W-E-L-C-O-M-E to my little corner of the planet. Take a seat, get comfy. You're among friends, so please feel free to comment. Thank you for stopping by and I hope you enjoy my ramblings. Be sure to scroll all the way down to get the daily puppy ~ they're so cute!

Sunday, February 12, 2012

"An Enigma"

Encarta dictionary defines an enigma as:

"Somebody or something that is not easily explained or understood"

I spent almost two years termed "an enigma" by the medical community. These weren't healthcare professionals with little or no experience.  I have a team of five dr.'s who scratched their heads at my test results and didn't have a definitive diagnosis to give so that effective treatment could begin.  I could (and have) written volumes about that period of time when I knew whatever I had was progressing and the damage could not be repaired.  I lived in fear that I would die before there was a diagnosis and treatment.  I'm stoically silent about it most of the time. I'm not a whiner and I know there isn't anything anyone can do to help, and I don't need pity.  The darkest part for me, no one else understood the magnitude of despair. I went so far as to get all of my affairs in order so that when whatever I was suffering from took me, at least my loved ones wouldn't have to deal with too much. Almost four years into my illnesses now, I've since gotten diagnosis and am on treatment for RA, lupus and fibromyalgia.  The FB writers group Talking Fiction was created for authors to have a place to go for support, tips, ideas from other writers and has been a valuable resource for me.  I've met online some very talented writers that I admire and am honored to have an association with.  Terry Crawford Palardy is one of those writers and I'm thrilled to feature an interview with her.  She has the courage and knowledge to write a book titled "Multiple Sclerosis: An Enigma".  That title is what caught my eye and got my attention. I'd been called an enigma for so long, I wanted to read about her experience and it was like living my life through someone else's eyes.  Finally, someone who understands the sometimes so impersonal process we've been through to get a diagnosis and treatment.  Just to clarify, I don't have MS, however the symptoms and diagnosis process is similar to what I went through.  Autoimmune diseases are still a mystery to the medical community today.  Here is some of her story, and links to her pages to find her books.  She graciously sent me her book and it moved me to tears, but at the same time gave me a strength I didn't know I had.  If you or anyone you know has an autoimmune disease, this book will empower you!

Welcome, Terry :-)  Let's start with some basic information about you:

I read in your Amazon author profile, you have been a teacher prior to retirement. This is very close to my heart as my daughter teaches high school math and I believe it takes a special person to do that in that you really do have to love it.  Do you miss working with young people?

Yes, I do miss being in the classroom for discussions with my students. They are so openly honest in their observations and remarks, and they are not afraid to disagree or to build upon another students' comments. They have so much energy ...each grade level (and I have taught everything from first grade through eighth) has their own way of interacting with each other.

And as much as I miss my students' voices, I miss my colleagues more. I was blessed to work in a school where everyone cared deeply about education. I worked with colleagues who were co-leaders, who helped "unpack" the state standards and make them fit our very well designed curriculum benchmarks, rather than trying to make our school fit their model. In many instances, we far exceeded the state goals, and did not want to lessen that advantage for our students. And so we worked carefully to stretch each core discipline to include literacy, and to enhance a wider breadth of subject matter. It was exciting, and is what kept us energized in the face of all the national teacher criticism that filled the media. We knew we were good. And we defended our successes.

Did you get bit by the writing bug, or is writing something you've always done matter-of-factly?

I began writing holiday poems in elementary school, and wrote some letters to the editors in college. As a soccer mom, I wrote sports articles for my son's team, and that led me to write a column about life in our small town for our local newspaper. But real training as a writer began when I was invited to write a semi-annual column for the Phi Kappa Phi Forum, titled Education and Academics. Those columns allowed me to question the changes and new mandates imposed by federal and state governments. I was able to confront the "poor mouth" budget battles that we faced each year. My voice became more clear, and recognizable to many who followed my work. The editors gently molded me into a more formal writer, one who didn't use so many contractions, and who knew the MLA and AP writing style manuals. But more importantly, they gave me a platform and let me run with it. Those columns are now in a book, my first self-published book, which is in print and on Amazon kindle now.

You have such a varied repertoire, do you remember the first thing you ever wrote, i.e., short story, poetry, novel?
I do! I was very competitive as a student in fifth grade, and our teacher, Miss Phillips, appreciated reading poems that I would write and share. One of my classmates, a boy named Tommy who had red hair (he will always be "a boy named Tommy who had red hair" in my memories) also wrote poetry, and so we started a contest. I think it was a tie, as judged by a wise teacher, and mine was about Christmas, and I think his was about baseball. I don't remember what I wrote, and any thoughts of saving papers for later was futile, in a house with so many sisters and brothers.

Like many up and coming artists, I need an income while waiting to support myself with writing. My day job is in the wonderful and exciting world of insurance, so I have to find time away from a 35 hour a week job to write.  Do you find now that you're retired, you have more to write, or just more time to write?

I thought I would be writing reams daily, but I find myself more often reading, and as often reviewing others' work. As a teacher, responding to students' writing had to be clearly delineated with rubrics and standards, and often defended in parent meetings. To take a subject like English, which involved so many sub-skills (reading, writing, grammar, spelling, even penmanship) at so many different levels, and then distilling all of those measures down to one letter grade for a report card was very subjective. But now, I read, and I comment, and I try to teach lessons missed or forgotten, and the authors, so far, are receptive to my help. And I am able now to "grade" the way I always wish I could have graded in school ... I give five stars if the piece has achieved that, and I don't give stars if not. I say, "not yet."

I spent the first five months of retirement gathering and polishing and publishing pieces I'd written through the years, and put six books into print in that short time. My most recent book, "Multiple Sclerosis: An Enigma", took the longest, as I was actually writing it from scratch, with only some notes in a journal to guide me through time. I did have some editing help at a writer's site called FanStory, where writers write and read each others' writing and critique it, from poetry to nonfiction to fiction. I built my story chapter by chapter, week by week, and then rebuilt it as a continuous story before publishing. It took about three months, and covers brief passages from early life, but focuses primarily on the four and a half years from diagnosis to publishing.
I have a long list of books waiting for me to find time to read them.  I'm always intrigued by what other authors read and to see if it's a far cry from what they write. What are you reading now and what's on your 'to read' list? Do you have a preference of genre to read?

Before writing "Multiple Sclerosis: An Enigma", I was reading a lot of books that dealt with chronic illness and patient assertiveness. I'd read Richard Cohen's two books, "Blindsided" and "Strong at the Broken Places". I read "The Empowered Patient", "MS for Dummies", and several others. But my next book will be a mystery. I'm reading a lot of mysteries right now, and reviewing them at my blog. Most are books that I've been able to get on Kindle, but I also have been buying used books that are things I've wanted to read for a long time.

But for true reading pleasure, I like biographies, and histories. A favorite author presently, one whom I've heard speak about his books locally, is Stephen Puleo. He writes of local history, and my two favorite books of his are "Dark Tide, the story of the Molasses Flood in Boston", in which he focuses on the ordinary people and what happened to their lives, families and businesses. He also tells the story of molasses, it's value in making munitions that were being sent to the allies during the World War (I) and the economic results of America entering and ending the war, and  "A City So Grand", Boston from 1850 to 1900 during which time Boston was a center of abolitionist movements, the first city to develop a fire alarm street box system, and a city that increased its geographic real estate by filling in the back bay and developing neighborhoods to house the gentry who would keep the city a focus of economic growth. I love the way he writes about people, not just events. I would like to be able to write as well some day.

Let's talk about chronic pain and deterioration diseases.  I have RA, lupus, and fibromyalgia (a tri-fecta!) and I remember before I got my diagnosis, was at one time termed "an enigma", which is one reason your book "Multiple Sclerosis: An Engima" got my attention.  Autoimmune diseases are a mystery to many people including the medical community and I stopped trying to explain it some time ago, yet you seem to be a crusader.  What keeps you going? Do you ever get tired of trying to get people to understand the uncertainty and frustration? 

What keeps me going is the need to create awareness of these illnesses, the changes they cause in people's lives, and the invisibility of their symptoms which can leave the patient feeling like a fraud (me) or being ignored by those from whom they need the most support (not me.) I also want the rest of the world to recognize that each of these is not a small deal, but rather large in our lives. I am angry that the treatment for multiple sclerosis recommended by the medical community places all responsibility on the patient, providing only minimal "training" and support for that treatment. I don't believe for a moment that student nurses are given only one session on how to safely and effectively inject medication into a patient, yet that is what is expected of the multiple sclerosis patient and family.

I don't get tired trying to convince people who need convincing - my father taught me long before I knew I would have this diagnosis that it makes no sense to keep beating yourself against a stone wall...turn and go around it, in a new direction, where you can use your skills to their best advantage. That is what I am doing in this book. There are many other ways to approach these conditions, and I would advocate self-assessment for patients. A change in menu, a change in lifestyle, a change in location...all offer something better, but the only thing the medical world promotes is more medication. It doesn't have to be that way. My story gives some of the reasons to make other choices.

You're account of MS in your book "Multiple Sclerosis: An Enigma" is a powerful first person account of living with the symptoms for many years and finally getting a diagnosis. It was especially poignant to me to read of 'mourning the loss'.  The loss of the ability we had before, the loss of hope in having a normal life hereafter. It's gone, we can't bring it back. It is very much like someone died and we grieve the loss.  It took a long time for me to get a diagnosis and it was somewhat anti-climactic in that...it didn't change anything.  All of my symptoms and limitations were still there, and there still is no cure. The only thing that changed was, I no longer was thought of as a lunatic for all of the various symptoms I suffered that didn't seem to connect to each other, and was able to get on medication to help the symptoms, sometimes, as there is no magic formula.  Some meds work one day, and the next they do not. I continue to take the cocktail of shots and pills daily, but I understand you have changed your treatment plan.  Do you see any hope that the mystery of autoimmune diseases will be solved anytime in the near future?

I am reading of many other choices, explained by many other voices advocating for patient education and patient support rather than just diagnosis and prescriptions.  I am living a change right now, having stopped the medication that I believed was pushing me deeper into depression. My course of disease is said to be benign (for now) and unpredictable ahead. I am taking good care of myself in terms of nutrition, and almost as well in terms of exercise. I will follow the research and share what I learn at my blog. Many respectable researchers are now questioning the "faulty immune system" theory of multiple sclerosis, leaning instead towards viewing it as a metabolic issue, dietary in its base, and rapidly increasing in numbers due to the typical North American menu.

I am a history teacher (among other subjects) and I know that American medicine has come far, but it is important to remember, with humility, its beginnings. Leeches for bloodletting, amputation, and lack of effective hygiene were the cause of many deaths during the civil war. Keeping patients in dirty, closed quarters led to complications then untreatable. Elizabeth Blackwell and Dorothea Dix brought fresh air, sunshine, and clean sheets to hospital beds long before doctors and researchers could see and understand microscopic bacteria. "If we do not learn from the past, we are doomed to repeat it," is often quoted. Medicine as a culture has to learn from the past. What we think is right today may be laughed at in the future. It is humbling to think that way, but it is honest.

My background is in education, not medicine. Injecting myself every night for four and a half years with a solution that burned and caused swelling, a solution that crossed my blood brain barrier and entered the central nervous system to act as a decoy and perhaps interrupt and capture some of the immune system's cells to keep them from harming the myelin around the nerves frightened me into a depression that required medical help to escape. Yet my doctors persisted in their belief that this was a good treatment for me. I didn't have the courage to speak up and tell them that I disagreed with their medical education. Many patients accept the doctor's education and training as a guarantee that it is right. People believed the doctors who applied leeches knew what they were doing. It is my belief that people can self-assess if given the freedom to do so. That is my purpose in publishing this book. 

Thank you,Terry! It's somewhat comforting to get information and emotional support from someone who has been there.  The diseases, I can deal with. The daily cocktail of meds and shots, I can deal with.  It's the medical community's attitude that very often perplexes me and frustrates me so it's a little validating to know I'm not the only one. I applaud Terry's ability to take her healthcare into her own hands and do what she feels is right for her. If you or someone you know has an autoimmune or metabolic illness, this book will be invaluable to you. Look up Terry at any or all of these links:

Terry Palardy
Amazon Author's Page: http://www.amazon.com/-/e/B00580PJ9Y
Website: www.beyondoldwindows.com
Blog: http://terrysthoughtsandthreads.blogspot.com
Facebook: Terry Crawford Palardy, and Terry's Thoughts and Threads, and Multiple Sclerosis, an Enigma
Twitter: @thoughtsthreads
Goodreads: http://www.goodreads.com/author/show/5057459.Terry_Crawford_Palardy


A very happy birthday shout to my big brother, Michael in Oklahoma.  No matter how young he thinks he is, he'll always be older than me! :-D

Hugs to everybody today! Pitchers and catchers report to training next week and I can see Spring on the horizon.  Sunny days are on the way :-D 

Inspiringly yours,

~ K

1 comment:

  1. Wow! It's been a month since you posted this, Kathy. Thank you for your continued support. I am enjoying the cool spring so far, and wishing you the same good weather!