Every day I write the book

Every day I write the book

Zielinski, Karen J

One reader wanted her family to know about her life with MS– so she wrote it down.

Dear Karen,

I’ve been reading your column in Real Living with Multiple Sclerosis for years and it’s always enjoyable. I’ve enclosed a booklet– Multiple Sclerosis Basic Facts, Recent MS Research Data and My MS Life-that I coauthored with Ray C. Doane, EdD.

The primary purpose of this booklet is to make important and interesting information available to my close friends, relatives, and others who need to know more about multiple sclerosis (MS) and its effect on people.

It’s been my experience that individuals who have little understanding of MS generally don’t initiate discussions of its effects on me. Usually, they seem uncomfortable and are reluctant to ask for information.

MS leadership organizations recommend that people with MS provide communication and leadership by preparing and promoting learning resource materials to help build greater understanding about MS. I have enclosed my book for you. I’d appreciate it if you would send me your book.

Helen Peterson Sparta, Wis.

Dear Helen,

Thank you for your letter and 16-page booklet. I have to confess, my book is in outline form in my mind. Actually, I have two book ideas. One is a reflective book that takes MS stuff (magnetic resonance imaging tests, visits to the neurologist, and so on) and looks at it from a spiritual/philosophical perspective. The other is about a nun in an electric cart who solves mysteries! I know this is farfetched, but one has to dream, right? (Are there any publishers reading this?)

Helen, I think what you did for your friends and relatives is admirable. I see from the inside cover of your booklet that you were a teacher for more than 40 years. I think your booklet reflects the teacher philosophy: Knowledge is power. When people know that MS can cause symptoms such as fatigue; temporary worsenings in hot, humid weather; and visual problems, they may better understand what a person with MS has to endure everyday.

The format of your book is very readable. You cover three topics: “Basic MS Facts,” “Recent MS Research and Data,” and “My MS Life.” I caution you on the first two categories: The world of MS research is changing almost weekly and, because this booklet was updated for your third edition in 1994, some facts are outdated. The section about your life with MS is warm and personal. Sharing your experience is always helpful to others who live with MS. You comment on such topics as dealing with depression, MS support groups, and plans for the future. The section of inspirational sayings was warm and conversational.

Whenever I want to find out about the latest MS research, I call the National Multiple Sclerosis Society (NMSS) at 1-800-FIGHT-MS. After the National Institute of Health, the NMSS provides the most funding for MS research. Their publications, such as Newly Diagnosed and Just the Facts (frequently asked questions about MS and the NMSS), are clearly written and timely. The information that is from the NMSS is probably the most accurate and up-to-date information on MS in the world.

Helen, I applaud you for being assertive with your disease and letting your family and friends know what MS is and how you live with it.

I think your dedication on the back cover of your booklet conveys what you tried to achieve: “It has been a great pleasure for me to share with you an abundance of MS information. My hope is to help you be informed about MS very specifically and what it has done to my life. You can be sure that I am constantly being very active and that pleases me very much.”

For additional information about Helen’s publication, write to Helen F. Peterson, 732 Habhegger, Sparta, WI 54656; or call 1-608269-2365.

I promise you, when I publish my first book, which I plan to do, you’ll get a copy. Thanks for the motivation and inspiration. Peace,

Karen

Karen J. Zielinski is a Roman Catholic nun and head of the Communications Office for the Sisters of St. Francis of Sylvania, Ohio, and is a freelance writer. This is her 26th year of living with MS.

Copyright Springhouse Corporation Aug 2001

Provided by ProQuest Information and Learning Company. All rights Reserved