job. My career as a school district administrator was, simply put, awesome. Little did I know my driven world would abruptly skid to a crawl, robbing me of my oomph and leaving me alone with no more tasks to complete than to peel myself out of bed, slip on clothes and cook dinner - tasks proving difficult at best on some days. Multiple sclerosis had taken an ugly turn for me for a period in my life.

Initially I was too ill to be aware of my devastating launch into isolation. Loneliness was a few months off. Fearing the worst was about to befall me, I planned my final arrangements and put my affairs in order. Then I waited. Nothing. Waited some more. The shock of being alone hit me like a ton of bricks. Overload at the office made it difficult to sustain meaningful relationships in the after-hours clearly evident at this point in my life. I was alone now during the day; my life would never be the same.

A few years later, I would write a blog post called, “Disability is Not a Bundle of Sick Days” with the conclusion, “It is as if I have spent the past 31 months out on sick days. Disability isn’t a sick day, it is life. It is about time I realized it and start living again.” I hid in my home for two and a half years. I was sick. I worried the people of my small town would question why I wasn’t working if I could mosey into the post office or store. Then one day I ventured out with a camera in hand to photograph the fall colors and was welcomed with open arms by my neighbors and friends whom had wondered what happened to me.

Johannes Vermeer, A Lady Writing
Creating a world of my own came from the freedom gained in throwing out the “sick day” mentality. Multiple sclerosis is a day-by-day illness meaning there are times I feel normal and can do things I used to. The first order of business was making new friends. Second, purpose was reintroduced into my life when I began blogging about my MS story and the latest research on Third, my desire to help others led me to become a first responder. People with disabilities can be assets to the EMS. Then, I became a board member for the local domestic violence and rape crisis center, putting my administrative training and education to use. Now I am polishing up a children’s story I have had on my mind for years and have a collection of short stories on living in Alaska’s bush country to revise.

Multiple sclerosis still hangs around my doorstep making an appearance periodically. However, I balance my new world in a way I never could with the demands of being employed. Resting as I need and remembering “all things in moderation” allows me to live an awe-inspiring life without the career I once loved.

The old saying, “When one door closes, another one opens” has been so true for me. My career goal of becoming a superintendent of schools with a Ph.D. was not realized. However, my dream of writing is taking shape. In addition, I find time to play with my grandchildren, quilt, bead, take photographs, and I want to learn how to paint with watercolors. Creating my own world becomes more exciting by the month. Yes, I still spend most of my days alone but I am not lonely; I am happy again. And, at the end of the day my best friend comes home to spend the evenings and weekends with me. I love you, Elgin! Thank-you for keeping me going.

This concludes the 161st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 4, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 2, 2014.


  1. I'm not sure where the email address is to send this link to so I'll post my blog page here in hope that you will publish the blog on this page. Thank you!

  2. I was just reading your posts on life with MS and other things. I really appreciate your perspective. As I read, I could not help thinking about a project that my kids are involved in.

    We have a neighbor who has had MS since she was about 23 years old. She raised 2 kids while in a wheelchair and living in a old not wheelchair friendly house. Her husband Randy is ALWAYS doing something nice for people. He has helped us on numerous occasions in between ranching, working full-time and caring for his wife and ailing father.

    I know you guys are busy, and it is a long shot but, I just wondered if you could take a moment to watch a movie my 14 year old niece made in an effort to help raise funds to get Sam a new house. We would love your feedback and any help in helping us reach this goal.

    Thank-you in advance,

    Naomi Pedersen