Wednesday, December 16, 2009

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.

Wednesday, December 2, 2009

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.

Wednesday, October 7, 2009

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.

Thursday, September 10, 2009

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.

Tuesday, May 5, 2009

Fear is the mother of anger


In Chinese medicine, health is achieved through the balancing of the five elements. Each element has an associated internal organ and emotion. In the generation cycle, water is the mother of wood, meaning that water energy creates wood energy. The emotions that are associated with them are fear (water) and anger (wood). Fear creates anger.

In the western world, we refer to this as fight or flight. When we are scared, our instinctual reaction is either to run or to turn and fight. In Chinese medicine, the wood energy is understood to be forceful directed energy, much like a punch. We get scared, we want to hit something. My experience with MS is that the wood energy often gets directed back at oneself, so essentially when we get scared, we hit and hurt ourselves. It's a very ineffectual way of running away. It's also another aspect of the urge for self-destruction.

The key to unraveling this cycle is to deal with our fear directly. There are many ways to do that which I will write about in my next post, but the best way is to send love to the fear. In the five element cycle, fire is the child of wood. Fire is associated with the heart and with love, so when we transform our anger into love we are bringing ourselves back into balance. More on this in the next post.

This post has a lot of Chinese medical jargon in it. I chose to use it, though I usually stay away from jargon if possible, because it's the best way to express what I wanted to convey, so if you have questions about the jargon, please let me know.

Monday, May 4, 2009

Anger takes away power

I've been noticing lately how effective anger is in taking away my power.

I'm the kind of person who is very sensitive to noises around me, so when my neighbors play their stereo too loud or let their yappy dogs yap at one am, it just makes me really angry. So much so that I either just sit and stew, which is no good for me, or I knock on their door to "talk" to them about it. When I'm angry, I'm very aggressive and I just want to shout at them. Invariably, that just results in their shouting back at me, and the music stays loud. When I go talk to my neighbor in a calm voice, she'll usually listen attentively and turn it down. Invariably, when I'm angry, I yell and nothing gets done.

The anger saps my power and then I make choices to please the anger, not to help myself, and those choices are always the wrong ones. By allowing the anger to have power over me, I lose my power.

There are those who are fueled by anger. I hear stories about football players who play their best games when they are really pissed off. They have figured out, or maybe their just wired that way, to use the power generated from anger to help themselves.

I don't know if I can generalize for all people with MS, but anger has never taken me to a good place, it's only taken me to more darkness. My choice is either to learn how to decrease my anger, which involves dealing with my fears (more about this later), or learn to channel the anger for my good.

I guess that's the question for y'all: does anger motivate you to help or harm yourself? Does it focus you? Or send you off in the wrong directions?

Saturday, April 11, 2009

Giving away power

I always try to look inside myself for the things that seem to have the most power in my MS and then try to change those. There are three that always lead me to bad places: fear, my inclination to self-destruction, and giving away my power. Today I'll write about giving away power.

Giving away power is when we assume that we are incapable of doing something and then prove it by our own actions. Another way of describing it is when we shoot ourselves in the foot.

An example: I went to meet one of my study partners last night and within the first ten minutes, I apologized for lacking focus as it had been a long day. Now, I felt like I was a little scattered and was having trouble focusing, but I have no idea what his perception was. He hadn't mentioned it or said anything, and for all I know, he thought I was very focused and just following out trains of thoughts. But once I say that I'm lacking focus, he's going to look at me for the rest of the night and think that I'm not focusing. I've made him think something about me which is only a reflection of how I'm thinking about myself, but may or may not reflect reality.

There have been numerous educational studies that find that a teacher's expectations and assumptions about a student play a major role in the success or failure of that student. I think this is true of all of our interactions. If we assume someone is ignorant, or we expect that they don't know what they are talking about, then even if they give us the correct answers, it's very hard for us to hear.

Giving away power is all about shaping someone else's assumptions about us to think worse about us. Why we would do this is a whole different discussion, but becoming aware of it is incredibly liberating.

Another example: I'm very good at fixing things. I used to be an auto mechanic and usually when I look at a mechanical object I can see how it comes apart and, usually, how to fix it. When I see someone trying to fix something and I go over to help, if I'm staying within my power, I ask if I can help, let them know I'm good at fixing or that I've fixed something like it before, and I start a conversation with them about how we can fix the thing.

If I'm giving away my power, I start the conversation with: "wow, it's been a long time since I've fixed one of those, I don't even know if I remember how", or some variation of that. I'm letting them know my weaknesses before I let them know my strengths. Invariably, when I give away my power, the person discounts my input and even if I know how to fix it, they prevent me from helping. When I'm in my power, the person usually hands me the object and it gets fixed.

This brings me back to an important question: How do I talk about having MS without giving away my power?

Telling someone I have MS invariably brings up lots of preconceptions in a person's head and they might treat me differently now that they know. So the first thing I do is have a conversation with a person about their MS stereotypes. It puts everything out in the open as they then know what's going on for me and what's realistic and what's not.

When I talk about my MS, I always talk about it from a place of power. I don't talk about it as how it limits me, I just let them know it's a fact of my life and go on from there. I want to shape their assumptions about me to know I'm just a normal guy with MS, not the miserable, pathetic stereotype they may have in their mind.

I try to watch what I say to be aware of when I'm giving away my power and be aware of when I'm shaping someones assumptions to think worse of me.

I know that giving away power leads me to bad places, and when I look over the history of my episodes, I can usually find a way in which I was giving away power in a major way at the time of the episode. I don't know if holding onto my power will prevent more episodes, but it's been a good measure for how healthy I am.

I think it's important to note that MS does rob us of power. The question is if we're giving it away before the MS comes to prove the point.

Sunday, March 29, 2009

Auto-Immune?

Several years ago my thinking on MS shifted radically. I was working with a patient who was suffering from an auto-immune condition. As we talked about the history of her condition, it became clear to me that the imbalances that led to the auto-immune condition existed long before the symptoms started, and, more importantly, her own actions and choices were directly contributing to the condition. In essence, she was creating her own condition.

I began to rethink MS at that point. MS is an auto-immune disease where the immune system goes after the body. Another way of talking about it would be to say that we are doing it to ourselves. At that point, I started looking at my life and trying to figure out how and why I would want to make myself sick. What I found is that over and again, my actions and thoughts were a contributing factor in my MS.

I want to be very clear, I am not blaming myself for having MS, nor do I think anyone ever should. There are many contributing factors to MS, and our actions are only one among many. But the idea that I may have some influence or control over the course of my MS is very powerful. It's a two edge sword, owning the power for the condition means that I have to come to some sort of peace with my role in worsening my MS, but it means that my actions can help me to get healthy.

I am an acupuncturist and a healer. I tend to see the body as comprised of Qi (roughly translated as Internal energy), and I don't see a separation between the body, mind, or spirit. In that vein, every one of my thoughts, feelings, or actions can contribute either to my health or to my sickness, though it's never completely clear which is which. I also know that my body can be giving my clues about what's going on in my spirit and mind, so I need to pay attention.

As I wrote in my introduction, I now look for the actions and attitudes that have power in my MS. If I begin with the idea that I do this to myself, then I have to work hard to change the parts of myself that don't contribute to my health. This is not an easy process as I'm quite connected to some of the things that need changing. The three most powerful things I've found so far are: fear, self-hate, and giving away my power. They are all connected to one another and I will write more on them in the future.

Saturday, March 21, 2009

How I explain MS to the layman

As I posted about earlier, whenever I mention to someone that I have MS, my next question is always if they understand MS. It's an invitation to them to have a conversation about MS. If they don't understand it, or have no experience with it, I try to give them a way of understanding it. Things are much less scary if you have a box to put them into, so I give them one.

The box that I use works for me because I used to be an auto mechanic. I can talk about mechanical devices with ease and confidence. My advice is to find a box that resonated with who you are. Mine goes something like this:

MS is a disease that effects the nerves of the body. Nerves are like wires - there's a nerves down the middle that carries the signal and then it's surrounded with insulation called myelin. The myelin does two things, the first is that it protects the nerves from damage, and the second is that it speeds the transmission of the nerve signal. MS is an auto-immune disease, which means the immune system mistakes the myelin insulation for a germ and it pulls off pieces of the myelin called plaques.

That causes two things: the nerve transmission slows down which means that the sensation or the muscle impulse doesn't travel as quickly between the brain and the body, and secondly the nerves can "short circuit" causing inflammation around the nerve, which slows it down even more. The amazing thing is that the body then puts myelin back on the nerve. Then the swelling goes down, and the nerves return to normal. I have what's called relapsing-remitting MS, which means that my immune system pulls of myelin, my body puts in back, and my symptoms are mostly temporary.

But there are cases where the immune system pulls of the myelin faster than the body can put it back, which can lead to scarring on the nerve itself. This is called a sclerosis. MS is named because it can happen multiple times in the body, thus multiple sclerosis. If this happens a lot, it can lead to more progressive and permanent damage in the body.

No one knows why it happens or what causes it, but it's basically this back and forth in the body, so sometimes I have symptoms and sometimes I don't. I'm very open about my MS, so if you have any questions now or anytime, just ask.

That's about how my schpiel goes. Most people understand the image of wires short circuiting and not functioning correctly. Then they get fixed which either makes them work like before or differently than before. I give them a way to understand the condition and then it's not scary anymore. We can talk about it too. Life for me is much easier this way.

Advice for the newly diagnosed

I remember sitting in my car in 1996 crying. I had just walked out of the doctors office and he'd given me the news that I had MS. I'd asked him a few questions and then was strangely blank. He asked me if I had more questions, as I think he had a lot more he wanted to say to me, but I said "no, probably tomorrow I'll have a lot, but not right now." I walked out of his office and sat in my car for 10 minutes and cried.

I went home and called my best friend and told him the news. He asked if I'd had dinner, and when I said no, he told me he'd be by in a few minutes with some pizza. I called my parents and had a very short conversation with them. I told them the news, that my friend was coming over, and that we'd talk more tomorrow, but I just needed to digest the news on my own for a moment. I called my other best friend and he said he'd be by with some beer. I called my third best friend. He asked if I wanted pizza, then beer, and finally settled on bringing by some videos.

We watched comedies, talked, drank beer, ate, and laughed for a long time that night. It was just what I needed: to be reminded that even if I was sick with a disease about which none of us had the slightest understanding or knowledge, I was still loved. The next day, I started dealing with what had changed.

It took me awhile to realize it, but actually very little had changed for me. I was still having this strange problem with my eyes, only now it had a name. But other than that, things were not that different. The change was in those around me.

I quickly realized there were two types of people: those who could support me and those I had to support. Here I am, 26 years old (my birthday was two days earlier), and dealing with what everyone thought was a major change to my existence, and I was having to offer support to most of the people I met. There were some who just cried when they heard the news. So I had to comfort them. I'm a guy and had never learned how to cry with others, so the only thing I could do was to try to hold them and try to comfort them.

There were those who got scared and asked the stereotypical questions: so, are you going to have to be in a wheelchair now? They usually asked it as we were taking my dog for a walk. Or worse yet, I would just see the fear in their eyes, but they wouldn't say anything.

Maybe it's my nature, but I always tried to have compassion for these people. I had to realize that the news was difficult for them to hear, especially so for those who loved me. While I was dealing with it 24/7 and living it, they were only dealing with it a little bit at a time, so in some ways, it was much more difficult for them.

And then there were those who had no emotional reaction at all, or kept it in check, which gave me the space to have my own reaction and deal with my emotions. There weren't many of those people, but I really valued them.

One of the worst pieces of advice I got was to keep quiet about it. I'm not a quiet person by nature and how weird is it to be telling people who I've known for two or three years that I'm having an episode but didn't want to tell them earlier. It shakes the trust in the relationship. It's much easier to just talk about it then they can feel free to ask questions when they have them and MS is just a part of my life, not the elephant in the room.

So my advice for the newly diagnosed:
1. Surround yourself with people who are going to love you no matter what. (I think this is good advice for life in general too.)

2. Get ready to comfort a lot of the people around you.
Try to balance your days between the people you have to comfort with the people who will actually comfort you. One of the advantages of being newly-diagnosed is that you can be rude to people and they'll write it off as part of your newly-diagnosed status. That gives you the freedom to spend time with who you want and not feel obligated to spend time who aren't going to be helpful.

3. Give people a box to understand you.
One of my rules is that I never tell people I have MS without then asking them if they understand the disease. I've found that if I don't, no matter what people's visible reaction, that if they don't know what MS is, they will imagine the worst things and it will change our relationship for the worse. They will always be worried about bizarre things that stem from theirs fears. If I tell them about MS it does two things: it gives them a way to understand what's going on and it lets them know that I'm open to talking about it (though I usually explicitly say that too). The understanding lessens their fears, and my openness makes it a topic of conversation instead of something to be skirted around in uncomfortable ways.

I can't tell you how many people have called me to say that a friend of a friend just got diagnosed and the friend needs to talk to someone about it. So I end up explaining MS to the friend so they can be a better friend to their friend with the new diagnosis. I always got the feeling that just having a normal conversation about it is very relaxing for those who are scared by it.

So that's my advice for the newly diagnosed: stick with the people who will support you, not those who drain you, and help people to understand what you're going through. Let me know if it's helpful.

The title

First post in my new blog is that I wanted to explain the title. It's my belief that who I am influences my MS. That's not to say it's my fault, but what I do has a huge effect on the course of the disease. Not just my actions, but all of my beliefs and attitudes. The trick is to find the ones with the most power and influences over my MS and change those. If I can do that, maybe I'll get better a little, or at least not get worse. But most importantly, if I've passed on to my children the weakness or propensity for MS that I have, then maybe if I change myself, they won't develop it. Or if they do, they'll have the tools to deal with it better than I have. So I do a lot of hard work on myself which will hopefully benefit my children.

I've mostly kept my work to myself and only shared it publicly a few times. I hope this blog can help me to express how I approach my MS and my hope is that it might help others. So I'll start writing and start the conversation.