Beyond MS: Your Best Life

By Rosalie Richards

If you have MS you may think that the good life is over—but it doesn’t have to be that way! Beyond MS—Your Best Life explains 7 simple choices you may not have ever thought about. Learn how to make seven conscious decisions—decisions that turn into a simple plan for reaching your best life without letting MS take over.
Seven choices and 21 days are all you need. It’s all about choices!
In this book discover—
•How to change the subject from “Poor you!” to “Wow, your life is amazing!”—
•The secret to one form of meditation that you already do (think ‘daydream’)—
•The power of living your bucket list (kayak—ride a camel—witness a sunrise)—
•The huge satisfaction of making a difference in your corner of the world— . . . and other simple and powerful life-changing choices that will shift your life from being captured and held down by MS to Living Your Best Life
Beyond MS—Your Best Life is for those living with MS or with any great challenge that threatens to end the hope of a good life.
The author, Rosalie Richards, has MS, has faced these challenges, and has found these strategies to work.
The strategies are presented in a clear, no-nonsense and humorous way—step-by-step—so that they can immediately be put into action. Also included are stories of 21 people living with MS, each with a message.

• Language: English
• Publisher: Rosalie Richards
• Release date: May 7, 2014
• ISBN: 9781630410513

Rosalie Richards

Rosalie is an Episcopal priest with a Ph.D. from the University of Texas School of Public Health and an M.S.W. from Columbia University, and those disciplines inform this work. She enjoys yoga, reading and exploring spirituality. She lives in the Great North Woods of northern New Hampshire with her wonderful and creative daughter (who has a blog on nutritious living and recipes).Seven years after Rosalie was diagnosed with the possibility of MS, she traveled to Egypt and rode a camel along the rocky outcrops of Mount Sinai. After the diagnosis was confirmed, Rosalie’s bucket list achievements have included learning to kayak and visiting the Incan ruins at Ingapirca, Ecuador. Currently Rosalie and her daughter are training for the Color Run.More information about Rosalie can be found on her webpage www.rosalierichards.com.

Book preview

My Story

MS not only wasn’t what I planned for—it was never even considered as a possibility. I always lived what I considered to be a charmed life. So—MS came as a bad surprise.

It was 2004, I was 55 and busy. I worked at two churches that were an hour’s drive away from my home. Stopping in at a Burger King one day in search of a quick meal, I noticed that my left hand, the one you use to hand your cash, and receive your food, wasn’t obeying me as easily as I expected. It was a little clumsy. That was curious. I mentioned it to my husband, a doctor, and he arranged for an MRI.

I personally thought it was humorous. I wasn’t worried; (I really lived a charmed life, remember?)—this would go away. My body wasn’t vulnerable like other people’s bodies seemed to be. I secretly believed my attitude kept me protected. I felt healthy. I trusted my body. It had never let me down. Even when my body succumbed to the realities of illnesses and other vulnerabilities, I seemed to always get beyond them without permanent damage.

Then…I received the MRI results. The narrative ended with the words probably MS. My family doctor interpreted the reading for me: It’s the real thing, you’ve got it, he said.

Life shut down. I resigned my parish work—and worse, I had to announce that I had MS. I hated seeing pity in people’s eyes. Maybe there was fear, too. What was that about? It was excruciating to hear whatever was in their well-meaning words. I would go home and crawl into myself after these conversations.

Life seemed over. Friends called, I would keep up conversations—but it felt like I was in prison, talking to them from behind one of those visiting booths with Plexiglas and a phone. I knew that when the phone was hung up, that my friends would get to get up and go on with their lives after our conversations—but I was stuck with the life sentence of MS.

I hated it.

A year later I was tested for chronic Lyme Disease and –I passed the test! The diagnosis changed. Strange as it sounds, I was thrilled to hear I had Lyme Disease. If you have MS you know what I mean.

I resumed working, and it wasn’t until 2011, after I set up a meeting with my church leaders to tell them that I was going to take a year off to write a book (the year of the dream, the year to write the book, I had named it), that I got the results of my now yearly MRI: MS. Again. Damn.

Maybe I was more ready now, but my world came crashing down all the same.

I made arrangements for the planned year away, only it was, I knew, forever. I wouldn’t return to work, couldn’t physically keep up the pace. Besides, who knew if I would even be walking in a year? Meanwhile I started taking the new drug in pill form—Gilenya, which I eventually replaced with Tecfidora. I began trying alternative therapies. I added Low Dose Naltrexone to my regimen.

But that is jumping ahead.

In 2011 I moved, and wrote the book I had planned, all while in a deep funk. MS had broken my spirit.

One day I saw a book advertized online: The MS Recovery Diet. I kept rereading that word: Recovery!—and the word referred to MS! I read that book, then others. I found that the stories were as healing to me as the new hope of recovery.

That’s how this book began. I started collecting stories to inspire people with MS.

I myself needed every story in this book. I also figured that you might need them, which became my excuse for interviewing the magnificent people whose stories you will read.

Every story resounded in my mind, my thoughts, my psyche, my life—for over a year as I collected them. Every one brought me further on this path, closer to the place where I now am.

I am now Beyond MS—for me that means that my life is as wonderful now as it ever has been. And I live with MS. Go figure!

I am here to say that there is life beyond MS. This disease once seemed to me the cruelest initiation that I could bear—but then—I found a place beyond that life sentence. You can get beyond it, and Beyond MS is a wonderful place to be.

I know it is possible. It involves choices—that you can make.

This book is for you, to help you find your version of Beyond MS. Each story in this book was told, every interview was given, with the hope and intention that you will read it and find what you need. May your life always and forever be beyond MS.

Introduction

If you just got diagnosed with Multiple Sclerosis, you may think that your life, the good life, the one with enviable choices, is over. That is what I thought. That is the farthest thing from the truth. With the experience of MS in your life you are now equipped to take hold of your best life. It is a matter of seeing the choices and making them.

This book is about living Beyond MS. It is about living your nest life without letting MS take over. It is about making choices, every day, and finding that life.

This book is ongoing love and wisdom that people share with me. I consider it a work in progress, just like our lives are. I also consider it a surprise, ditto about our lives.

This is what I mean.

I planned to write a book, just not this one.

I started off to interview seven people to talk to me about MS and their stories and how they live their lives beyond MS, without letting MS take over.

The stories kept coming and eventually 21 people with MS in their lives shared thoughts, stories and wisdom.

When I began interviews I never planned to write this book. It emerged indirectly. No one said in their stories Do This in order to live beyond MS. No one said, This is my game plan (though people stressed two parts of the plan, positivity and humor).

The book emerged through the stories.

If I were to boil down all that I have observed and learned through the conversations I had with people who live with MS and with providers, the Plan (Part 1 in this book) is what I find.

The stories, the interviews, are found in Part 2. In my experience the stories are equally or more important for those of us with MS in our lives, because they show how each of us reaches beyond MS in varied, wildly different ways, and that is important to know. We don’t have to be different than we are today in order to live beyond MS. We just have to be the unique person that each of us is—AND we have to make choices.

For each of us the choices will have different importance. When I talked with people who inspired this book, they didn’t all share the same insights. Instead, different people emphasized different parts of this game plan in their lives. One person finds that living her passion tips the scales from behind MS to beyond it. Another person finds that MS is a doorway to wisdom and spirituality that brings her beyond MS. Another person is fascinated by the exploration of scientific theories, another finds humor to be the strongest ingredient in her life beyond MS, another meets the world by giving support to others—all of these pieces of wisdom enter into this game plan. If each person interviewed were to write this book, it would be a completely different plan—but the combined wisdom and life of each person is found here.

After I lived for over a year with the stories and insights that people shared with me I wondered: how can I express this for others? Could I put that combined wisdom into words? Part 1: The Plan is what I came up with. Read it; apply what makes sense in your life. Make it your own, it is YOUR story of Beyond MS. When you are through with that section, read the stories and find out how people like you and like me are living our best life beyond MS without letting MS take over.

Part 1: The Plan

Getting Started

Hi. We are in the same boat. MS impacts our lives. You either have MS or you are related to/spend time with/love somebody with MS.

Let’s say you have it. In that case, you might (rightly) hate it. If you are like me, you think that your life plan just imploded. Your life had ups and downs—but it more or less was going along a path you were familiar with. Like everyone else’s plan it included major pointers: be born, become a child, a young adult, an older adult, retire, enter old age, and then, a long time from now, die. There are variables like jobs, relationships, finances, locations.

Then you were told you have MS. Wherever you were on your life plan, young adult, older adult, wherever, suddenly life as you planned it…stops.

Again, if you are like me you wonder: is there anything beyond MS? Anything worthwhile?

When you try to imagine your life trajectory this is what you may imagine before you: you will lose your independence, your health will completely vanish, and all kinds of unimaginable horrors await you.

You know what?

THAT’S NOT TRUE. IT ISN’T THAT WAY.

Life will go on. Your life. And—this is the stunner—your life can be better—not just as good—better.

After your diagnosis with MS you still can own your life. You do not have to give it up to MS.

How, you might ask?

It is simple. It’s not always going to be easy, but it IS going to be simple. You can do it.

This book is distilled wisdom that I learned from people who didn’t stop living their lives when they got the MS diagnosis. Their lives didn’t get easier, but they became better. That is why this book is called Beyond MS: Your Best Life.

It is simple to achieve, because what it takes to get there has been in your life all along, but you may not have been aware of it. You are going to uncover, and then focus on, abilities that will help you navigate whatever is ahead.

Once you begin this, though, you will see things you never may have noticed before. I call these insights Beyond MS Choices. They are choices that you will make and they will enable you to negotiate MS in any form.

This book charts 7 Beyond MS Choices you may not have seen before. Look for them. Use them. They will get you where you want to go, beyond MS. You need to internalize them so that when you meet an MS challenge—or any life challenge—you can use them to go in the direction you wish, to get beyond whatever the challenge is.

That’s not all you need. You need a game plan for internalizing the choices. This book is about being conscious, using your awareness and willpower to move your life where you wish. You may want to make your own plan, or let it develop at its own pace.

Maybe you would like to just jump in and get started, and you would like a ready-made chart. For you, I have included a three-week game plan at the end of this section. If you follow this plan, 21 days from now you will have internalized Beyond MS to the point of habit. If you want to tweak the plan to your tastes, do it—it is your life, and it is your MS, make it work for you!

PS: your life beyond MS will now be clearer, more focused, more directed than it was before MS. Your life beyond MS now has what it takes to be your best life.

Are you ready? Here is all you have to do to get going.

Turn to the next page.

That’s all you have to do to get going.

You are in charge of your trip. That means, put the book down whenever you want. Take a break whenever you need one. Day dream. Have a glass of iced tea or a cup of coffee. Read this book at your own pace. This is your journey. Take