Tuesday, October 25, 2011


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.

Tuesday, October 11, 2011


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 na├»ve 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!