HOLD ON TIGHT TO YOUR DREAMS

I'm back in the saddle....Happy New Year!


Dreams pass into the reality of action. From the actions stems the dream again; and this interdependence produces the highest form of living. - Anais Nin


I have been remembering my dreams. Occasionally, they involve film directors, among them Ron Howard, of whom I have never been particularly fond, and Stephen Spielberg who is in my mind a genius. Though the details were a little hazy in my directors’ dream, Spielberg and I (naturally) shared a very exciting adventure, something along the lines of Indiana Jones and the last Crusade.


Last night, I had to choose between two jobs: the last one I had in the real world, working for public television and the job before that, where I worked for an independent record company. This dream was clearer, and the images were vivid in my mind, probably because it occurred just while the alarm was going off this morning.


What is always true in these menageries of my imagination is that I am fully functional, the way it was many years ago, and I no longer have to worry about the challenges of multiple sclerosis. Occasionally, when I wake from these exhilarating dreams, I momentarily forget that I have MS. Because I can move about so freely in my dreams, there is a sense in the early-morning fog between slumber and wakefulness that maybe, just maybe, I can get out of bed in the conventional way. Just throw my legs over the side and stand up in order to go to the bathroom.


 On these days, it takes me a few moments to recalibrate and return to the reality of my everyday life. I won’t go into all the details that living with a progressive disease entails, but it can—and does—wreak havoc upon the minutia of my everyday life. Basic activities most people take for absolute granted pose considerable challenges for me.




Some early mornings, when I am lying in bed, I see a black-and-white image from an old movie of myself in bed and my double standing over me, fully functional as if he could live my life for me. We never talk, but it is obvious we are somehow the same person.



So you can certainly understand why I relish my dream life. It provides me with an opportunity to escape from reality. Now don’t get me wrong -- I am not looking for sympathy, especially not pity. But it sure is nice in the middle of the night or in the early hours of the morning to have a place to go free of the obstacles I otherwise have to face.


This brings up another issue many of us afflicted with multiple sclerosis have to face: as the disease affects our lives, to what extent must we sacrifice or at the very least adjust our real-life dreams? Personally, I’ve never had a long view of how my life was supposed to unwind. As a young person newly out of college, I was fearless. If I saw something I wanted, I went for it. Nothing stood in my way. And for about 15 years, that was the way I operated, from publishing to music to television. While there were occasional bumps in the road, I was always moving forward with my eye on the prize.


As my disease began to show symptoms and I started using a cane, some people told me to “take it slow.” This has never been my nature. So I kept going, now and then falling, but getting right back up again (the catchy and very fitting Chumbawamba song “Tubthumping” – “I get knocked down but I get up again, you’re never going to keep me down” – was constantly playing in my head). Inevitably, the disease did catch up with me. I realized I had to slow down and accept the consequences of living with MS. They say denial is a reasonable coping mechanism for facing MS or other diseases. I don't think I was ever really in denial; I was just determined to not let the disease get in my way. 




When my multiple sclerosis forced me into a kind of early retirement more than a decade ago, it was at once shocking and liberating. No longer did I have to live my life according to society’s pre-determined parameters and expectations. The Ramones song “It’s Not My Place (In the 9-to-5 World)” became the theme for this next stage of my life. Being without a traditional job was a little daunting and unsettling at first, but eventually I found a way to adapt to—and thrive in—my unique circumstances.


A few of years in, a friend of mine recommended that I become a Life Coach (see empirelifecoaching.com) and after doing some research (and soul searching), it felt like a reasonable and fulfilling part-time profession. After several years of phone and online classes, I earned credentials to be a certified Life Coach, and through my work with my clients, I find myself rewarded in entirely unexpected ways. I get to help people improve their lives and fulfill their dreams.


Just because we have a challenging disease does not mean we should not follow through on our dreams, however unlikely they may seem. Our dreams can evolve. They probably would have anyway. Are the dreams we had when we were children the same ones we have as adults? Do I want the same things now that I wanted 20 years ago? Did I ever dream of becoming a Life Coach? Never. My disease has changed me and the way I look at the world. Twenty-five years ago would I have dreamed about finding a cure for multiple sclerosis? Since I hadn’t been diagnosed with the disease at that point, chances are not likely.


Now I have to hold on tight to that dream and hope that in my lifetime it will become a reality, that some genius will discover with a reasonable solution to this wretched disease. Until that time comes (and I believe it will), I do get out of bed and embrace each and every day, appreciating the fact that I’m still here and able to enjoy what the world has to offer.


I hope to see you all soon.


Best Wishes,


Marc Fenton


Chumbawamba-Tubthumping
http://www.youtube.com/watch?v=2H5uWRjFsGc


The Ramones-It's Not My Place (in the 9-5 World)
http://www.youtube.com/watch?v=Y2bD-fgUaw0

'TIS THE SEASON

A lovely thing about Christmas is that it's compulsory, like a thunderstorm, and we all go through it together. 
Garrison Keillor



We've had Black Friday, Red Monday, and last night they lit the Christmas tree in Rockefeller Center here in New York, so I know the holidays are really kicking into high gear. No doubt, this can be a really wonderful time of year. Personally, it is my favorite. I love the spirit, the cheesy music (these are the only weeks I can fathom listening to Perry Como, Johnny Mathis or Bing Crosby), the gift-giving, all the cookies, spending time with families. Plus my birthday is in the middle of it (December 16), so it feels especially festive.  



pc

The season can be very stressful though for those of us living with the challenges of MS. Holiday time raises all sorts of issues.  We may want to take part in the festivities but the reality is Christmas and Hanukkuh or Kwanzaa can bring with them their own special kinds of challenges.  And as we all know, stress and MS are a  detrimental combination.  

There are pressures to get everything done in time, to meet all the deadlines and such – oh no, will I remember everyone on my list, will I finish all my shopping, will I mail the packages to those far away, do I have sufficient help to get it all done? Even on-line shopping, so convenient for us MSers, can take a lot out of you. 

For me, the last two years were as fun as ever; that is until Christmas itself arrived and all of the running around, getting and decorating the tree, preparing Christmas cards, and build up to the day left me altogether depleted. I was wiped out, weak and ill, not the condition I wanted to be in, to be sure, for the big day.  



So I have made a promise to myself this year: to take it a little slower and not get stressed out about everything holiday-related. Things will work out, without the accompanying anxiety. I know my wife and kids will get their gifts, and there will be a well-deserved break between Christmas and New Year’s. So we have to hold on tight, drink a little egg nog, watch It's A Wonderful Life or the original A Christmas Carol with Alastair Sim (my favorite), light the menorah should that float your boat, and enjoy the ride.  'Tis the season to be jolly.  No pressure.



Have a wonderful holiday season!



Best Wishes,



Marc
marc@empirelifecoaching.com

A BRIGHT SHINING LIGHT

"Right now, with social networks and other tools on the Internet, all of these 500 million people have a way to say what they're thinking and have their voice be heard." 
Mark Zuckerberg



The key to coping with MS, from my point of view, is to find a way to avoid pessimism, despite the daunting amount of negative information and statistics out there. About 15 years ago when I began exploring the internet, it was the wild wild west, an untamed, unknown universe, constantly evolving in surprising, occasionally scary ways (today it still is, perhaps even more so). Back then, there were bits and pieces of information about the disease floating around but nothing particularly coherent or organized. There were places called “chat rooms” where one could interact with other people facing the challenges of MS; if you poked around you could find people with whom you might anonymously discuss some of the worst aspects of living with the disease. The problem at the time was that, while I was relieved to find some fellow travelers, I kept encountering considerable complaining and whining and self-pity. At first I experienced a certain amount of solace but then I found myself getting very agitated and bummed out.



Today there is more information than is possible to process available on the internet and, fortunately, it is far better organized. Yes, we have tamed it a bit and more recently, I have spent many hours of many days reading all the articles, postings on Facebook groups and in Twitter, the dozens and dozens of blogs (of which I am one), and valuable, informative web resources (“MS Views and News” (http://www.stusviewsandmsnews.blogspot.com/), “Patients Like Me” (patientslikeme.com), “Wheelchair Kamikaze” (http://www.wheelchairkamikaze.com/), among many others).  However, I find myself constantly conflicted. While I want to stay informed and educated, I don't want to define myself by and through the disease by obsessively reading about it. I promise you, I must live with MS constantly, and there is no way for me to be in denial about it.



Then where do we draw the line? Of course, this is such a personal issue. Each of us must find a balance between our natural impulses to understand the realities of multiple sclerosis and finding people with whom we can bond with and share our unique experiences and living our lives in fulfilling ways without the psychological intrusion of the disease. This becomes increasingly difficult as many of us experience the harsh effects of an unpredictable, progressive disease. We make endless adjustments to accommodate our changing needs. Thus, we must redefine, much more than otherwise healthy people, who we are and what we expect to accomplish in our lives. While it is more challenging than ever to set and follow through on goals, there is still the basic gratification that comes from accomplishing basic everyday activities, even a simple task like tying one's shoes.  



So we go on the internet now and then and are grateful for the plethora of information and the freedom we have acquired to interact with our peers. Still, we have to be careful about treading in too deeply and becoming immersed (dare I say drowned) in in an over-abundant electronic universe. We must allow ourselves the space to BMW (bitch, moan, and whine) or shout some appropriate profanities should that be our pleasure (if you ever watched “Lost” on TV, the character Sawyer had a delightful way of saying "son-of-a-bitch," which works well for me). Once we vent our frustrations, we have to remember the delights we can still experience. Sure, MS has taken abilities from me, but it can't steal everything. I won’t let it. Despite my challenges, I still like to watch sunsets, go to the movies, listen to my favorite music (Beach Boys' “Pet Sounds” today), savor a good glass of wine or an iced cold beer. Choose your pleasure. Do what it takes. Get out there and live your life the best way you can. You are worth it.

Have a great couple of weeks.

Peace,


Marc
marc@empirelifecoaching.com

THE DOCTORS AND ME: A TRAGICOMICALLY TRUE STORY PART 3 - THE SAGA CONTINUES

Hindsight gives you 20-20 vision or at least after time passes, one acquires some clarity. At any rate, the events of about 12 years ago seem much clearer now than they did at the time, when life with MS was getting very scary. I had MS for about eight years at that point and Dr. A decided it was time for me to try Avonex. The disease was progressing, however gradually, and it was time to take action.

To alleviate some of the side effects of the Avonex, Dr. A also put me on a course of oral corticosteroids - Prednisone. And this is where the situation took a disastrous turn. The Prednisone seemed to intensify all of my symptoms: in my mind, the numbness and tingling became more severe. Plus I couldn’t sleep. Never the best sleeper in the world, suddenly I was getting just a few hours of sleep a night. So I started to take Ambien to help me get some rest. After three days, I remember calling Dr. A (I was calling him a lot because I really felt unhinged) and asking him if I was in danger of becoming addicted. He told me the most important thing was to get some rest and not worry about addiction. He was right, clearly addiction was never a problem because I would spend the next decade relying on Ambien every night to get a decent night’s sleep.

Between the effects of tapering off the Prednisone and not sleeping, I felt further removed from reality as I had known it. All this was happening while I was trying to maintain a semblance of normalcy at my full-time job and home life, where we were raising our baby girl. Looking back, I really don’t know how I did it.  Joining a support group helped some, but it also had the effect of being in an environment where people were talking about MS all the time when I wanted to forget I even had the disease.

For a couple of days, I called in sick to work and just stayed in bed under the covers, with the curtains closed, in the dark. And while I never contemplated anything as dramatic as suicide, I did feel as though I had a glimpse of the “dark” side, one I had never expected to see in my entire life. As I began to feel as though I was hitting rock bottom, I did something I had never imagined doing before: I started to see a psychiatrist. Which was surprising for me since I’d always thought shrinks were for people who really had problems, who were messed up, like my brother, who could never get his life together. And then it dawned on me: I really had a problem, didn’t I? And all of this is amazing because it wasn’t the disease creating the issue, but all the stupid meds I was on to supposedly make me feel better.

I soon learned that finding the right psychiatrist was like finding the right life partner. The chemistry had to be right. So on my third try, after meeting with a couple of old farts who were strict, by-the-book types who wanted to know all about my childhood when I urgently needed to discuss my current crisis, I found Dr. Jane Epstein, the woman who, without getting overly dramatic, helped save me. 

I spent six months in the care of Dr. Epstein and in the end I was so much better for it. She became my hero. I’ll never forget when we were discussing my support group. I told her I felt bad for the people who didn’t have family or friends to help them. I was fortunate to have those supports to lean on and to turn to for help. Dr. E looked me in the eye and told me, “You don’t have those things by accident. You have them because of who you are.” Wow. Those words have stuck with me ever since. Thank you Dr. E.

So, the short of it is: Life can get better. Yes, the disease has progressed but psychologically I'm in a much better place.  We all have to find our own special way to improve our lives and make them better.

Have a great week.

Peace,

Marc

marc@empirelifecoaching.com

914.715.9496

KEEPING THE FAITH

It is all about hope, isn’t it? I mean, the reason I even invest myself in these remedies and, believe me, I have tried most of them (no bee stings). A few years ago, my son Lu’s friend Oliver, around seven at the time, just said to me, “You should be able to walk. You can stand, and if you can stand that means you can walk some day.” I just wanted to give him a hug.  How wonderfully naïve and, yet, so simply optimistic.

If you’re looking for a remedy, as though it could be in the dumpster in the alley next to your building or in one of the offices in the Empire State Building or buried in Central Park somewhere, it’s just a matter of finding it. You become anxious. It might be a result of desperation, hope, whatever you want to call it. You just get tired of the damn disease doing its business, progressing.

So, when someone comes to you and says they are a healer, maybe you listen. More than you might have when you were a young healthy buck. Now, you take the remedy more seriously than you might otherwise, say, if you did not have a progressive disease. A healer, wow! Another example of an approach I would never have dignified in a previous life, before MS. But since life as I currently know it has become so challenging, I need to give healing more credibility than I might have pre-diagnosis.

What I do know is this: As far as my understanding of them, in our culture, healers are often Native Americans, mystics who possess a power, almost magical to “heal” people’s usually physical ailments. I like the concept, though I’ve never felt comfortable abiding by it myself. The other image of healers, right or wrong, is that of the charlatans, con men usually associated with organized religion who would claim to have special God-given powers that enable paralyzed people to walk or cancer patients to go into remission.

Let’s face it, though, “healing” is appealing conceptually. Seriously, who would not want to let someone run their hands over your body, not even touching you in order to make you feel better?  No drugs, no needles, no visits to cramped doctors’ offices. As someone who does not believe in God or any organized religion, however, this was going to be a challenge. I knew it. The healer, an acquaintance of my mom’s and closer to her age, believed in her skills and, further, she was altogether into astrology, the stars, the moons, their alignment and impact on our lives. This was an approach I had always been skeptical about, to say the least.

And so for several months, I invested myself in the power of the healer. I met her in person and she sincerely believed she could help me. Subsequently, we talked over the phone and she told me to set aside a specific time each day when she would be concentrating on me in order to feel her energy. I viewed this as a major step in my personal development

When my time with healer drew to a close I had learned to relax more and breath better, concentrating on healing and ridding myself of the disease: the experience was not unlike meditation, which I have also tried. And I really wanted the process to work, the healer wanted her skills to work. But, alas, for all of our effort, I never felt myself getting better. Which isn’t to say it wouldn’t work for someone else; it just didn’t work for me.

So I keep plugging away, taking the newest best medicines, exercising as much as I can and planning for the day when I will walk again.  Because if I can stand, shouldn’t I be able to walk?

This all made me think of an old Billy Joel song, "Keeping the Faith": http://www.youtube.com/watch?v=U2pU0QJkMck

 Have a great week!

 Peace,

 Marc

 marc@empirelifecoaching.com

 914.715.9496

THE DOCTORS AND ME: A TRAGICOMICALLY TRUE STORY (PART 2)

When I last left you, I had just gotten under the care of Dr. “A,” who was supposed to be the best of the best.  I wanted and deserved the best of the best, didn’t I?  What I learned, unfortunately, was that reputation does not necessarily translate to superior medical care.  To be honest, I didn’t really have a clear perspective on what made a good or bad doctor. I hadn’t been to a doctor since I had needed a pediatrician (for mono and many of us now know about the connection between mono and MS).  So I went to Dr. “A” for a few years and it was fine.  I was progressing very gradually, still ambulatory.  And yet Dr. “A” put me on Linomide as part of a study.

Screeech!  Hold the phone!  At this point last week, while I was writing this blog, I was struck by yet another in a long series of medical events that are effects of the disease but not a manifestation of the disease itself.  I had inexplicably been running low fevers for a few days. My wife had accompanied me to the ER in our neighborhood on the first night to nip what we thought could be an infection in the bud, but the doctors had found nothing.  Two days later we went back: my above-and-beyond-the-call-of-duty wife had examined my nether region that I told her had been a little “strange” and discovered a “red sore the size of a baseball.”  So we went back to the ER and this time they diagnosed an abscess on my bottom, the result of sitting on it all the time (dammit).  The abscess had been causing the fevers and altogether draining my energy. To our relief, I was discharged very late Wednesday night. We were incredibly happy that I did not have to stay in the hospital.

Little did I know.  So I was discharged and put on a regimen of antibiotics that unbeknownst to me would wreck my digestive system for the next four days. I will spare you the details, but a different woman than my darling Alida would have left me after the agonizing weekend we barely survived. Now remember, this was not the MS but rather a side effect of the disease.  When I went to a doctor for a follow-up on Monday and told him about the bowel problems, he said something along the lines of “Well, you can get an over-the-counter remedy,” which I did immediately. Problem solved. Why couldn’t the ER doctor have mentioned that? It would have spared us a tremendous amount of pain and suffering.

This all brought to mind a song I discovered when I was going through a particularly difficult drug-adjustment period roughly a dozen years ago: The Verve’s “The Drugs Don’t Work” (see link below):

                The drugs don’t work

                They just make it worse

                And I hope I see your face again

The antibiotics are finally having a positive effect, but, man, for a few days they sure made me feel worse. The line in the Verve song about seeing your face again is the singer’s way of saying, I just want things to be the way they were, before all these side effects of side effects kicked in, when I can appreciate the beauty in life rather than feeling as though I was barely clinging to it.

I’m happy to say I’m getting better and feeling stronger every day, but it’s been a rough ride. I will not be defeated and will return soon to share with you more about the doctors and me and life with MS in the Big City. 

Until then,

Stay Gold,

Marc

marc@empirelifecoaching.com

http://www.youtube.com/watch?v=bR8XH3R95xE

THE DOCTORS AND ME: A TRAGICOMICALLY TRUE STORY (PART 1)

Everyone has their own story about how and when they were diagnosed with multiple sclerosis and the subsequent turmoil that ensued. Like the disease itself, the process of diagnosis can vary wildly, taking from days to months to many years. Some people are convinced they have MS, but a doctor has never told them for sure. This is my story. Taking a title from a classic spaghetti western, you could call it “the good, the bad, and the ugly.”

I was diagnosed with MS more than 21 years ago. I had been experiencing numbness in my right pinky and right leg. At first I attributed these symptoms to over-doing it at the gym, but after a few weeks with no improvement, I made an appointment with the family GP in the town near New York City where I grew up.  I was 25 and hadn’t had a reason to go to the doctor since I was a teenager. He prescribed an MRI, which I endured a few days later, the first in what would become a long series of being stuck in a tube with the noise of what seemed like loud clanging of pots and pans right next to my head. 

I’ll never forget the day the doctor called me at work to tell me the results: "You have either Lyme disease or multiple sclerosis."  Just like that, over the phone.  Not: “Why don't you come to my office so we can go over the results.” What an insensitive asshole. And somehow I knew: it wasn't “either or.” I had multiple sclerosis. Like the days when John Lennon and Elvis Presley died or when I met the love of my life, this moment was forever locked in my brain.

All I heard the doctor say was “MS.” Immediately, visions of wheelchairs and walk-a-thons and bike-a-thons floated through my brain. And I burst into tears, bawling like a baby, feeling fear and hopelessness I had never experienced before. After the initial shock, I met with a neurologist who confirmed the MS diagnosis. Then I moved on to a lovely MS specialist from Australia who wanted to put me on a brand-new MS drug called Betaseron, which was the first medication created for the sole purpose of treating the disease.  Not a cure, mind you, but a way to slow the damn thing down. 

However, taking Betaseron meant three weekly injections and since my symptoms had gone away and I felt like my old self again, it was difficult for me to bear the prospect of injecting myself so often. Besides, the MS doctor told me I had a “relapsing-remitting” form of the disease that would remain that way for the foreseeable future. According to her, I was going to live a happy, normal life, and the disease would not interfere with any day-to-day activities. And she thought the way research was headed, there would be a cure in about 10 years, making it harder still to contemplate needles. Looking back on her analysis, I have to laugh: 10 years, 10 years.  If only it were true.

After a number of fits and starts, I ultimately made my way to one of the premier MS specialists in New York City. As these things go, he had come highly recommended from a friend of a friend who knew someone who had MS. What can I say about this doctor except that he was one of the best-known researchers in the city with one of the worst bedside manners I’ve come across in my entire life. If I could just get back all the hours I spent waiting in his waiting room, I could take a vacation or do something more useful with my time. As it was, the time I spent under Dr. A’s “care” was some of the most horrific of my life. But I lived to tell the tale, more of which I will share with you next time in “MS in the Big City.”

Have a great week.  

Stay cool,

Marc

marc@empirelifecoaching.com