MS as teacher

Last week, I had a lovely lunch with Shulamit Lando, a psychotherapist and personal life coach who has had MS for the past 20 years (check out her website for some good info).  One of the most interesting things she said to me was that one of her primary focuses in working with people coping with MS and other diseases is to help them shift their perspective to realize that the disease is teaching them something and they need to learn from it rather than fighting it. Once they do that, they can begin to really change and embrace who they are now instead of fighting to hold on to who they were before they got sick.

I thought her approach was a good one, so came to the blog to write about it and found that I'd already started the post before I met with her!

In the middle of January, I had written:
Someone asked me recently how I relate to my MS. My response was that I view MS as my teacher, albeit one with awful pedagogical methods, but a teacher none the less. In every episode or symptom is the potential to learn about myself. Every aspect of MS is trying to teach me a lesson, and it's just up to me to figure out what it is. I don't know if the MS will go away when I've learned the lesson, but I know that I am much happier and centered.


MS is the motivation to move me forward in my spiritual development. I think that if I didn't have MS, I would still be working at Kinko's trying to figure out how to be a business person and not really understanding why I wasn't succeeding. With MS, I've become a healer and am really able to make a difference in people's lives.

I wrote it, saved it to be edited, and forgot about it.

It's funny how the world works sometimes. I can't figure out if God was trying to give me a clear message or if I was just in tune with the flow of energy in the Universe. In either case, it's helpful to figure out how MS can be your teacher.

I'm curious if other people view MS this way and what are the lessons they feel MS has taught them?

Praise your part in your MS

Photo (c) Aaron Askanase (yes, this is my daughter!)

I think there are many lessons to be learned from the work of Carol Dweck, a professor of Social psychology at Stanford. Her work on the effects of praise on children have influenced my thinking (and my parenting).

She divides praise (and criticism) into two categories: person/trait praise and process praise. In person praise, the child is praised for a trait such as, "wow, you did the puzzle, you must be very smart!". In process praise, the child is praised for their effort, "wow, you worked really hard to finish that puzzle!". What she found is that children who receive process based praise were more likely to work harder, seek greater challenges, and overcome adversity better. The children who received trait based praise became more easily frustrated, and were more likely to seek simpler challenges in which they could succeed more easily.

In my opinion, the most important part is that the kids who were praised for something within their control worked harder. When I praise my daughter for effort, she knows that to succeed she just needs to work harder. If I praise her for being smart, she has no idea how to be smarter. In fact, there is no way to be smarter, so I haven't given her any tools or hints on how to succeed. Dweck points out that children who are praised for being smart (or any trait) often feel dumb if they fail at a task. The trait based praise leads kids into a dead-end: they are judging themselves on a standard over which they have no control.

These standards can be used for how we describe MS. It can either be a trait, something that is fixed, over which we have no power. Or it can be a process, one in which we have a great deal of influence.

It's very important to conceptualize MS in a way that includes our own influence on the course of the disease. I often think of MS as a condition of my life. It's not a disease that is afflicting me, but rather an aspect of who I am. Just like I wear glasses, I have MS. For my bad eyesight, I know that I can wear glasses or do eye exercises to help me improve. For my MS, I know that there are things I can do to make it worse and things to make it better. And those things are firmly in my control.

When I evaluate my MS, I don't measure it according to how many times I felt symptoms or how bad they were. Rather, I measure it according to what I did to effect the condition: did I do my exercises? Did I eat right? Did I take my drugs? Did I sleep enough? Have I meditated? I know that all of those things are in my power, so that's what I focus on. I know that there will be setbacks or problems with my body, but if I look at MS in a process way, I will always be able to find a way to continue doing everything in my power to make myself healthy.

The hardest question

Photo courtesy of thehoneybunny

Last night I found my wife's chocolate stash and decided to help myself to a piece. I knew it wasn't good for me, but after thinking about it for a moment I took a piece anyway. As if to prove a point, I got an instant headache.

What struck me was the thought process: I know this is bad for me and I'm going to do it anyway. I've written before about the urge to self-destruction, but this was a totally different energy. I wasn't doing something unconsciously or without realizing it was bad for me, I was choosing it intentionally. Why would I do that?

It led me to the hardest question: do I want to be sick? Is there some benefit to myself that makes me choose to be sick?

My daughter looked up at me the other day (when she was home sick from Kindergarten) and said: "Being sick is fun, I get to stay home with mommy and daddy, draw all day, and play on the computer." I stared at her for a moment before I said anything. I started looking back at my life and remembering the many times when I had the same reaction. Now I have to start looking at my life now and seeing if I am having that same reaction.

And then I have to ask myself the hardest question of all: do I enjoy being sick? And if the answer is "yes" than I know what my next stage of spiritual growth has to be.

Surrender and Progress

Picture by Aaron Askanase

I was recently contacted by someone who was newly diagnosed with MS. Her main question to me was if her anger at the diagnosis would pass. I reassured her that it would, but let her know that we all have to find our own peace with the condition.

It got me thinking in two directions. The first is that I firmly believe that anger is best dealt with by dealing with fear. Fear causes the fight or flight reaction and the extra energy easily turns into anger. A new diagnosis is very scary. It puts the future into very uncertain terms, some of which can be very debilitating. My advice as a healer is always to look at what scares someone about the potential futures and spend time with the fear.

My second reaction was realizing that I'm not sure that I went through a long period of anger about the diagnosis. I was 26 when I got diagnosed and really had no understanding of MS at all. I didn't even know I should be scared of it, so I just rolled with it. I had no idea how it might effect my life, so wasn't sure how to react to it. There are times that I get angry about it, but they pass relatively quickly.

I was talking to my wife about this, and she was remembering her anger at blowing out her knees while training for a marathon years ago. She was so angry that she was not going to be able to run the marathon, and angry that she couldn't really walk for about three months.  My wife is a very goal oriented person with a high drive to succeed. I'm not. When the MS limits me, I just find something else to do. When she gets stymied, the energy just builds up until she finds another way to succeed or she gets really angry.

For me, having MS meant that because of the heat, I couldn't go to the rain forest in Peru on my honeymoon (something I'd always wanted to do). I thought it would have been amazing to go, but we just found other places to go, no big deal. For a very goal oriented person, I would think that would have been very frustrating.

It's hard for me to determine when I started to be this way, but my life is a careful balance of surrender and progress. I work very hard on myself to heal and to be a good healer, but when things change for me then I surrender to the change and adjust. I have an innate faith in God, but I don't know if that is a result of the MS or if it was just accentuated by it. I learned very early on that there were things in this world that were more powerful than I was, and that I just needed to surrender to those things. The difficulty is knowing which things should be struggled against, and which things should be accepted.

I think it's like a stream coming towards me. If I fight it, it builds up and overwhelms me (and even a small stream can do this if allowed to). If I completely surrender, then I get washed away. But if I accept the force coming towards me and change with it's influence, then I can stand in the stream and maintain myself.

I think the anger about MS is that resistance to the change. MS is so much bigger than we are, but we have so much influence over how it effects us and how we react to it. Dealing with the anger is a question of learning to live with those changes, and learning to be at peace with the uncertainty MS brings.

I'd like to hear from you about how you've dealt with your anger, and what you've found most effective.

The Bad Food Cycle

Photo by Chotda

I am an acupuncturist. Part of my training and my work with people involves dietary advise, so I've learned a lot about food from both a western and Chinese perspective. But I'm not sure it's helped me that much. I have a pretty good idea which foods are good to eat and which are bad for me based on the theory I've learned, and on watching my body's reactions to what I put in my mouth as I'm very reactive to what I eat. If I have a bowl of soy ice cream (unfortunately, I haven't had the real stuff in years), by the time I'm finished my nose will be stuffy. But I often get in a very bad food cycle.

I've never been much good at cooking for myself. I'm actually a fairly decent cook, but I can never think of what to make. My wife has the gift of looking at a recipe and knowing exactly how it will taste. I look at a recipe, even for things I've cooked many times, and it always looks like a list of ingredients to me. I can look at a fridge full of vegetables and have no idea what to cook. So all too often, I'll make pasta because it's easy and known. Or I'll pull out some instant food from the freezer which really isn't good for me.

To put this cycle in energetic terms: food nourishes me and I'm not very good at nourishing myself. I'm much better at forgetting to eat or just eating junk, which then makes me feel poorly, and it makes me crave more junk.

It's the sugar cycle: when you eat good food, you crave what's needed for your body. When you eat sugar, you crave more sugar. Sugar destroys the body's ability to know what foods to eat because it overwhelms all other cravings.

When I'm losing myself in the self-hate, I eat badly and don't nourish myself with good food. Then the bad food wipes out my cravings for good foods and leaves only cravings for more junk. So I eat more junk, which reinforces the negative cycle. And so on into more self-destruction. At that point, I can start beating myself up for not eating well, so I can do the self-hate on another level as well because I know so much about food I really know how badly I'm eating.

So how to break the cycle? It's not easy. The first step is to be aware of it. That the food choices I make are rooted in the self-hate, not in self-nourishment. At that point, it's identifying the foods that create the downward spiral. Decreasing sugar intake, and eliminating it if possible.

And from then on, it's mostly a question of will. Can I get myself to make one good meal or try to get myself to eat one or two good foods. Often, I have to force myself to eat a good food just to try to get in the habit.

Eating is something we do all the time, so it's a good way to know how we are treating ourselves. It's also a great way to feel guilty all the time and beat ourselves up for how we eat. I don't advocate the guilt. Nor do I recommend getting comfortable with terrible food choices. But like all things, this is an opportunity to negotiate with our self-hate and try to learn to nourish ourselves both physically and spiritually.

Photo by Wespionage

On fears for the future

I received a letter today from someone who was asking me about the possibility that taking Copaxone can help reverse existing damage and prevent new damage. I am posting my response because I think these questions are something we all face:

My read on your questions is that you are scared about the possibility of long term disabilities and are wondering if copaxone helps to clear up old damage. Is that a correct read? My answer is many layered and not an easy one.

Over the past 20 years of having MS, I've had to learn to live with the fear that today might be the last day I walk. I could wake up in the morning and find that my legs no longer work. Or the fear that whatever transient thing I am feeling today may be with me for the rest of my life.

Copaxone is a negative drug, like all MS drugs: if nothing happens then it's working. But, at the same time, nothing might be happening in any case so the drug might be having no effect, so there is no way to really know. I hate to say it, but these are the fears and the uncertainties that the condition brings. I could tell you different, but it wouldn't be true.

I spend a lot of time working on my fears, as I'm a person who was completely lost in fear for much of my life. Knowing that these fears are real means that I am aware of them and then they don't have control over me. I suspect that another person (who I have yet to meet) would use these fears to take every moment as special knowing that tomorrow everything might change.

For me, I use the fears to help propel me forward on my person growth. I know that my spirit is very tied up with MS, so I try to use it as a tool to give me clues as to the growth I need to do. But I suspect everyone forms a different relationship with the fear.

I recommend not trying to get to any point, but spend time with the fear and then see what relationship develops, just making sure that the fear is acknowledged without letting it take control.

How to explain MS to children

I have two children and have had to think a lot about how to approach the topic of MS with them, so I thought I'd share how I approach the issue. One caveat is that I treat each discussion with them as unique and don't assume that what I thought they understood the talk before is how they understand it now. They are growing and their minds are developing, and I have to respect that their perspective changes all the time. So what I can share is my approach to the discussion, not the discussion itself.

The first thing to keep in mind is that kids are really, really sensitive. No matter what you say to them, they will hear your emotions underneath. If you are scared of your MS, they will be scared of MS. If you are scared to talk to them about it, they will think MS is scary. So work on yourself first. If you've been diagnosed, don't wait until you are in the middle of an episode to bring it up. Look for opportunities to bring it up. For me, my kids see me take my shot every morning, so we talk about it then. Which brings me to my next point:

Make it a regular topic of conversation in the house. Kids will figure out that MS is something shameful if it's always talked about in whispers and behind doors. They'll hear the word "MS" and think it's a dirty family secret. If it's something you talk about with them around, it gives them a chance to ask their questions and know it's just a fact of life, not something they have to feel bad about or be scared of.

My mother, Dr. Phyllis Silverman, is an expert in bereavement. One of her specialties is how children deal with the loss of a parent. I grew up in a house where death was talked about freely. When an older friend of mine died of leukemia when I was five, I went to the funeral and was part of the discussion about death. I wasn't scarred by the experience, but grew from it. There was nothing hidden from me. Dr. Silverman has written an excellent book entitled Never Too Young To Know about children and grief, which I highly recommend (and not just because she's my mom). When things are in the open, they are much less scary, and kids can feel free to ask questions about them.

My children have an amazing ability to make things up. I worry that they will make things up about MS if they only know part of the story, so I try to keep them in the loop. I think it's important to answer the question the child is actually asking. Often, my kids will ask things that seem to have a much greater meaning, but are actually much simpler.

I had an episode last year when my leg went numb and weak. I explained to my daughter that my leg was sick with MS. She asked me if I would be able to go out to the playground with her again. My reaction was one of fear that maybe I wouldn't and I wanted to explain to her about the unpredictability of MS. Then I stopped myself, and asked her what she meant by "again"? She said that she'd went this morning and wanted to go again, could I go with her? Not today I said, and she walked away content, though disappointed. I had answered her question, not what I thought she'd meant.

I also look for how MS effects their lives. When I take my shot every morning, my kids think nothing of it because they got their shots too, and they know that we both take shots so we don't get sick. I put it into their language, spoken to the questions they have, so their understanding of the disease can grow as they do.

I think that the only secret: talk to your kids. Give them room to ask their questions and then actually answer them. Keep your emotions neutral so your kid can have their own reaction without being influenced by your emotions. I make use of "Emotional Coaching" techniques to help them deal with their emotions. Kids are incredibly strong, and have a resilience which is completely amazing. Don't sell them short.

I didn't have kids when I was first diagnosed, but I think this must be a much harder discussion to have if you've been diagnosed and are in the middle of your first episode when you already have kids. My advice would be to give yourself space to deal with yourself, while give your kids space to digest the change.

My basic advice: just talk. The more you talk, the easier it will get to say things, and the easier it will be for the children's understanding of MS to change and grow as they do. I've seen my understanding and relationship to my MS grows and change too, so my kids need to be in the conversation so we can all grow together, not apart.

This is what's worked for me. What's worked for you?

August 16, 2012 - a quick post-script
One of the lessons I've had to learn as an adult, and have tried to teach my children is that things take practice. We never gets things right the first time, and rarely get them right on the 20th time either. My kids know that if you want to get good at something, you need to practice. It's true about talking to kids about MS, it takes practice. Don't assume that you can do it once and be done with it, or that it will go easily or well the first time. But the more you do it, the easier and better it becomes.