2 posts tagged “Coach Dee”

Interview with Dr. Dee Kite, Author of “The Dumbest Things Smart People Say to Folks with MS” (Part II)

Posted March 16th, 2012 by

Dr. Dee Kite ("Coach Dee"), a PatientsLikeMe Member and Author of "The Dumbest Things Smart People Say to Folks with MS"

In Part I of our interview, we learned how Dee came to write The Dumbest Things Smart People Say to Folks with MS, how PatientsLikeMe’s MS Community was a critical part of her research and, most importantly, her “top three dumbest things” not to say.

Today we find out more about Dee’s personal journey with multiple sclerosis (MS) as well as what it’s like to be a life coach to MS patients.  Don’t miss this insightful interview with an MS patient who has focused her life around other MS patients.

You’re a life coach with a specialty in MS patients.  Tell us what kind of obstacles you see your MS clients facing – and ultimately overcoming.

I’ve always found it comforting, as do my clients, to know that we face similar obstacles. Since there are a lot of similarities I’ve developed a three-stage program to give us the structure we need to overcome the obstacles and live our best lives with MS: Regroup, Realign and Reinvent.

First, we’ve got to regroup. Consider Laurie. After her diagnosis there was so much happening: her grief, her family’s grief, recovering from optic neuritis and the steroids, learning how to give herself injections, deciding who she should and shouldn’t inform about her illness, trying different medications for different symptoms, dealing with the Dumb Things people said to her.

For Laurie, for most of us, this was a traumatic, overwhelming time. We dedicated an entire coaching session to regrouping. In other words, understanding every new obstacle in her life and creating a plan to take care of it. It wasn’t easy, but I’d been through it too, so Laurie knew she could depend on me to see her through. For my clients it’s a kind of “getting your feet back on the ground” stage, where I teach them how to move out of “overwhelm” to a sense of control. It’s a skill they can use for the rest of their lives.

In the first stage we’ve made a conscious effort to understand what living with MS means for us. In the second stage we realign to our new reality. The sooner, the better. When your car starts pulling or drifting away from a straight line, you know it’s out of alignment. When we begin learning to living with MS, we’re out of alignment. Without realizing it our minds drift to the dreams and the expectations we’ve always had. We’ve got to realign the way we look at the world, to let go of all our dreams and expectations in order to clear a space for stage three.

For Dave this was particularly challenging. Like Dave, often my client’s “story” has blocked his or her ability to realign. When Dave and I began coaching he focused on how this was “not where I’m supposed to be at 40 years old.” He focused on all the terrible things his ex-wife had done to him since the diagnosis, on all his mistakes, on everything that had already happened. He needed to realign. Simply put: don’t look back. I guide my clients to make a seismic shift by taking power away from their past.

When my clients have regrouped, they understand their disease and what needs to be done. When they realign, they let go of the past. In the process of realigning they learn that the quicker they let go of yesterday, the faster they can reinvent their new lives with MS…and the faster I help them create their new dreams and plans for a great life. This is much more an opportunity than an obstacle. And there is one tool my clients either love or hate but either way they’re always amazed at how well it works. They start living by this rule: “Don’t complain.  Ask for what you want.”

What’s the most important lesson you’ve learned in your own MS journey?

Dr. Dee Kite ("Coach Dee") with Her Dogs, Trixie and Coconina

That I had to change my definition of success. Before I was diagnosed, I had a rather cookie-cutter definition of success, with my plans lined up like a stack of dominoes. I’d get married, have kids, live in my dream house and be a strong, independent woman. I’d be a great wife, mother and professor. I’d entertain, have lots of friends, stay in great shape, play tennis. I had so many dominoes lined up that I could have tiled the kitchen floor.

And in slow motion, each domino crashed into the next. I’d get so tired that if I were starving and a plate of food was across the room I wouldn’t be able to get it. No energy meant no children, no travel, no job and no dinner parties. My herb garden shriveled. No more tennis because after a MS exacerbation I couldn’t see the ball. Stay in shape? I was so depressed I ate myself into stretch pants and [my husband] Scott’s t-shirts. Not such a great wife, family member, or any other role I’d envisioned. For a long time I just tried to stay sane and protect my energy level. It was not pretty.

I had to let go of my dreams and redefine success. Now it isn’t about the destination, it’s about the journey. I have had to become more like a pilot. While the flight plan is essential, the pilot has to continually monitor the weather, wind direction, wind speed, and make corrections along the way. Eighty percent of the time it’s about gauging the situation and making corrections. Success for someone like me who is living with MS, an unpredictable and debilitating disease, involves a lot of corrections to bring myself back on course. It’s been one heck of a flight to get here.


Interview with Dr. Dee Kite, Author of “The Dumbest Things Smart People Say to Folks with MS” (Part I)

Posted March 15th, 2012 by

Dr. Dee Kite ("Coach Dee"), a PatientsLikeMe Member and Author of "The Dumbest Things Smart People Say to Folks with MS"

Continuing our observance of MS Awareness Week, we’d like to introduce you to longtime PatientsLikeMe member Dr. Dee Kite (“CoachDee”), who has been living with multiple sclerosis (MS) for over 23 years.

A life coach who specializes in MS patients, Dee became interested in social awareness, or how best to talk and interact with a patient with MS.  What kinds of comments are insensitive, for example?  And what is that MS patients would love to hear instead?  Find out about that and more in our two-part interview with the author of The Dumbest Things Smart People Say to Folks with MS.

What led you to write the book – and how did PatientsLikeMe play a role?

When I was diagnosed with MS in 1995, I lived with a feeling of panic and struggled just to survive. I remember the first advice I received. Trudy, a woman brimming with confidence and good cheer, told me, “You may not be able to do much about MS, but you can have a positive attitude.”

I felt so ashamed because no matter how hard I tried, my attitude was NOT positive. Physically I was pretty much okay, because being blind in one eye and feeling like I had the flu every afternoon were not going to kill me. Emotionally I was not okay. I didn’t know what would happen next, and I was scared. I’d sneak out of the bedroom at night so my brand new husband, Scott, wouldn’t hear me cry.

Looking back over the 17 years I’ve had to tell others I have MS, I realize they too probably felt sadness and fear. But instead of openly admitting this, most preferred to tell me what I should do to cure my disease or alleviate symptoms. Katy said I should ride horses because “Shelia” had been cured when she rode.  Another person urged me to rush out and be stung by bees.  A sure cure!

I continued to receive prescriptions for off-the-grid MS “cures” when what I really wanted was just simple conversation. I wondered what others living with MS were hearing. I thought if they were having similar experiences it might be a helpful topic to write about on my website, MyMSCoach.com. So I posted this question in the PatientsLikeMe MS forum:  “I’m trying to collect the worst things people have said to us so I can help educate them about what we really need to hear.  Has anyone said something to you that didn’t help or even made you feel worse?”

The Dumbest Things Smart People Say to Folks with MS, a Book That Was Conceived at PatientsLikeMe

The floodgates opened, and PatientsLikeMe members responded (and continue to respond years later!). The thread generated such passionate responses I was amazed. Some things people had heard were so shocking I gasped. Others were so sad, I cried.

While I had just been thinking of an interesting topic for an article, the patients who were sick and tired of thoughtless comments saw an opportunity to be heard. One woman said, “You need to write a book about this!” Another patient said, “Yeah! 1,001 Things Not to Say to Us!” So it all began right here on PatientsLikeMe.

If you had to choose, what are the top three dumbest things you could say to someone with MS?

It’s hard to choose three, because there are so many dumb things! Here are three “classics” because most of us have heard them:

  • You don’t look sick,
  • _______ (insert name) died from MS
  • _______ (insert person) has MS and is doing so much better than you.

Here’s another great example of a dumb thing.  Brenda parked in a handicapped space. A mother and her kids ran up to her shouting, “That is the most inconsiderate thing you can do! I have a handicapped husband!” Brenda turned and said, “I have MS.”  The woman practically growled. “There’s nothing wrong with you.”

Brenda just got back into her car and drove home. She didn’t know what to do. And she wondered, what does handicapped look like? With MS there is no way to know.  It can be so demoralizing to always be in pain and then to be continuously wounded emotionally by other people’s perceptions and projections. That’s what The Dumbest Things Smart People Say to Folks with MS is all about, how the lack of awareness can deeply hurt us. And a lot of times it’s somebody we love.

Read Part II of our interview with Dee.