London Calling: How I Learned to Stop Worrying and Love (the) Gigi!

I went to Europe. Really. I did. I never thought it would happen. I mean, with our enormous student loan debt we never have extra money for luxuries such as a vacation. But lucky me! I’m the granddaughter of Beatrice Goldstein Kaplan. She came to America in the 40s and left all of her wonderful family in London for us to play with.  And as a result we are in no short supply of fabulous British cousins always telling us about their comfie spare rooms and how nice we will look in them. But without tickets to get across the pond it didn’t even seem worth thinking twice about.  So when the opportunity came up to think twice, I realized that money wasn’t the only reason I resisted thinking twice.  No, the money (or lack there of) was a helpful way to avoid the other reason for not considering this vacation. That being the one that hides underneath every moment when living with an incurable, unpredictable, potentially progressive disease.

About 3 years ago, my 20+ year old MS started acting out beyond it’s normal behavioral issues. Symptoms heightened and I shortened. (And I’m only 5’2″- so I don’t have much to work with here!) Over these past years I’ve been challenged by constant dizziness, greater limitation in my ability to walk and worse of all, an inability to stand for lengths of time. Like- for example- long enough to cook dinner. But as all of us with MS do- I found new ways to cope. Not-to-say that any of it is easy. These changes are always emotional ones. But when all is said-and-done, I have found a way to live within my limits-de-jour. So long as my expectations of the day are low and I have the “bright-side” handy when I need to break it out, – I can deal.  Sorry I left the kitchen such a mess honey…you know….i have MS 😉

So when the possibility of venturing across the pond became a reality I went in to high-gear worry. I would have to come out of hiding and face the fact that I am now “it.”

Not long after our tickets were booked we started realizing that we have other close connections on the mainland. (that being Europe) Our lovely former neighbors moved to Berlin and our friend knew someone who has a great place to stay in Paris. Now how could we possibly make that voyage and not take advantage of these opportunities. But in the back of my head I’m thinking, If we don’t do it now we may not have the option when I’m less able. Oh wait. Not when; should I become less able. (Phew! Found that bit optimism in my back pocket!)

And though my adorable college professor husband doesn’t earn the big bucks (“even though we aint got money“) we do have summer vacations! So we reserved August for what we hoped would be an amazing trip.  And it was all that; for reasons planned and unplanned, expected and unexpected. And I learned a lot more than the detailed history of the Berlin-Wall falling or how something called a Shandy is a great way to experience an English Pub with an actual beer product in hand.

* * *

Tune in next time for the second episode in the series “London Calling or How I stopped worrying and love GiGi” when I will discuss my experience with MS, accessibility in Europe and my new love for GiGi – replete with photos evidence for all of the afore mentioned.!

(BTW: If you subscribe to this blog- you will be notified of when that happens. I’m thinking this weekend.. but who knows!)

Destination Unknown

While you are in the midst of pre-holiday scramble, take a moment to read my latest essay on Health Central’s MS site. My seasonally non-specific December post will not only give you a break from the stress of the holiday prep crazies, but it will also put your life in to a comparative perspective that may be comforting at the time of year when we all take stock. But that’s just my speculation. Go decide for yourself.  And return to your previously scheduled “holiday crazy” with a new perspective~

Destination Unknown

If you are reading this post, chances are good that you’ve been diagnosed with MS and have your very own diagnostic tale; a “Where were you when you heard about Kennedy, Lennon, Cobain” story. It’s often the first exchange when two people with MS meet.  “Diagnosed, 1988, only took one week after my first symptom,” or “Diagnosed last year after a decade of unexplained symptoms and dismissive doctors.” No matter how our stories differ, that day puts us on the same train; the one with no clear destination or announcements along the way to keep our bearings. (more)

Unexpected Healing- or how M&M’s can make anything easier to swallow

A week ago I accompanied a good friend to a doctor’s appointment. I’ve known her for exactly 8 years 7 months and a week. I don’t usually keep such close record of when I connect with friends but we have a timer that evolves before our eyes, reminding us of when we met. Her son was born in the same hospital a week before Madeline and we did our new mommy class together. I was going through a very difficult post-partum-oh-my-god-how-will-I-care-for my-new-baby-when-I-have-MS thing. Challenging times at best. And when I walked in the room on the second week of class I immediately felt that she would be a good person to get to know… kinda like you know a good melon. 😉 My instincts proved true and we’ve been friends since. With our husbands, we enjoy a lot of common ground. We are all in education and thus have similar interests. Of course we also enjoy marveling at how much our kids have grown since we first met, when they were little more than cute, high maintenance blobs in a carrying basket. And over the years since, though distracted by life’s happenings, we found time to connect once or twice a year. Considering how time moves when you’re distracted by your child , it seemed frequent.

Two weeks ago we gained more common ground. Linda (she’s my other Linda, btw) called to tell me that her doctor thinks she may have MS. I was stunned. I tried to keep it together to be positive and helpful when we shared this conversation. I spend so much time thinking and talking about what newly diagnosed people need and it all fell to the ground when this good friend came to me. How can she have MS!!

Linda and her husband have always been very supportive of my efforts and challenges. They’re the kind of people that are sincerely listening when you talk to them. (Awesome eye-contact… I’m sure you know the type!) And it made them stand out as friends. So, I repeat, how can this be? I replayed the tape of our friendship, highlighting the caring moments and discussions about my MS. And like that moment in a movie when the plot comes to a screeching halt and nothing is what you thought it was and you have to watch it again from the beginning with your new knowledge (The Sixth Sense or The Usual Suspects come to mind.) I went back and looked at our friendship over these years with the new perspective; knowing we would come to this point. And ultimately, I’m back at the same point. It’s just bizarre! I’ve become close friends with many people who have MS over the years. Introduced to them because of our commonality. But this is the first time a good friend of mine has been diagnosed with MS and it seems like a freak occurrence. It got me thinking about where I was when I was in her place.

Everything was different when I was diagnosed. As a 20-year old college girl, nothing in my life was permanent. I struggled with the question marks of what my future would hold, a fear that sits on everyone’s diagnostic examining table. The big difference is that I had no stability. Nothing was permanent and in experiencing this with Linda, I found comfort in the place she is today. With her husband and kids, her career and identity, she is well established. She has a wonderful support network to help her navigate this. And while she has the strength of character to get through it on her own, she also has much more than I knew in 1988. As the anxiety wells up in me, her place in life brings me relief.

Going through this experience with her, I feel good about the comparison. I want to support her through it, in ways that weren’t available to me, to be that reassuring person I didn’t know. And there is something reparative for me in that role. It’s a great time to come home with this diagnosis. There are so many treatment options, so much hope. She will begin treating the “MS” immediately; she’ll hit the ground running. With all the anxiety and uncertainty, this is truly something to feel good about. And I hope ours is a comparison that helps her, makes her recognize all that she has.  And together we can have the “Damn, that must have sucked for you!” moment.

She invited me to come with her to her new neurologist to confirm her diagnosis. It was a very powerful experience. There were many things rushing through my brain, dodging the scars, while I tried to be present for her. We managed to bring laughter to the day in spite of the obvious emotional drag to the contrary. At one point, during the familiar exam her neurologist had noticed that her one leg was weaker than the other. She wondered whether he was pushing too hard on her leg. So he turned to me for a baseline. We laughed as I told him my deal. And his response was, “ Great, you have had MS for 21 years and you would never know.” Then he noted my stick propped up in the corner. And I wondered, am I an encouraging example for Linda or a frightening one? So we left and drove right to the local CVS and picked up some M&M chasers. This is a very important part of any diagnostic experience. And there are no side effects if you practice moderation… not that we did, just saying . 😉

Quite frankly I was excited to have an MS pal. (Though I tried to keep that to myself!) While I wouldn’t wish this on anyone, I can’t help but to appreciate having someone who is already a good friend to share this experience. It makes my two decades with this disease more valuable knowing that I can use it to help Linda. And the truth is, I can heal the parts of myself that have a 21-year old hurt from the time I went through this alone, not knowing about the healing properties of M&Ms.  😉

In this introspective time (seriously, all times are introspective for me!) I reread a comment she made on my blog back in October, in response to “this-ability.”

Amy, I am a firm believer that everything happens for a reason – even if you don’t know what it is right away. It seems, though, that you were able to figure this one out quickly. And, now you are able to enjoy the parts of your life that mean the most, (without feeling guilty about falling asleep during a bedtime book.)
I am always inspired by you. Enjoy this time
~ Linda (the other one)

Because I have lived my entire adult life with MS, I have grown in ways that I wouldn’t have otherwise. I’ve seen this familiar strength and resilience in everyone I have met who endures this challenge. Looking back at Linda’s words, I know that she has that strength already and that she will do well no matter what her future holds. So Linda, text me if you need me. I will always drive over with all your favorite M&Ms. (Did you know they have coconut now? Life is rich, isn’t it?)

Hear the voice behind the words~

I was recently interviewed on blogradio by Rae Edwards of SwaggahBoi RaeDio. Please take an opportunity to listen. Put it on your ipod to hear while you commute… mill about… eat … sleep… think. Wherever it fits!

Stick Semantics

Until January of 2008 no one could tell there was anything wrong with me. Every day I left my purple house and crossed Park Street to stand on the Watchung Avenue platform and take the Midtown Direct to NYC. At Penn Station I walked up the stairs and then a few blocks, then down the stairs and up the stairs and down the stairs, and up the stairs and one block to my office. And while this was a challenge, it was something I was proud to be able to do. I have had Multiple Sclerosis since my 20th birthday. Walking and stair climbing has always been an effort for me. MS has robbed me of balance, coordination and stamina. Yet in spite of this no one would have noticed that I was different from any of the hundreds of commuters that move as one.

When dizziness was added to my MS symptom buffet, everything changed. With an increased unsteadiness even the most basic things were not a given and the commute was more like an outward-bound adventure. But I loved it; being part of this mass of silent people moving in unison toward their destination. I knew if I wanted to continue I would need something to ground me. But what were my options? A cane? A cane means old, disabled, infirmed. I’m young. A cane just doesn’t fit.

So I didn’t get a cane, I got a walking stick. Don’t get me wrong – it’s a cane, but I call it a walking stick.  So I got it home and tried it out, and the internal debate began. Could I make this part of who I am?

I was just about to turn 40 and though I had been living with a different-ability for two decades, I didn’t announce it to every one I passed. A cane, excuse me, a walking stick would do that. So I pushed myself like a kindergartener on the first day of school. Forcing myself to be outed, to show the world who I really am.

What I didn’t know at that time was how empowering this decision would be. I thought that by using this walking assistant I was admitting defeat. As if I was making a statement to the world that MS has me in some way. But what happened was really quite the opposite. The stick has given me power. With this visual recognition I brought out the best in the people around me, who treated me with concern. They recognized I had more to contend with than the average commuter. And with that, I learned how to walk proudly while carrying my big stick.

~This short essay ran in the Montclair Times during MS awareness month.. that being now!

A pregnant pause…

Deciding to have a baby when you are living with MS can be a tough decision. Or not. If you’re like me, you know you want a baby under any circumstance. Whatever the case may be, I hope that by sharing my story, I can provide what I longed for when my husband and I were making our plans; that being a positive experience to support the decision we had already made. While everyone has a completely unique and unpredictable  MS path and all-of-the-above is true for how any pregnancy might play-out, each telling offers an inside-line of possibilities.  Here’s mine.

Everything about planning to have a first baby is filled with question marks even without MS. How long will it take to conceive? (How to take the reckless bliss out of marital recreation) What will being pregnant be like? (Puking, constantly pee-ing, and walking like Frankenstein’s monster….)  Will it be a smooth delivery? (How the HECK are they gonna get that baby out of me!)  and How will it change our lives? (Will we ever have reckless bliss again?) When MS is part of the equation, the question marks are bigger, bolder and have potentially long term implications. What about all of the meds that make my life livable everyday? If I don’t have bladder control now….? Will my MS be worse after I have the baby?  Will I be able to care for a new born? a toddler?  a teenager…? Okay, wait a minute, no one should be thinking about a teenager when considering to have a baby…. although it may have a significant impact on rising populations! ☺

The year was 2000, and there were a few things I had decided already about how my pregnancy would go – I would stop my Copaxone while trying to conceive- although the prospect scared the *!#@ out of me. At that point I had been on it for 7 years and it was doing remarkable things to improve my everyday with MS. There wasn’t much that was known about the effects of the drug on pregnancy and I wasn’t taking any risks. Adding to my comfort in this decision was that once I got pregnant I would likely feel much better than I do normally. It is known that the immune system is naturally suppressed during pregnancy to allow for a foreign entity (ie. the baby) to coexist inside you.  And so, the said immune system no longer randomly attacks the precious myelin that keeps our neurons functioning healthy! (note to self: if true, explore surrogate motherhood as vocation!)

I was afraid of what my MS would look like without Copaxone or the benefits of a pregnancy-based suppressed immune system. So it was the “in-between time” that had me worried. With the over-speculation and hyper-assessing I take to anything; I read, and wrote and thought. And talked. And talked. And talked.  For me, rehashing and reconsidering any and all possibilities gave me a sense of control over any situation. Silly mortal!

So I stopped the Copaxone, (My neuro told me it would take no more than a week for it to be totally out of my system) and immediately starting working the ovulation predictors. (Say goodbye to spontaneity)  I wasn’t going to waste a moment. I knew that the quicker I got pregnant the better.  It’s a crazy game trying to enjoy the process (if you will) with so much riding on it! (if you will!) Luckily it only took us three months to conceive and my health didn’t falter.  Check.

What came afterward was all good. I had a wonderful time being pregnant. Okay, maybe that’s slightly sugar-coated. But the truth is as they predicted my immune system took a break. And all my cells came together in their pregnant bliss and rejoiced! My energy was up and I could walk farther than ever. Of course I dealt with the normal joys of pregnancy: nausea, headaches, heartburn and the inevitable transition in to the incredibly enlarging woman. But all paled in comparison to the normal MS symptoms that I had become so accustomed to.  What really tickled me at the time was that I was treated in such a way that would be very helpful in my every day life with MS. I was offered a seat wherever I went and always made aware of the closest bathroom. We went to see Chicago on Broadway and I was escorted to a super-secret bathroom in the mezzanine. Wow! I immediately began to consider ways I could develop a prosthetic pregnancy suit for just those scenarios in the future. Think of the possibilities!

When the big day came I delivered Madeline after 6 hours of labor, 2 of which were “hard” then ultimately cushioned with the once-removed feeling of an epidural. (Someone is having a baby here… though I’m not clear on who! ☺)

Then we got home and wasn’t so easy. Recovering from delivery and having to learn how to do EVERYTHING is challenging for everyone. The breast-feeding, the diapering, the clothing, the bathing, the burping, the sleeping or rather the not sleeping, all created a veritable tornado of learning and uncertainty. Luckily it was cemented together with the unbelievable love you can only know in your baby.  Keith and I spent all day and night in that first week marveling at our perfect little person. Nothing could have prepared us for that emotional magnitude. This couldn’t possibly be what everyone else is doing!

And while I was coping with post-partum depression and fear I would not be able to physically do everything a new baby required, we found the support we needed and tried to be patient that the rest would come.

16 days later was 9/11.
Whatever feeling of parental mastery we had gained shriveled in our fear of the world we brought sweet Madeline into.

• • •

When all is said and done my greatest hurdle was emotional. I never had the MS relapse that was often sited in the “literature”. And though I had challenges that were uniquely MS, none were above and beyond my ability to cope at that time. The depression that began after Madeline was born, merged with the anxiety that we all felt after that September day.  And though my pharmaceutical cocktail continues to include ingredients that address these issues, I can’t help to wonder what that graph would have looked like had those two events been further on the timeline.

When I began this entry, I thought it would be an opportunity to share my experience with pregnancy and childbirth from an MS perspective. What I hadn’t realized was that irrevocably intertwined in my (and Keith’s) most precious life experience is the residual impact of that tragic day.  It’s impossible to think of one without the other and so much sadness and resentment surrounds that pairing.

If anyone reading has questions about having a baby with MS — please feel free to contact me and ask the details that didn’t make it into this final version. Right now, I’m carried away in the other place this writing took me, trying to weed out the memories I want to magnify and lose those I long to forget.

Time Suck

Time is an abstract concept on so many levels; while precious it is so often wasted in my life. How does that happen? I read in the Science Times this past week that the brain uses times of boredom to file information.

Some experts say that people tune things out for good reasons, and that over time boredom becomes a tool for sorting information — an increasingly sensitive spam filter. In various fields including neuroscience and education, research suggests that falling into a numbed trance allows the brain to recast the outside world in ways that can be productive and creative at least as often as they are disruptive.

Maybe that explains why as I was completing my Master’s degree I had a compulsive need to search craigslist for a dining room table. Or when I need to create a budget for my non-profit I fritter time away playing word-challenge on facebook. But does that count as boredom? Isn’t that just a welcome distraction from what must be done? I’d like to think that my brain is doing something productive during those interludes of mindless fun.

I wonder how that factors in to most people’s existence. I’ve just spent the last hour or so at a local farmers market getting spelt bread, tasty white corn and new pickles. The leisurely walking so often reserved for museums or garage sales kills me. I come home too exhausted to make the juice I planned or lunch for the three of us. So how does my scar riddled brain factor in to my need for slightly stimulated down time?

Maybe I shouldn’t question so much and just let it be. After my budget is complete and my letters of outreach are written… and I do 3 (5 at the most) rounds of word challenge . I gotta get my score up!