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.