MS, FRIENDSHIP AND THE TIES THAT BIND

So many faces in and out of my life

Some will last
Some will just be now and then

Life is a series of hellos and goodbyes

I'm afraid it's time for goodbye again – Billy Joel, “Say Goodbye to Hollywood”


One of the most significant aspects of coping with the effects or mere fact of multiple sclerosis in our lives is the reaction of the people when they learn we have it. The response from individuals close and far can vary widely. I’ll never forget when I was at my last job, following a day out sick as a result of a high, debilitating fever, I decided to tell my boss (the woman who hired me about six months before) that I had MS. I hoped she would be sympathetic to my situation.  Instead, she made it about herself ("How could I do this to her?") and was shocked that I hadn’t been forthcoming in the first place. Our relationship had always been turbulent, but after that incident, there is little doubt in my mind that she treated me differently, in a negative way. Unfortunately, we always have to worry about how people in all areas of our lives -- supervisors, colleagues, friends, relatives, neighbors -- will respond to discovering our "dirty little secret."


Many years ago, shortly after I was diagnosed, a friend from college with whom I had always been very close reacted to news of my illness with shock and confusion. My wife is convinced he couldn't cope with the fact of my disease. Our relationship deteriorated quickly after I told him about it. Though we'd been best friends for many years, we fell out of touch very quickly thereafter, despite his living just a few hours away. Clearly, physical distance was not why we went our separate ways, a fact that still pains me today.


I’ve been pondering the general nature of friendship as a result of recently reconnecting with another old college friend via Facebook. When we got together for lunch the other day, we picked up precisely, and reassuringly, where we had left off some 24 years ago. I was extremely grateful that my obvious disability didn't freak him out (I did prepare him on the phone, but still). Despite my general comfort living with the disease, you never know for sure when it is safe to divulge. And so much depends on who you choose to tell; from my personal experiences, some people can handle this news; others, not so much.


Those of us living with MS have to accept whether or not to share a unique, often damaging, secret with friends, family, co-workers, even if we "look so well." For many of us, it can feel as though we are, as the cliché goes, "circus clowns smiling on the outside but in tears on the inside." By letting the metaphorical cat out of the bag, our vulnerability reveals itself. We are faced with choices about who we can and cannot tell about our disease; in the process, we learn important lessons about ourselves. Still, it can also be liberating to find out who our true friends really are. And we can make new friends, too, by joining a community of MS patients either locally or via the internet. Whatever would we do without the electronic superhighway?


Enjoy the spring. Keep fighting the good fight.


All my best,


Marc
marc@empirelifecoaching.com
914.715.9496

"Say Goodbye to Hollywood"
http://www.youtube.com/watch?v=47PtUvHIQpk

VIAGRA: SECRET REVEALED

“Medicine sometimes snatches away health, sometimes gives it.”
 - Ovid 



Multiple sclerosis is the disease that keeps on taking. It takes away our mobility, our basic functions, touch, feel, bladder control, and diminished sensations.  We take medications to treat the symptoms, to prevent the progressive disease from progressing.  Sometimes, the side effects of these drugs can be more severe than the disease itself.  Oh man, when I was on steroids (prednisone, dexamethosone, oral, intravenous), it really sucked: the sleeplessness, the withdrawal, the highs, the lows, the feeling that I was being electrocuted.  We can invest so much faith in these medications, hoping upon hope that maybe, just maybe, they'll be beneficial.  I just finished a year-and-a-half tour with Tysabri.  Did it work or didn't it?  I couldn't say for sure, but my doctor was concerned about PML (the scary brain infection).  Onward ho to Rituxan.



Occasionally, we get a little something back, as evidenced by the following experience: When it comes to intimacy, the disease has caused what is, from my understanding, a not uncommon effect on my sexual function.  What is the number they name in the ad for men who live with the issue, MS or no?  20,000,000 men are using it, this little pill called Viagra.  Add this one to the long list of medicines and treatments I never expected to be using.  The affliction it treats is commonly known as ED (erectile dysfunction).  I didn't know the official name for it until I heard an ad on the radio a while back talking about a remedy for "ED."  The reason I am going public with this secret is that I recently noticed an uptick in over-all function (not just down there) whenever I use Viagra.  I even notice a little more energy the next day at the gym.



So, being the modern guy that I am, I went on the Internet and Googled "Viagra MS" to see if there is anything to my little theory and, lo-and-behold, what did I find but the results of a study on mice published last year describing the benefits of Viagra for restoring function.  Read about it here: http://www.sciencedaily.com/releases/2011/05/110519090354.htm.  Of course Stu at Stu's Views and MS News was on this one last year shortly after it was published: (http://wwwmsviewsandrelatednews.blogspot.com/2011/05/viagra-could-reduce-multiple-sclerosis.html). Beginning this week I'll be taking a generic form of Cialis, a daily pill that contains the same active ingredient (tadalafil) as Viagra to see if I can get the benefit all the time.  What this means for women with MS I am not entirely sure.  



My other little secret: I am tapering off Baclofen.  Why, you ask?  Well, I got thrown out of whack when I slept through the night.  Usually, I take a Baclofen along with Tizanidine and Clonozepam when I wake up in the middle of the night.  Instead, I took the combination when I woke up.  Five hours later I went to physical therapy and had the best session I've had in months, since last summer.  Crazy, right?  Then I remembered the reason I stopped taking Baclofen many years ago: It made my legs heavy and, thereby, more difficult to walk.  I will live with a little more spasticity if it might make it easier to walk.



Here's the thing: we're always hoping to somehow get better, even completely recover, as unlikely as the possibility can sometimes seem.  Our anxieties can interfere, too. We may be willing to try anything, hoping to improve our condition – or nothing at all, out of fear or denial.  We each have our own ways of coping.  Myself, I've always kept an open mind. Hey something's got to work, right?  And I am fortunate enough to have a doctor I can trust like a brother.  But in the end, we must be our own best advocates and remain aware and informed in order to make decisions that keep our best interests in mind.

Be well,

Marc
marc@empirelifecoaching.com

IT'S NOT YOUR FAULT, IT'S NOT MY FAULT


"Do not think of your faults, still less of other’s faults; look for what is good and strong and try to imitate it. Your faults will drop off, like dead leaves, when their time comes."
- John Ruskin, English writer and critic of art architecture and society (1819-1900)



Many years ago, when I was still part of the 9 to 5 world, I was going up in the elevator to work when a woman, a complete stranger, asked me why I was using a cane. Usually I am uncomfortable with such bold invasions of my personal space. However, on this occasion, I told her directly, “I have multiple sclerosis.” Her response surprised me: she said, “it must be so hard for your mother. I know because I have a child with a disability. We feel so guilty for bringing you into the world.” Wow - not the response I had been expecting.

My disease can be extremely difficult for my mother to cope with. She often acts so responsible because of the monumental challenges I face on a regular basis. 

On the one hand, I am fortunate to have a person in my life who cares about me so much. My mother is wonderful, a considerable part of why I am the strong, determined individual I am today. But her concern has its own consequences that I am certain she never intended. While we have a mostly honest, open relationship, we each protect one another. For instance, when I am facing some of the most severe difficulties of my disease, I never want to tell her all of the most painful details because I know she’ll end up worrying even more than she already does.

Conversely, I know she has problems of her own (her husband, my dad, passed away last year; and she has chronic back and stomach troubles, which she never fully reveals to me, among other issues). She is primarily concerned with preventing me from worrying or stressing more than I have to. She realizes stress can be a factor in the evolution of MS, and she doesn’t want to say anything to adversely affect me. While I understand why she does this, I don’t want to be protected just because I have a disease.


 
If the finger of responsibility has to get pointed at anyone, I suppose it should be pointed at myself. Back in high school when I was a senior, I had a girlfriend who was older than me and a freshman in college. I visited her in the fall of her first year away and found out she had been cheating on me. The shock of the situation caused me to sleep in the bed of one of her friends who had not washed his sheets in weeks, during which time he had mononucleosis.
 
Many of you know about the triggering affect mono can have on multiple sclerosis. When I look back on this time and the fact that I, too, came down with mono shortly thereafter, it seems especially clear how the disease was launched in my system. So I can blame my ex-girlfriend with a friend whose bed I slept in back then and take some responsibility myself, but the reality is that I developed MS truly and somewhat randomly. I was predisposed to it anyway, right? It has been the hand I’ve been dealt. I have come to terms with it, for better or for worse, over the course of living with it for over 20 years. It’s still amazing to think: Wow, one simple, innocent moment can have such a devastating impact on the rest of one’s life.

  

As much as I ask my mother to stop worrying, and convince her I am going to be all right, she just can’t do it. And I feel guilty, too, for having this impact on someone I care about. So, mostly out of love, we protect one other from the worst aspect of each other’s lives. But, truthfully, the worst facts do get revealed. They are unavoidable. Even though we don’t want to hurt the ones we love, we can't live in complete and utter denial and secrecy even if we want to. The truth always wins out.



Without question, living and coping with multiple sclerosis can affect everything, especially our relationships. It ends up shaping our lives in unexpected and mysterious ways. None of us asked for this, and so we are constantly adjusting, physically and emotionally. Some relationships suffer. One of my best friends from college drifted away, unable to cope with the effects of the disease on my body. His loss. We learn who our true friends are. And if we keep ourselves open, the disease can also introduce us to people and experiences we never would have expected. I have friends now, as a result of the disease, who are very important in my life. With that said, just because a person has MS, doesn’t mean they will automatically be compatible with you. People who are annoying are still going to be annoying.



So my mom and I will continue our dance, the one brought about by MS. And we will adjust, as we have over the course of living with it, to the physical and emotional hardships we face, part of a family who possesses the facilities to support one another and, most of the time, to navigate the complex challenges raised by the disease.

Thanks and be well,

Marc
marc@empirelifecoaching.com

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