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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?
Showing posts with label newly diagnosed. Show all posts
Showing posts with label newly diagnosed. Show all posts
Tuesday, March 23, 2010
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.
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.
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:
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.
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.
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.
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