Of Course Amy Can Ride a Bike~

When I was a child, my mom read the Astrid Lindgren book “Of Course Polly Can Ride a Bike” to my sister and me. It was a story about a little girl who was not old enough to consider a bike sans training wheels and on her birthday she “borrowed” her neighbor’s, only to crash it at the bottom of a hill.   My sister and I would often use the dramatic quote: “Blood on my birthday!”…as it seems appropriate in so many of life’s situations. 😉 When I was pregnant with Madeline, I bought her the book so that she too could reference this moment and share a wink with her Aunt Leslie and me.

Today, after weeks of trying to adjust to the reality of myself in a scooter for the longer jaunts that I am incapable of walking, I finally decided I would try to ride my bicycle. With compromised balance,  dizziness, and muscle strength that won’t allow me to walk more than 10 blocks I had avoided it for over 5 years and had good reason to believe that it would not be on my plate of options this coming season. In fact, when Keith was cleaning out the garage I didn’t even recognize my bike. It wasn’t the old friend that I missed over the years… more so the stranger I didn’t want to admit I knew. It’s amazing how the mind copes with loss.

So, today (Sunday) Madeline asked if I would ride my bike with her and Daddy.  I said apprehensively that I would try. She promised she would teach me how to do it again and so we took the Mongoose off its high hooks and reintroduced it to gravity. As Keith pumped air in the tires I asked Madeline if it was strange for her to have to teach her mom these things. (Madeline often exaggerates her cuts and bruises, feigning sprains and possible broken bones in a way that recognizes how she observes my limitations that don’t go away) And she said “No Mommy, its not strange, I’ve been with you a very long time and I’m used to it.” And while Madeline has taught me many things, I knew that this experiment would stand out. I told her not to be too disappointed if I couldn’t do it, it would be no reflection on her abilities to teach. Of course I was really preparing myself – knowing that if I couldn’t do it, it was no fault of my own. Though I knew the disappointment would be great- and I feared it.

So, the bikes were ready and Madeline described how I should hop up on the seat and start pedaling. This foot goes up and pushes, while this foot goes down. She was clearly enjoying her role. Starting and stopping would be my greatest challenge, if in fact I was able to achieve balance required to maintain the motion.

And I did. And it was magnificent.

Madeline felt proud that her coaching was so effective and I basked in my ability to move faster than I had in recent memory on my own action. With each stop and start I found new confidence and the uncertainty pushed to the ground by each successive pedal. We rode to Edgemont Park and circled the perimeter twice, and though I was ready for a third we opted to use the energy for the ride home.

It was a curious feeling to cover so much ground and only be reminded of my limitations when I stopped. Getting off the seat my dizziness returned. It was almost alarming because for those moments as I propelled through the park with my husband and daughter, MS was incognito. I was in a public space acting out a part seamlessly…with no one knowing the truth but us three. What bliss.

I’m looking forward to taking this experience to Kessler when I’m assessed for a scooter. My limitations can’t be understood in a first glance. I can’t be pigeon-holed as a person who can’t walk and needs a motor to go the distance. Although at times it may be true,  I’m also the intrepid woman on her bicycle who blends in beautifully with her surroundings while enjoying the light breeze blowing past her face early on Sunday morning.

Thanks for reading~

ag

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.

I can’t play hopscotch

This week I’ve connected to a dear friend, I haven’t known in two and a half decades. And with this re-connection I find myself addicted to a Penseive-like journey that has revealed immeasurable emotions in addition to an opportunity to become reacquainted with my healthy young self. With remember-whens and photos of me that I’ve never seen, I find myself immersed, unable to look away. This need has taken on addictive qualities that are making it difficult for me to get back to 2009.

In the midst of this journey, I went outside to play with Madeline. With  joy easily found in this early spring day, we combed through the list of things she’d likes to do- those special things that she hasn’t done during the cold winter months. And while her usual outdoor playmate worked diligently inside, we searched for what I can do instead. (tag- no, obstacle course- no, jump-rope competition-no, hula hoop-no.) And though I was able to talk her into drawing on the drive-way with last year’s nubby chalk, it clearly wasn’t on the top of her list.

We held our noses because a skunk sprayed our car last night, and I tried to engage her with a drawing of the culprit, though it came out looking like a turtle. (nubby is an understatement-and you may not have noticed but a skunk has some pretty fine features)

“I know mommy, let’s draw hopscotch and we can play that together!” “Ok” I said, just assuming I could. It’s like a language one never forgets, right? And while she was bending and turning in ways that would evoke dizziness in me, I stood by and serenaded her.

What a day this has been, What a rare mood I’m in…why its almost like being in love

“Mommy, I don’t like love songs, sing something else.”

“Okay,” I said, “how’s this… I’m here, to remind you of the mess you left when you went away.. (an inside joke that only I could appreciate)

“No.” she said blankly in her cute sarcastic way (she is definitely my daughter!)

So I launched into the songs I sang to her as a baby, most notably Madeline Beatrice Adams-Gurowitz sung to the tune of John Jacob Jingle Heimer Schmidt. And we laughed as she finished the hop-scotch board.

With the joy that is reserved for single children, she went first, and second, and third. ☺ Then it was my turn. I grabbed the stone with optimistic confidence and started on a task that was at one time as natural as breathing. And though it was clear with my first hop,  I pushed on. As I jumped, I edited the film in my mind, cutting between my yearly neurological exam and each hop. A visualization that is so strong, I will remember it as if the scene played out in exactly that way.

When I was done, I sat with the realization that this simple little game is exactly what I can’t do. So I watched her for the rest of the time… counting and clapping. And while I’m sure she enjoyed the attention just the same, I withdrew to that faraway place that has consumed my last 9 days and that picture…. lying on my side, with head in hand and the classic smile that lives with me today. It’s no wonder that I’m stuck in those early years with my dearest friend from a healthier time; a me that feels simultaneously so far away and so close. I don’t want to come back. Yet I know that if I don’t find a way to absorb this feeling and make it my own, in my current day… I won’t be able to laugh with Madeline on the driveway singing songs that are mine (Alanis) and her’s (…her name is mine name too).
ag

Left Out

Since I was twenty months old I have felt left out. Everything was going along okay and then my sister was born and it really messed things up. Although I don’t remember the day, I am told that when my mom stepped out of the nursery I covered my newborn sister in talcum powder– the earliest attempt at white-out on record!

Over the course of my life I repeated that pattern. In grade school, in highschool… early college and even after I graduated- I was always drawn to friendships in threes -reliving that circumstance, creating the triad that inevitably leaves one of the three feeling not a part of things. It’s a lait motif; a constant comment for my years of therapy. I learned that I was likely recreating these scenarios to get get some resolution. In retrospect maybe it was just preparedness training.

When I got my diagnosis at 20,   that “left outtedness” was promoted  to a starring role. And while I try my best not to dwell, the reality is that there is so much that I can’t participate in. On strong days, I can say.. “but there is so much I can do”. Some days I’m not feeling so empowered. Those are the days when I can’t stop thinking about the things I’d like to do. In the summertime it feels like a regular occurrence.

The pre-baby years of my marriage were much more controlled. Avoiding heat and spending a lot of time doing what I can do wasn’t too much of an effort. (I married a man that loves the social scene of a cold dark movie theater as much as I do!) But when my daughter was born it quickly became a different ball game. Cut to today and we have a 6.9 year old pulling us outside for a wide array of activities.

My husband is happy to acquiesce to all of my daughter’s outdoor pleasures. He spends many hours playing catch, jumping rope, being tagged and “duck duck goosed”. The social ops that we are part of as parents are also new frontiers. The invitations for beach trips, the swim clubs, the Bronx Zoo excursions… the fun outdoor activities that complement every families summer calendar are ongoing. And the feeling is not only me being left out… but concern that Madeline is not getting to experience all that she should-and it takes on an energy of its own.

Yesterday we went for icecream with my husband and her friend from camp. When her friend wanted to know what flavor I’m getting, Madeline said “My mommy can’t eat ice cream because she’s trying to make her MS go away.” While I don’t expect that my new way of eating (or not eating) will make my MS go away, it was refreshing to hear the interpretation that Madeline stated so simply.

And it got me thinking more about her point of view.

Madeline doesn’t feel left out of anything. She isn’t competing for anyone’s attention nor does she seem terribly concerned when her friends are enjoying things without her. I expect when she reflects back on these summer days she will not be remembering anything but the fun she had and what we all did together.

Yet on a regular basis, I wish I could do more with her. I can’t help it. I don’t feel sorry for myself, or waste too much time thinking these thoughts… but the reality is that these feelings are here and I guess I should recognize and honor this part of my experience once and a while.

So that is what I’m doing.

Thanks for reading.

~Amy