Monday, December 13, 2010

Involving Children in MS

As part of my recent move back to the US, we stayed with my parents for two months and I picked up a wonderful idea for involving kids with my MS medicine.

My father is diabetic and checks his blood sugar before every meal. My children followed him up to his room during the first week we were there and started asking him all sorts of questions about how the procedure. Soon after, I realized that they were going up to his room every time he was checking his blood sugar and getting angry if he didn't include them in it. He had divided up the tasks involved between my two girls and involved them in it. When my nephew came to visit, they eagerly brought him up with them to show him how Grandpa was "doing his numbers".

I quickly adapted this excellent idea for myself. I was used to taking my Copaxone when the kids were at school, so I shifted it to before school. Every morning, one child unscrews the autoject and one tears open the alcohol pad. On opens the package to the needle (still well capped), and I insert it into the autoject. They watch the indicator to see when it's done, then hand me a cotton ball. One gets to throw the capped needle into sharps container and the other throws out the trash. The love it.

The kids know that the medicine helps to keep me healthy, and they love being able to help me out with it. It's an easy way to demystify the whole process, give them a sense of ownership over it, and keep the discussion of MS open within the household. Plus it's a fun thing we can all do together!

Monday, November 1, 2010


A barrier to spiritual development I've been encountering in myself and have seen in others is Self-pity. It's the attitude of a person that there is something so wrong with themselves that it excuses their behavior. It's the woe-is-me attitude that prevents a person from growing.

For some, it's the one-upmanship of illness and disability: The "oh yeah, well you don't know pain like I know pain" type of attitude, but it's not said as a toughness thing, but rather as a boast of how pathetic one is.

For some, it's a stumbling block: "I can't ever do that because I'm too sick to." This is not the honest acknowledgment of ability, but the self-imposition of limitation.

For some, it's a barrier to relationship: "You can't understand me because you don't know what it's like to [fill in blank with symptom]." This is the withdrawal from a relationship by assuming a person won't understand and thereby not sharing and communicating and giving the person a chance to understand. It's a form of contempt for another where one assumes that they are better than the other and thereby stop taking the other seriously.

My approach to self-pity follows two paths. The first is awareness. When I realize I'm doing it, I can stop. I listen to my inner voice and when I hear myself saying things that reflect self-pity, I pay attention to how I'm feeling. I can then know to look for the words or the feelings to identify the self-pity. Sometimes this alone is enough to head it off.

The second approach is to make fun of myself for it: "oh, poor, poor me. There is no one more pathetic than me." I reinforce and accentuate the feeling. By putting energy into it, I react more strongly to it and work it through. Sometimes I get really silly in making fun of myself. The internal laughter transforms the darkness of the self-pity and helps me to see how little I like myself when the self-pity is in control, and I start to change.

Self-pity is a cycle that builds and spins on itself. It's like a whirlpool that carries one around and around without allowing motion anywhere but down. The longer one is stuck in it, the more powerful it becomes.

What are your tricks for breaking out of self-pity?

photo courtesy of DOH4

Tuesday, June 22, 2010

Mislabeling emtions

In reading Stumbling on Happiness, I found several ideas that I think are relevant to MS.

On page 63, he writes that mislabeling emotions is a very common and easy thing to do.

When I think back on my own experience, I spent many years lost in fear without even being aware that I was scared. It took a very perceptive person to point out to me that I was frightened before I could even begin to perceive it. When I first became aware of it, I didn't even feel scared, but instead I just felt a vibration in my guts and my body would shake.

It then took years to be able to actually feel scared and properly identify the emotion. Even now, I sometimes only know I'm scared because I see that I'm reacting poorly to things and realize that my fear must be taking control. I have to sit and meditate to be able to relax enough to feel the fear, which allows me to move beyond it.

I wonder if there are commonalities among people with MS and if we commonly mislabel the same emotions? This could help lead us to the patterns of thought that lead to the disease.

Has anyone noticed any patterns of mislabeled emotions in their own lives?

Tuesday, June 15, 2010

Review: Stumbling on Happiness

I recently read a book call Stumbling on Happiness by Daniel Todd Gilbert (click on image above for a link to the book) and it stimulated some thoughts on MS. This post is a quick summary of the book, and the next few posts will be a few ideas that I think are relevant to MS.

The basic premise of the book is that we often mis-remember important emotions and events, and so when we envision our future to make choices, we make those choices on faulty information. There are two main problems with memory. The first is that we remember only a small part of our actual experience, so when we project into the future, we have to fill in the gaps with our imagination. The second is that we tend to retell painful stories in ways that make them less painful, so we don't actually remember how we felt during traumatic events.

The problem with our imagination is that it bases our projected future upon our present state of being, or on our poor memories of the past, both of which end up being badly flawed guesses as to what life will be like in our futures. This leads to problems in making choices about our future, especially, he writes, when it comes to happiness. We get stuck repeating bad choices and failing to move forward with our lives.

His conclusion is that we should make our future choices based on what we hear from other people who are doing, right now, what we are thinking about doing in the future. For instance, if I am thinking about seeing a movie, I shouldn't ask someone who saw it last week, I should go to the theater and ask people immediately as they walk out of the movie I'm thinking of seeing. He recommends doing something like that for pretty much all of our important decisions.

I enjoyed the book, but I didn't much care for his sense of humor. I felt like I was trapped at dinner with a distant relative who made jokes every third sentence whether they were funny or not, but what he said was interesting enough to make me overlook it. I also disagree with his conclusion that though we all want to think of ourselves as unique, we are all very similar. As I've gotten older, I've realized more and more how different people are.

Overall, I think that there are a lot of good thoughts in the book, and he does a good job of presenting a wide range of psychological research in a very accessible form.

Tuesday, June 8, 2010

Thinking yourself to health

In my last post, I wrote about a recent article on how brains change and grow in response to how and what we think. In many ways, this should come as no surprise. Our muscles and bones also grow in response to use. When we lift weights, we gain more muscle. When we put more stress on our bones, they get stronger. Martial artists have a long practice of training by hitting walls or sand repeatedly. Each impact signals the body to grow stronger bones and tougher skin. Heel spurs are the result of impacts on the heel when we walk which results in dysfunctional and painful bone growth. Same process with two very different results.

MS is an auto-immune disease which means we cause it ourselves. Given what we know about bone and muscle growth, the question arises if there is something in our own actions that causes the dysfunction in our immune systems? Given what the recent study revealed about brains following the same pattern but in response to the way we think, are there patterns of thought which lead to a worsening or improvement in our MS? Do these patterns of thought cause physical changes in the brain that alter our symptoms? And if they do, how does one change those patterns of thought to lead to a healthier brain?

My approach is that the dysfunctional patterns of thought revolve around self-hate, fear, and giving away power. I would also add a lack of connection to self and to God. Over time, they pull the brain in the wrong direction and encourage a dysfunctional immune system.

One thing that the article really stressed was that the changes in the brain take years to occur. Cognitive  reserve, their term for mental strength, is developed over a lifetime. The article also stated that mental strengthening is the result of continual effort and focus – finding challenges and raising a mental sweat in overcoming them. This means that any changes in the course of our MS from this approach take a long period of concerted effort to show any results. Simplified, this all means to have patience with yourself.

What do you think? Are there patterns of your thinking that lead you to get healthier or sicker?

Photo courtesy of LuMaxArt

Tuesday, June 1, 2010

Flexing your Brain

The lead article in the fall 2009 issue of the Rocky Mountain MS society's magazine InforMS is about changes in the brains of London cab drivers while they learn their craft. In this blog post, I will summarize the article and the conclusions it draws based on this research. In my next post, I will propose another direction the research can take us and how that might help people with MS.

Studies show that as new drivers go through an intensive three year training program to memorize all streets, attractions, and restaurants in central London, the parts of their brains thought to be connected to navigation got bigger and bigger. The study shows that our brains continue to change and develop over time in response to what we do and think. The article states:
“This research on the cab drivers adds to our growing understanding that our brains are sculpted by what we learn and experience throughout our lifetime. We know that our brains influence what we do with our lives. Now we are beginning to appreciate the converse: what we do with our lives influences our brains.” (p. 3)
The article continues that our brains ability to grow and change is called “Cognitive reserve”. Which is defined as "...a measure of brain fitness and flexibility. Like muscles, brains become more flexible if they are regularly challenged.” (p. 4) Brains with lots of cognitive reserve have an easier time repairing themselves.

The article continues to talk about ways to improve one's cognitive reserve, of which the best ways are physical and mental exercise. Physical exercise improves blood flow to the brain and reduces stress. As for mental exercise, the article states that “Apparently, what really stimulates the brain to learn and grow is more a function of how, and how much you are challenged to learn, not what you learn. “ (p. 5) As with physical exercise, the amount of benefit you receive is directly related to the amount of effort you expend. If you focus on a mental challenge, you will build mental muscle.

The Rocky Mountain MS society does wonderful work and also does a lot of work with examining how complimentary and alternative medicine can help people with MS – something near and dear to my heart. I recommend checking out their website and subscribing to their newsletters and quarterly magazine. As an addendum to this post, I would recommend checking out the bibliography on the brain Article as well.

Saturday, April 3, 2010

Fizz to Solidity: A technique for feeling the world

I was lying in bed the other night waiting to fall asleep when I starting paying attention to my sensations. Along my back and torso, I could feel the bed as a solid object, pressing into me. But along my legs and feet, it felt like wind. Instead of feeling the solidity of the bed, I felt like my legs were resting on a the top of the foam that bubbles to the top of a freshly poured soda.

I knew that this type of diffuse sensation is not uncommon with MS, so I didn't try to do anything about it. But it was an interesting sensation, so I focused on it without moving my legs or trying to change it in any way. That's when it got really interesting. A few minutes later the sensation changed from fizz to concrete reality. Instead of the foam sensation, I felt the bed solidly underneath me pushing back on the weight of my body lying there.

I didn't think much of it and went to sleep. The next night, I tried it again. No intent to change, no desire to actually do anything other than pay attention to the actual sensation my legs were giving me. Again I felt the fizz and again it changed to solidity, but quicker than the first time. I did that for a few days and three nights ago, when I lay down, I only felt solidity, no fizz at all.

Since that first night, I've been paying a lot of attention to what I am actually feeling. When I sit, I focus on my legs and butt meeting the chair. When I stand, it's my feet on the ground. I've had intermittent dulled sensation in my feet for years, so it's been really interesting to pay attention to what I feel and watch the sensation come and go. Though again, the more I pay attention to it, the more it turns into solidity and less fizzy.

For a number of years, I saw an Alexander Technique teacher in Boston by the name of Debi Adams, who I strongly recommend to anyone in that area. I had to stop the lessons when I moved to Israel three years ago, and the bodily awareness that came from them  faded over the course of a year or two. But when I started to pay attention to the
sensations, then lessons instantly came back and with them a body awareness I hadn't realized was so dulled. (On my healing blog I wrote about a class I took with Tommy Thompson, a master teacher of the Alexander Technique).

The trick seems to be to pay attention to two things: the actual sensation coming from my body and the fact that the thing I'm touching is pushing back on me. When I step on the ground, I'm pushing down, but the ground is pushing back up. When I lie on the bed, gravity is pushing me down and the bed is pushing me up. Focusing on the contact point between the two is where all the good stuff happens. If I focus too much on myself, then I ignore the world around. But if I focus too much outside, then I miss myself.

The other trick is not to try to change anything, but just to pay attention and let the change come. Part of MS is a disconnect between what's outside and our perceptions of it. This technique brings those two into clearer harmony.

I don't know if the technique helps repair the damaged nerves or builds new neurological connections, but one way or another, it helps.

I'm wondering what types of experiences others have had when focusing on their sensations and if it helped them to heal? Please comment and let me know.

Tuesday, March 23, 2010

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?

Tuesday, January 5, 2010

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.