Tuesday, May 29, 2012

MEMORY, LOSS AND KEEPING THE FAITH


“The backward glance is distorted by the lens of the present….Memory distorts memory. Is all memory simply the application of narrative to past events, and is it only human and coherent to do that work?”  Dana Spiotta, Stone, Arabia

When I read the novel Stone, Arabia last year, some passages about memory really grabbed me. The author remarked on how we can never actually remember anything perfectly. Because the narrator’s mother suffers from dementia, she is trying to piece together fragments from her own past. She appears to be saying that we are taking experiences and creating narratives, using words to describe them. To me, that is part of why no two people can ever remember anything exactly the same way. We each possess different vocabularies, histories, and contexts for what we see, hear, and taste. One person’s cold can be another’s hot even when the temperature is 60 degrees.

One of the more complicated aspects of coping with multiple sclerosis is that it can be tricky to put into words precisely what we are encountering. After all, so much of what we are forced to face comes down to the loss of things we once had in the past: of vision, touch, mobility, taste, and so on. To those of us in the know, we have an elemental sense of what is happening, but finding the right words to describe this experience can be woefully elusive. I suppose it can be a little like trying to describe what it is like to grow old. But unless you are going through it, you don’t really know what the experience is like. Mere words can be insufficient to describe what it feels like to live with the disease. Which is part of why the MS Society holds “you look so well” support groups. To the observing eye, there are no symptoms, nothing to put into words. But we know better, don’t we? Worse case scenario: on the inside we can actually be going through hell.

So when we try to describe our symptoms to our doctors in a way that accurately represents the disease, we use words in relation to what we believe “normal” used to be. Beyond the physical aspects of the disease, there are the emotional ones, too: the constant readjustments of our expectations. How do we put into words the aspects of the disease one cannot touch or see: the bitterness, the anger, the frustration that can be a regular part of living with MS?

This most often arises from the “not knowing” what our futures will hold. Unless we are in therapy (been there, done that), we are left to ponder the future of our fates in relation to our pasts. We can have conversations, the words circulating around in our heads, about what we once had, where we are now, and what the future holds for us. Ah, yes, the “future.” I don’t have these thoughts all the time, mind you, but I feel we MSers have them more than “regular” folks, mainly because the future is so uncertain. In what condition will I find myself next year, in five years, or ten years? These thoughts can be quite daunting, even if the future of research and pharmacology looks brighter and brighter.  

What are my limitations? How long will I be able to walk to work, ride my bike, throw a ball around with my kids. I never thought him much of a philosopher, but Billy Joel sang some meaningful words back in the day, “the good ole days weren’t always good and tomorrow’s ain't as bad as it seems.” 

We shouldn’t harp on what we’ve lost and try not to fret about what is going to happen tomorrow. We’ve got to live in the moment and make the best of the time and situations we still have. An old Latin phrase, carpe diem, works best for me: seize the day!

Have a good couple of weeks. Stay cool!

Peace,

Marc

Billy Joel’s Keeping the Faith
http://www.youtube.com/watch?v=U2pU0QJkMck

MS MEMORY AND WHAT I LOST


“The backward glance is distorted by the lens of the present…Memory distorts memory. Is all memory simply the application of narrative to past events, and is it only human and coherent to do that work?”  Dana Spiotta, Stone, Arabia

When I read the novel Stone, Arabia last year, some passages about memory really grabbed me. The author remarked on how we can never actually remember anything perfectly. Because the narrator’s mother suffers from dementia, she is trying to piece together fragments from her own past. She appears to be saying that we are taking experiences and creating narratives, using words to describe them. To me, that is part of why no two people can ever remember anything exactly the same way. We each possess different vocabularies, histories, and contexts for what we see, hear, and taste. One person’s cold can be another’s hot even when the temperature is 60 degrees.

One of the more complicated aspects of coping with multiple sclerosis is that it can be tricky to put into words precisely what we are encountering. After all, so much of what we are forced to face comes down to the loss of things we once had in the past: vision, touch, mobility, taste, and so on. To those of us in the know, we have an elemental sense of what is happening, but finding the right words to describe this experience can be woefully elusive. I suppose it can be a little like trying to describe what it is like to grow old. But unless you are going through it, you don’t really know what the experience is like. Mere words can be insufficient to describe what it feels like to live with the disease. Which is part of why the MS Society holds “you look so well” support groups. To the observing eye, there are no symptoms, nothing to put into words. But we know better, don’t we? Worse case scenario: on the inside we can actually be going through hell.

So when we try to describe our symptoms to our doctors in a way that accurately represents the disease, we use words in relation to what we believe “normal” used to be. Beyond the physical aspects of the disease, there are the emotional ones, too: the constant readjustments of our expectations. How do we put into words the aspects of the disease one cannot touch or see: the bitterness, the anger, the frustration that can be a regular part of living with MS?

This most often arises from the “not knowing” what our futures will hold. Unless we are in therapy (been there, done that), we are left to ponder the future of our fates in relation to our pasts. We can have conversations, the words circulating around in our heads, about what we once had, where we are now, and what the future holds for us. 

Ah, yes, the “future.” I don’t have these thoughts all the time, mind you, but I feel we MSers have them more than “regular” folks, mainly because the future is so uncertain. In what condition will I find myself next year, in five years, or ten years? What are my limitations? How long will I be able to walk to work, ride my bike, throw a ball around with my kids. These thoughts can be quite daunting, even if the future of research and pharmacology looks brighter and brighter.  

I never thought him much of a philosopher, but Billy Joel sang some meaningful words back in the day, “the good old days weren’t always good and tomorrow’s not as bad as it seems.” 

We shouldn’t harp on what we’ve lost and try not to fret about what is going to happen tomorrow. We’ve got to live in the moment and make the best of the time and situations we still have. An old Latin phrase, carpe diem, works best for me: seize the day!

Have a good couple of weeks. Stay cool!

Peace,

Marc
marc@empirelifecoaching.com 

Billy Joel’s Keeping the Faith
http://www.youtube.com/watch?v=U2pU0QJkMck

Billy Joel’s Keeping the Faith
http://www.youtube.com/watch?v=U2pU0QJkMck

Wednesday, May 9, 2012

THE GREYS OF LIVING WITH MS - A TWIST OF FATE


It seems like everywhere I turn these days I see grey: the erotic novel 50 Shades of Grey is a monster best-seller that Saturday Night Live poked gleeful fun at this past weekend (see below), and Liam Neeson’s film The Grey arrives on video this week. Is it a coincidence then that my mind has been turning around the color grey and its relation to multiple sclerosis? Or some kind of destiny?

Let me begin by explaining that when I was younger (I am 47 now), I found it easier to reduce my understanding of issues and relationships to black and white. One politician was good, and another was evil. If a marriage ended, it had to be one person’s fault, the other the victim; I didn’t have a sense of mutual culpability. It sure made life easier: I didn’t have to analyze or understand the greater complexities of life. 

I believe I turned a corner when my wife’s co-worker’s family was described a few years ago as perfect, devoid of any problems. It just didn’t seem possible to me: how could a family not have problems, how could everyone be perfect? Now I’m not saying I wished this on anyone, but when a divorce recently rattled the family, I wasn’t especially surprised.  Life doesn’t usually spare a family from some measure of pain or adversity. Very few just get off, have a “white” life. After thinking it through, I realized, sure, some have it harder than others, some easier, but generally life is grey (even amid the spectacular color of spring here in the Northeast).

This is a long way of saying that for those of us with MS, life can be greyer than it is for people who don’t have to live with a chronic disease. We get to ask ourselves questions like: Has the disease made me a better person? Is it a gift that has afforded me an opportunity to grow in ways I never would have otherwise? Like many of us these days, I do a fair amount of reading on the Internet and regularly encounter this attitude, one I cannot embrace. There are many people sharing quotes about perseverance, pictures of  kittens and positivity.  On the one hand, I get it: If it doesn’t kill you, it will make you stronger. On the other hand, I can’t get all mushy about a disease that picked me. I played no role in the decision-making process that led to my contracting the disease: it was just, as Bob Dylan said, “a simple twist of fate” (see below). I didn’t choose MS; MS chose me.

The flip side of all the positivity on the Internet is anger about the disease that has changed our lives in so many unexpected ways. But I personally find anger to be a negative energy, counterproductive to the way I want to live my life. Which isn’t to say I don’t get angry about it. I get pissed off, no question. I just cannot let my anger be a guiding principle.

A couple of years ago, an MS friend directed me to an exclusive on-line group for people with the disease. They took pride in saying it was a “unicorn-free zone,” no new-agey optimism allowed. To be fair, the group was a place where people could vent about the challenges they had to face, not a bad thing to be sure. Perhaps I misunderstood the group’s mission, but there was so much negativity and snarkiness that I ended up feeling bummed. Needless to say, I eventually lost interest. Didn’t Woody Allen use a quote from Groucho Marx in Annie Hall to describe his love life, “I wouldn’t want to join a group that would have me as member”? Well, that group anyway.
Unfortunately, we can’t quit the MS club. We each have to find ways within the boundaries of black and white to cope with the challenges brought about by the disease.  I don’t use the word grey in the context of MS to say MS makes life colorless. Not at all. It just makes it even more complicated. The way life would be without the disease but more so.

So keep fighting the good fight. Make every day count!

Peace,

Marc

914.715.9596
marc@empirelifecoaching.com

Bob Dylan Simple Twist of Fate
http://www.youtube.com/watch?v=7-YjEGyaRGc 

50 Shades of Grey/SNL 
http://newsroom.mtv.com/2012/05/07/50-shades-of-grey-snl-saturday-night-live-video/