The medication (Sinemet) that I take every 3 hours gives me functionality for anywhere between 15 minutes and 90 minutes each cycle, and sometimes not at all. I am completely dependent on it and the availability of this drug makes a tremendous difference to the quality of my life. Many years ago when I first heard about this medication I was so angry. The side effects seemed so much worse than the symptoms of the disease, at least as I was experiencing them at the time. And also the medication stops working altogether after 10-15 years.
Then I heard that this medication was only discovered sometime around 1968. I realized that this means that, if I had been living with this disease 45 years ago, I would not at this point in my life have any function at all. Also laptop computers, the Internet, and email had not been invented at that time. These technologies are lifelines for me, and I am only able to use them because I have some amount of functional time every day. Without technology and this medication, my life would be radically different and most of what I now do during my day would not have been possible just 40 years ago. The evolution of pharmaceutical and computer technologies over the past few decades provides me a profound degree of freedom in how I live my life. And the anger that I initially felt has now become profound gratitude that this medication is available.
From looking back to looking forward, even 10 years from now, it’s clear that the whole landscape of living with Parkinson's is going to be radically different. Looking at my situation in this way and seeing how evolutionary the continuum of life is, creates a context of understanding and a perspective that reveals that we are all part of an evolutionary process. And that this continually evolving process, which is a constant reaching forwards and upwards to create the new, is an illumination of the inherently positive nature of life itself.
Wednesday, August 11, 2010
Life is Positive
When I broke my rib in February, it was the most painful thing I’ve ever experienced over a prolonged period. The Parkinson’s accentuated the pain of the broken rib. One night I was lying on the bed in excruciating pain, so I started to meditate. After a short time I found myself simultaneously experiencing both intense pain and a state of ecstasy. It went on for quite a long time and I was filled with awe at the experience of such extreme opposites occurring simultaneously. I saw that even this level of pain could not destroy the inherent positivity of life itself. This positivity is always there no matter what else is happening, whether I’m in touch with it or not. It was a huge gift to realize that this positivity can be trusted and embraced no matter what else is going on.
Tuesday, June 15, 2010
Something Else is Possible
I read somewhere a while ago that by 2020 depression will be the second largest cause of suffering, next to heart disease. I don’t know if it’s true, but it’s a comment on how much depression is around and how many people feel or find they can’t go beyond it. There is a prevailing cultural view particularly in the West, I think, that if depression is physiologically or chemically caused that there’s no way to change it, it’s just not possible—except possibly through medication.
I’m excited about what I’m discovering (see previous entries on depression) because it proves that it’s possible to not be taken down by depression. It’s not easy and people may need to take time to learn how to do it, but it’s possible.
I’m excited about what I’m discovering (see previous entries on depression) because it proves that it’s possible to not be taken down by depression. It’s not easy and people may need to take time to learn how to do it, but it’s possible.
Thursday, April 8, 2010
A Turning Point
The turning point came for me when I finally got that the effect I was having on other people was more important than how I was feeling. Caring friends would try to help me by telling me this, but I absolutely did not agree with them. I would think, “Who the hell are they to say that? They don’t have to deal with what I’m going through. They have no idea what it’s like.” I felt completely justified acting out of anger and depression on those around me.
But over time I started looking; I started watching how people affect each other, including my effect on those around me. And I could see it was either one way or the other—everything what I did or said either lifted others up or dashed them down.
I was in a doctor’s office one day and a man wheeled his wife in. I noticed that while she wasn’t negative toward him, she wasn’t positive either—she was indifferent. He rushed around the waiting room doing things for her. As I watched them, I realized that even though she was indifferent the effect she was having on him was awful. She had a sense of entitlement that people often have when they’re ill. It was an eye-opener!
One day soon after this, I was talking to my daughter and in the face of my negativity she was unerringly positive. She held her ground but no matter what she’d say or do, I just kept on being negative. And at a certain point she couldn’t hold the positivity any more. It was sucked right out of her. I saw it happen right in front of my eyes. It absolutely horrified me because I knew it was my doing.
This event was a big turning point. When I saw the effect of what I had done, I committed within myself to never do that to another person again. This has become a guiding principle in my life. I view it as a practice. I’m by no means perfect but it’s a constant challenge to live up to this. It has shifted my attention away from myself and onto caring about others in a way I didn’t before.
The pivot point in all of this is choice. I have the ability to choose how I’m affecting those around me, regardless of how angry or depressed I may be feeling. The choice is mine. The more I choose to be positive the stronger the ability to do it becomes; in a way it’s self-generating. And even as I write it, there’s something so enlivening about the truth of that. It wakes me up, makes me want more life, I want more of this, I want to go further.
What I’m describing is universal, anybody can do it. You don’t have to have Parkinson’s to do it. But having Parkinson’s is what turned it around for me, and for that I’m very grateful.
But over time I started looking; I started watching how people affect each other, including my effect on those around me. And I could see it was either one way or the other—everything what I did or said either lifted others up or dashed them down.
I was in a doctor’s office one day and a man wheeled his wife in. I noticed that while she wasn’t negative toward him, she wasn’t positive either—she was indifferent. He rushed around the waiting room doing things for her. As I watched them, I realized that even though she was indifferent the effect she was having on him was awful. She had a sense of entitlement that people often have when they’re ill. It was an eye-opener!
One day soon after this, I was talking to my daughter and in the face of my negativity she was unerringly positive. She held her ground but no matter what she’d say or do, I just kept on being negative. And at a certain point she couldn’t hold the positivity any more. It was sucked right out of her. I saw it happen right in front of my eyes. It absolutely horrified me because I knew it was my doing.
This event was a big turning point. When I saw the effect of what I had done, I committed within myself to never do that to another person again. This has become a guiding principle in my life. I view it as a practice. I’m by no means perfect but it’s a constant challenge to live up to this. It has shifted my attention away from myself and onto caring about others in a way I didn’t before.
The pivot point in all of this is choice. I have the ability to choose how I’m affecting those around me, regardless of how angry or depressed I may be feeling. The choice is mine. The more I choose to be positive the stronger the ability to do it becomes; in a way it’s self-generating. And even as I write it, there’s something so enlivening about the truth of that. It wakes me up, makes me want more life, I want more of this, I want to go further.
What I’m describing is universal, anybody can do it. You don’t have to have Parkinson’s to do it. But having Parkinson’s is what turned it around for me, and for that I’m very grateful.
Three Causes of Depression
Dealing with depression is often a real challenge for people with Parkinson’s. It has been, and continues to be, a significant and revealing part of my own journey. And this is why I wanted to share the fruits of my investigation into depression.
There are three main causes for depression with this disease. The first is that the Parkinson’s itself is caused by lack of dopamine. I’ve heard that by the time a tremor is visible already 80% of the dopamine is gone. Dopamine is a neurotransmitter and one of our body’s mood balancing hormones. So with such a significant loss of dopamine there’s a strong physiological pull to depression.
The second is the medication. I’m taking Sinemet (Carbidopa-Levodopa), and one of the side effects of the medication is depression. I understand that it’s a side effect of other Parkinsonian medications as well. So there are two very real physiological reasons why depression is likely to be a strong pull.
The third is because the disease itself is such a difficult and frustrating challenge. In earlier stages there’s the anticipation and dread of what is ahead. And when you get to the stage that I’m currently at, functionality is sometimes so restricted that there are times when I just want to give up, and anger and depression arise.
So there’s a triple hit there. Almost everybody I know who has Parkinson’s is on
anti-depressants of one kind or another. I decided not to go that route, partly because I’m extremely sensitive to drugs. And partly because I wanted to see whether I could exercise my own volitional capability and choose to not be depressed.
And this is what I’ve been experimenting with.
There are three main causes for depression with this disease. The first is that the Parkinson’s itself is caused by lack of dopamine. I’ve heard that by the time a tremor is visible already 80% of the dopamine is gone. Dopamine is a neurotransmitter and one of our body’s mood balancing hormones. So with such a significant loss of dopamine there’s a strong physiological pull to depression.
The second is the medication. I’m taking Sinemet (Carbidopa-Levodopa), and one of the side effects of the medication is depression. I understand that it’s a side effect of other Parkinsonian medications as well. So there are two very real physiological reasons why depression is likely to be a strong pull.
The third is because the disease itself is such a difficult and frustrating challenge. In earlier stages there’s the anticipation and dread of what is ahead. And when you get to the stage that I’m currently at, functionality is sometimes so restricted that there are times when I just want to give up, and anger and depression arise.
So there’s a triple hit there. Almost everybody I know who has Parkinson’s is on
anti-depressants of one kind or another. I decided not to go that route, partly because I’m extremely sensitive to drugs. And partly because I wanted to see whether I could exercise my own volitional capability and choose to not be depressed.
And this is what I’ve been experimenting with.
Tuesday, March 9, 2010
The Olympics and Eros*
(*Eros—the creative energy and intelligence that drives the evolutionary process at all levels of existence; that drive which takes you beyond yourself.)
This transcript is from a dialogue between a friend of mine and myself on Feb 23, 2010 shortly after the Olympics in Vancouver had ended.
Mags: I recently fell and fractured a rib (ouch!), and because I’ve been so incapacitated lately I’ve been watching more television. I don’t really like to watch much TV but luckily the 2010 Vancouver Winter Olympics have been on. I’ve been completely captivated by these young athletes—the women’s downhill skiers, for example. These women are so incredibly daring, so gutsy. And you think about all the work they’ve done, all the training that they’ve gone through for so many years. Plus the ambition and the longing to be in the Olympics in the first place. And everything else they’ve gone through to get to be there. And then suddenly there they are, THE day and they’re on the slopes and they’re at the gate….
Four or five of them had mega falls, really terrifying falls. It’s difficult to believe they weren’t injured, but luckily I don’t think anybody was seriously hurt. One of the women came out of the gate and fell within about 100 yards of the gate. She just tripped on her skis and tumbled. And one of the sports commentators said, “She’ll go down as one of history’s sports bloopers.” I thought that for this woman it must be so heart-rending that she had poured everything into this one moment in time and she had made this tricky, simple mistake. There was a certain element to it, even in the way it was spoken about, of shame.
The other women who also fell, they were pushing the edge, they were totally pushing. They had gone so far and they weren’t playing it safe. In the Olympics you can’t play it safe, you have to use the high of the moment to push further forward. It reminds me of when Roger Bannister did the 4 minute mile all those years ago, and how everybody was so incredibly excited. And how the Olympics is one of the forward edges of evolution. The best of humanity in certain disciplines all come together to see how much further they can go from even where they’ve already come. It’s thrilling.
And then there was the men’s figure skating. They’re doing these triple and quadruple jumps. The quad, which is almost impossible, is the leading edge, it’s as far as they’ve gone. All of them had the quad in their program, but at the last minute some of them chose not to do it in order to get better marks. Some of them who did choose to do it fell. And there were just one or two who flew through the air and were absolutely beautiful. And you can see these people got into that place of Flow, that place of Eros, where they were carried. They put themselves way out on their own edge by taking enormous risks—risking their physical selves, the Games, the medal, their country and everything.
There was also a young man from Georgia, Nodar Kumaritaszwili, who died on the luge. He was 21 and he died practicing even before the Games had begun. The track was an exceptionally fast track, and a number of lugers had expressed their concerns about it being so fast. So here was this young man getting ready to compete just a day before the Olympics began, and he lost his life while pushing his edge.
And as I’ve been watching all of this on the television, I was very aware of this Parkinsonian 64 year old woman (me) sitting in the chair clutched over with pain, watching these amazing athletes. It was like from one extreme to the other. My body was one extreme and these athletes were at the other extreme end of the spectrum of possibility and performance. And yet I think the experience of Eros, of the drive to go further than one has before, is the same. I don’t know how to put it together. I don’t know if it makes any sense.
D: So how daring was it for you to be sitting in front of the television watching these young people do what they were doing, given your circumstance.
M: I found it was almost like a drug. I was watching them in the middle of the night I woke up and I couldn’t sleep, and I’d think, “Oh maybe the Winter Olympics is on” and I’d turn the TV on. And I was compelled to watch them, it was such positivity and fascination and delight and joy. There was some longing in me, because I never was that sporty when I could have been. There was a longing in me to have a body that could do that. But it wasn’t resentful, or regretful, or even envious. It was just rejoicing in the sheer beauty of it.
I felt so with them. Each of the women that went down that slope, I felt like I was totally with them. I don’t know why. I think it’s the spirit of guts, and “go there”, and don’t the hell let anything stop you.
D: So don’t you have those days where you have your Olympics? Where that’s the day you’ve been training for for a long time. To not just get through it, but to get through it with style and grace?
M: I don’t know the answer to that. I know sometimes other people say they’re inspired by me. And it always makes me wonder why, because I’m such a mixture.
D: I got that. But what’s your training regimen?
M: My training regimen is to keep going, and keep evolving, and keep going farther and farther and farther. And don’t give up. It’s aligning with the positivity more and more and more. I feel I do it a lot and yet I have such a lot further to go.
D: And you have days when you’re much better at aligning with it and days when you’re not.
M: Definitely.
D: So can you see that, given your illness, that’s a very daring position to take?
M: What position?
D: Of going further, of being positive, of always trying to move ahead, to be better, to get better.
M: I never thought of it as daring, I just thought of it as essential. I must, I’m compelled to do that. If I wasn’t doing that, everything would be totally difficult.
D: Do you think that’s probably the experience of these women skiers also?
M: Yes
D: For them, you probably just described what their experience is. It’s just what compels them.
M: That’s probably true. That’s what they look like.
D: That’s what it looks like from the outside. You’re describing what it looks like from the outside. But a minute ago, you described what I think is their inner experience. It’s just what I do, or it’s what gives me purpose in life.
It’s just so obviously a metaphor for you, that’s what’s so interesting to me.
M: I thought it must be, but I couldn’t quite put it together. I’ve been finding it totally compelling. With the men’s figure skaters, I didn’t see the women, but they’re thrilling. It’s so thrilling what they’re doing, and all the world is watching. It’s sobering. It’s truly heroic.
D: So there’s one piece I want to pull out of here which you haven’t covered, but it sticks out for me. It’s the shame of that woman tripping.
M: I don’t know, she really stuck with me. When everybody else fell, they fell at the end of the course. There was a huge kind of leap they had to do, it was death defying and risky, and all the others fell down at the end of the course. And even falling at that point in the track was heroic. And everybody was with them.
But this other woman fell just out of the gate. What the commentator said, and he wasn’t nasty, but he said, “Oh no. This will go down as one of history’s great sports bloopers.” And I felt like the bottom fell out of my heart when he said it. Because I felt that woman had struggled and trained and gone through so much to get there and then for this to happen. It was ignominious and must have been devastating for her, and yet she would have to just keep going on, and keep going and keep going. There wasn’t the heroic glory and sympathy and appreciation attached to it as there was with the other falls.
I don’t know why, but I feel so personally impacted by it. It was heartbreaking to watch.
D: I think the experience of failing in that way is definitely a universal experience. But I think it’s a universal experience that you very personally experience at times.
M: Yes, definitely.
M: It’s like one of my caregivers. She’s doing her finals for occupational therapy. She’s just taken her driver’s test for the sixth time and failed. She came in the other night, and I asked her, “Did you get it?” She said no, and I just put my arms around her we just hugged. She’s going to take it again in two weeks. When somebody just fails and fails and fails and keeps going, it’s incredibly moving and important. I think because the temptation to give up gets bigger and bigger each time. So it’s an even bigger victory when somebody doesn’t give up. It’s funny talking about this, I feel very moved by it all.
D: I think that’s why the Olympics are so moving, because it’s a very universal, it’s a physical, psychophysical representation through these people and their sport, of overcoming the challenges of life.
M: Yes, I guess that’s it. I guess the Olympics have always been that.
D: I think so. And the fact that people from all over the world come together just to celebrate triumph for humanity. It’s actually a very moving thing.
M: The humanity of the whole thing. But it is also the Eros of it. I’ve been thinking so much about Eros and my own life, and aligning with that. And it’s very powerful.
This transcript is from a dialogue between a friend of mine and myself on Feb 23, 2010 shortly after the Olympics in Vancouver had ended.
Mags: I recently fell and fractured a rib (ouch!), and because I’ve been so incapacitated lately I’ve been watching more television. I don’t really like to watch much TV but luckily the 2010 Vancouver Winter Olympics have been on. I’ve been completely captivated by these young athletes—the women’s downhill skiers, for example. These women are so incredibly daring, so gutsy. And you think about all the work they’ve done, all the training that they’ve gone through for so many years. Plus the ambition and the longing to be in the Olympics in the first place. And everything else they’ve gone through to get to be there. And then suddenly there they are, THE day and they’re on the slopes and they’re at the gate….
Four or five of them had mega falls, really terrifying falls. It’s difficult to believe they weren’t injured, but luckily I don’t think anybody was seriously hurt. One of the women came out of the gate and fell within about 100 yards of the gate. She just tripped on her skis and tumbled. And one of the sports commentators said, “She’ll go down as one of history’s sports bloopers.” I thought that for this woman it must be so heart-rending that she had poured everything into this one moment in time and she had made this tricky, simple mistake. There was a certain element to it, even in the way it was spoken about, of shame.
The other women who also fell, they were pushing the edge, they were totally pushing. They had gone so far and they weren’t playing it safe. In the Olympics you can’t play it safe, you have to use the high of the moment to push further forward. It reminds me of when Roger Bannister did the 4 minute mile all those years ago, and how everybody was so incredibly excited. And how the Olympics is one of the forward edges of evolution. The best of humanity in certain disciplines all come together to see how much further they can go from even where they’ve already come. It’s thrilling.
And then there was the men’s figure skating. They’re doing these triple and quadruple jumps. The quad, which is almost impossible, is the leading edge, it’s as far as they’ve gone. All of them had the quad in their program, but at the last minute some of them chose not to do it in order to get better marks. Some of them who did choose to do it fell. And there were just one or two who flew through the air and were absolutely beautiful. And you can see these people got into that place of Flow, that place of Eros, where they were carried. They put themselves way out on their own edge by taking enormous risks—risking their physical selves, the Games, the medal, their country and everything.
There was also a young man from Georgia, Nodar Kumaritaszwili, who died on the luge. He was 21 and he died practicing even before the Games had begun. The track was an exceptionally fast track, and a number of lugers had expressed their concerns about it being so fast. So here was this young man getting ready to compete just a day before the Olympics began, and he lost his life while pushing his edge.
And as I’ve been watching all of this on the television, I was very aware of this Parkinsonian 64 year old woman (me) sitting in the chair clutched over with pain, watching these amazing athletes. It was like from one extreme to the other. My body was one extreme and these athletes were at the other extreme end of the spectrum of possibility and performance. And yet I think the experience of Eros, of the drive to go further than one has before, is the same. I don’t know how to put it together. I don’t know if it makes any sense.
D: So how daring was it for you to be sitting in front of the television watching these young people do what they were doing, given your circumstance.
M: I found it was almost like a drug. I was watching them in the middle of the night I woke up and I couldn’t sleep, and I’d think, “Oh maybe the Winter Olympics is on” and I’d turn the TV on. And I was compelled to watch them, it was such positivity and fascination and delight and joy. There was some longing in me, because I never was that sporty when I could have been. There was a longing in me to have a body that could do that. But it wasn’t resentful, or regretful, or even envious. It was just rejoicing in the sheer beauty of it.
I felt so with them. Each of the women that went down that slope, I felt like I was totally with them. I don’t know why. I think it’s the spirit of guts, and “go there”, and don’t the hell let anything stop you.
D: So don’t you have those days where you have your Olympics? Where that’s the day you’ve been training for for a long time. To not just get through it, but to get through it with style and grace?
M: I don’t know the answer to that. I know sometimes other people say they’re inspired by me. And it always makes me wonder why, because I’m such a mixture.
D: I got that. But what’s your training regimen?
M: My training regimen is to keep going, and keep evolving, and keep going farther and farther and farther. And don’t give up. It’s aligning with the positivity more and more and more. I feel I do it a lot and yet I have such a lot further to go.
D: And you have days when you’re much better at aligning with it and days when you’re not.
M: Definitely.
D: So can you see that, given your illness, that’s a very daring position to take?
M: What position?
D: Of going further, of being positive, of always trying to move ahead, to be better, to get better.
M: I never thought of it as daring, I just thought of it as essential. I must, I’m compelled to do that. If I wasn’t doing that, everything would be totally difficult.
D: Do you think that’s probably the experience of these women skiers also?
M: Yes
D: For them, you probably just described what their experience is. It’s just what compels them.
M: That’s probably true. That’s what they look like.
D: That’s what it looks like from the outside. You’re describing what it looks like from the outside. But a minute ago, you described what I think is their inner experience. It’s just what I do, or it’s what gives me purpose in life.
It’s just so obviously a metaphor for you, that’s what’s so interesting to me.
M: I thought it must be, but I couldn’t quite put it together. I’ve been finding it totally compelling. With the men’s figure skaters, I didn’t see the women, but they’re thrilling. It’s so thrilling what they’re doing, and all the world is watching. It’s sobering. It’s truly heroic.
D: So there’s one piece I want to pull out of here which you haven’t covered, but it sticks out for me. It’s the shame of that woman tripping.
M: I don’t know, she really stuck with me. When everybody else fell, they fell at the end of the course. There was a huge kind of leap they had to do, it was death defying and risky, and all the others fell down at the end of the course. And even falling at that point in the track was heroic. And everybody was with them.
But this other woman fell just out of the gate. What the commentator said, and he wasn’t nasty, but he said, “Oh no. This will go down as one of history’s great sports bloopers.” And I felt like the bottom fell out of my heart when he said it. Because I felt that woman had struggled and trained and gone through so much to get there and then for this to happen. It was ignominious and must have been devastating for her, and yet she would have to just keep going on, and keep going and keep going. There wasn’t the heroic glory and sympathy and appreciation attached to it as there was with the other falls.
I don’t know why, but I feel so personally impacted by it. It was heartbreaking to watch.
D: I think the experience of failing in that way is definitely a universal experience. But I think it’s a universal experience that you very personally experience at times.
M: Yes, definitely.
M: It’s like one of my caregivers. She’s doing her finals for occupational therapy. She’s just taken her driver’s test for the sixth time and failed. She came in the other night, and I asked her, “Did you get it?” She said no, and I just put my arms around her we just hugged. She’s going to take it again in two weeks. When somebody just fails and fails and fails and keeps going, it’s incredibly moving and important. I think because the temptation to give up gets bigger and bigger each time. So it’s an even bigger victory when somebody doesn’t give up. It’s funny talking about this, I feel very moved by it all.
D: I think that’s why the Olympics are so moving, because it’s a very universal, it’s a physical, psychophysical representation through these people and their sport, of overcoming the challenges of life.
M: Yes, I guess that’s it. I guess the Olympics have always been that.
D: I think so. And the fact that people from all over the world come together just to celebrate triumph for humanity. It’s actually a very moving thing.
M: The humanity of the whole thing. But it is also the Eros of it. I’ve been thinking so much about Eros and my own life, and aligning with that. And it’s very powerful.
Wednesday, December 23, 2009
“I can change this disease."
It all started in March 1995 when I fell and hit my head very badly but it wasn’t until December 1996 that I was actually diagnosed with Parkinson’s. So I’ve had this disease for almost 15 years now. For the past 7 years I’ve been taking Sinemet, and have experimented with an array of other things, conventional and alternative, over the years. More about this in future posts.
I’ve been through many phases of this long term disease. For a while after I received the diagnosis, I was very angry. I was thoroughly horrible to be around because I was so angry. People talked to me, and friends tried to help me to stop being so unpleasant. At the time I remember feeling that nobody knew what it was really like and wondering indignantly how they dared to presume that they did. These were dear family and friends who were simply trying to help me. Looking back now I can see how much we were all impacted by what was happening to me and the long term implications of it all. My friends and family were dealing with all their own fears and responses too. Between all this and my victimization and anger, it was not an easy time!
Then came a time of what could be called naive positivity. It was based in avoiding the reality of having the disease. So I jumped from being bitterly angry on the one extreme to avoiding on the other. While I was much more pleasant to be around, I wasn’t living in the real world either.
Then one day one of my doctors * explained to me that it’s like a see-saw, and that I couldn’t be on either end of the see-saw but that I had to find a way to be in the middle. One end is negativity, anger, and rage; the other end is this naïve positivity which is based on avoidance of the truth. But the middle is where everything is in the picture and nothing is being avoided. It’s a place of true equilibrium, a place of honesty and authenticity and it’s my ongoing focus to abide in this place as much as possible.
Underneath all of this, ever since I was first diagnosed, I’ve had a sense that I can cure this disease. It’s a mysterious experience and I’ve often wondered if it’s just wishful thinking, but it doesn’t feel like it. It’s different from the ungrounded feeling of avoidance. It’s real and palpable; it’s a feeling of conviction that I can cure this disease, that it’s possible! This conviction, which is not from my mind but is almost on a cellular level in my body, says, “I can change this!” So I’ve always had this idea that I can do it, and I’ve been continually trying to find a way.
I’ve discovered over the years in speaking with other people with Parkinson’s that there are others with the same experience and conviction that I have. But for the most part they tend not to speak about this—worried that they’ll be seen as stupid, crazy, or totally in denial. Although I’ve met several other people who have this same deeply felt conviction, none of us know how to do it yet.
I went to see a neurologist about 7 years ago. At that time I was more functional than I am now, and as he observed me walking down the corridor he mentioned that for many years he had seen about 40 people a week with Parkinson’s, and that he always has the same question. When I asked him what the question was, he said, “What IS this?” It really struck me at the time, and it’s a question that I often wonder about myself. My experience is that there is something mysterious about Parkinson’s, which may be in part why it seems possible to change it. It’s a disease that is so unknown in many ways.
So one aspect of my journey with Parkinson’s has been and continues to be all about this—finding out how to change it! I’m often around others with Parkinson’s and I see not only them but also the people in their lives struggling so intensely. This disease can go on for many, many years and it’s such a confounding and profoundly challenging disease for everyone concerned.
And what is such a HUGE driving force for me is that it seems that if I can figure out how to change this, then there’s a strong chance that it might work for others as well. Oddly enough, I don’t find the strength to struggle with this question and all of the ups and downs of this disease when I look at it as a way for me to solve my own predicament. Looking at it that way just doesn’t give me any juice. But when I see this question of how to change Parkinson’s in the context of the incredible impact that I could have on the lives of the six million people who have this disease, then finding an answer to this question through the successes and tribulations of my own experience of Parkinson’s becomes something about which I’m fiercely passionate. For this I have all the energy in the world.
I’ve been through many phases of this long term disease. For a while after I received the diagnosis, I was very angry. I was thoroughly horrible to be around because I was so angry. People talked to me, and friends tried to help me to stop being so unpleasant. At the time I remember feeling that nobody knew what it was really like and wondering indignantly how they dared to presume that they did. These were dear family and friends who were simply trying to help me. Looking back now I can see how much we were all impacted by what was happening to me and the long term implications of it all. My friends and family were dealing with all their own fears and responses too. Between all this and my victimization and anger, it was not an easy time!
Then came a time of what could be called naive positivity. It was based in avoiding the reality of having the disease. So I jumped from being bitterly angry on the one extreme to avoiding on the other. While I was much more pleasant to be around, I wasn’t living in the real world either.
Then one day one of my doctors * explained to me that it’s like a see-saw, and that I couldn’t be on either end of the see-saw but that I had to find a way to be in the middle. One end is negativity, anger, and rage; the other end is this naïve positivity which is based on avoidance of the truth. But the middle is where everything is in the picture and nothing is being avoided. It’s a place of true equilibrium, a place of honesty and authenticity and it’s my ongoing focus to abide in this place as much as possible.
Underneath all of this, ever since I was first diagnosed, I’ve had a sense that I can cure this disease. It’s a mysterious experience and I’ve often wondered if it’s just wishful thinking, but it doesn’t feel like it. It’s different from the ungrounded feeling of avoidance. It’s real and palpable; it’s a feeling of conviction that I can cure this disease, that it’s possible! This conviction, which is not from my mind but is almost on a cellular level in my body, says, “I can change this!” So I’ve always had this idea that I can do it, and I’ve been continually trying to find a way.
I’ve discovered over the years in speaking with other people with Parkinson’s that there are others with the same experience and conviction that I have. But for the most part they tend not to speak about this—worried that they’ll be seen as stupid, crazy, or totally in denial. Although I’ve met several other people who have this same deeply felt conviction, none of us know how to do it yet.
I went to see a neurologist about 7 years ago. At that time I was more functional than I am now, and as he observed me walking down the corridor he mentioned that for many years he had seen about 40 people a week with Parkinson’s, and that he always has the same question. When I asked him what the question was, he said, “What IS this?” It really struck me at the time, and it’s a question that I often wonder about myself. My experience is that there is something mysterious about Parkinson’s, which may be in part why it seems possible to change it. It’s a disease that is so unknown in many ways.
So one aspect of my journey with Parkinson’s has been and continues to be all about this—finding out how to change it! I’m often around others with Parkinson’s and I see not only them but also the people in their lives struggling so intensely. This disease can go on for many, many years and it’s such a confounding and profoundly challenging disease for everyone concerned.
And what is such a HUGE driving force for me is that it seems that if I can figure out how to change this, then there’s a strong chance that it might work for others as well. Oddly enough, I don’t find the strength to struggle with this question and all of the ups and downs of this disease when I look at it as a way for me to solve my own predicament. Looking at it that way just doesn’t give me any juice. But when I see this question of how to change Parkinson’s in the context of the incredible impact that I could have on the lives of the six million people who have this disease, then finding an answer to this question through the successes and tribulations of my own experience of Parkinson’s becomes something about which I’m fiercely passionate. For this I have all the energy in the world.
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