Monthly Archives: May 2009

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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

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Find Me In Fatigue

Fatigue is hands down the most difficult MS symptom to experience and explain. While all invisible symptoms defy description, finding words to convey the feeling of this type of exhaustion is not easy. Because everyone thinks they understand “being tired,” it is particularly helpful to draw a line of distinction between that and this experience. So I will try to do that… words are my greatest ally, after all.

When I was first diagnosed in 1988, long before any disease modifying drugs were available to treat MS, I knew full-on fatigue. This neurological experience isn’t anything like being tired. It consumes you in its grip. It’s long fingers wrap around you and suffocate your being- robbing you of your sense-of-self. Each and every cell struggles to endure and with that, is a disconnect from all that defines you. It lives in you no matter what you do. It doesn’t even require physical movement to take hold. Just sitting and reading a book or playing scrabble- any level of concentration would be fuel for exhaustion. My memory of my time with fatigue is not one I care to revisit. It was a time with no hope, filled with fear of what role this thief of my personality would play. Trapped in side my worn-out body, I could not imagine what would become of the effervescent me.

And to make matters more challenging, I was surrounded by people who tried to tell me that they “get tired too” making me more isolated and angry than ever. Living with MS is a tough ride, but having to constantly explain yourself, defend yourself even, makes it even harder. Copaxone has allowed me to live life mostly free of fatigue, so I was caught completely off guard last Sunday when it reared its ugly head.

That day I pushed myself hard. Not by working out, or riding the Lifecycle at the gym of which I wish I was a member….. just by going to the local art fair searching for that elusive hand-crafted mug. Walking around Art in the Park (ing lot) at the Montclair Art Museum was enough to do me in.

But let’s talk mug… a welcomed distraction! This mug of mine needs to be special. It’s the one that feels perfect as I wrap my fingers around it and support it with my palm, warmed by the contents. The one that deserves to bring that ideal cup of java to my anxious lips. Yes.. I wax poetic here. I love coffee… and I need my perfect mug to have and to hold. My last victim found its fate as a hippity-hop was flung across the yard and tore it from my hands, tragically taking that rubber vehicle’s life with its own. The shards of mug sliced through it in a feat of physics I would love to replay in slow motion. A sad day for both me and Madeline. 😦

So, I excitedly arrived at the fair, the very one that brought that perfect predecessor to my home. With walking stick in hand; daughter, sister, nephews and parents near by, I descended. I had it all planned out. I would do a quick jaunt to assess where my new coffee vessel would be adopted and rejoin the family. Of course in spite of separating myself from the group, I couldn’t quite achieve the speed and agility I hoped for, and couldn’t put my finger on the ideal mug. I ran in to the posse just in time for shirt-painting, tie-dying, music-listening, food-wanting, gift-buying, bathroom-going, arm-tugging, constant-whining and thus my chances of finding my soul-mate-mug were diminishing by the second. But my family was on board. They knew how important this was. They each were given a description of said item and an assignment of what to do if they found it. Cell phones are very important in this type of mission. Phone messages with pics of mugs from across the park were employed to avoid excess travel! Anything to shorten my trip was appreciated.

Finally I found one and though it wasn’t perfect, it was close enough. I bought it and took one more trip with Madeline to get her friend’s birthday present, and then a second stop at the bathroom, and finally to meet the rest at the gang at Applegate Farm stand for that much desired-dairy-destiny. (can’t resist hyphenated alliteration!)

Unfortunately my effort to get there was thwarted by the entire physical breakdown of my overly-taxed body. To the outside observer I must have appeared to be a cast member of the Night of the Living Dead; dragging my leg, lunging myself forward to find a momentum. I suppose holding a walking stick and Madeline’s hand helped to dispel that image. But from the inside it was all black eyes and decaying body. I dragged myself to the chair that all ushered me to, and sat.

And when I got home, I sat. Unable to think or even be… stifled under the greatest of exhaustion that compromises my entire self. Sleep and depression weren’t far behind…. a delirious slumber filled with the fear of what I will be when I wake up.

Luckily with Copaxone fatigue is only reached when I push myself far beyond what is reasonable- it is no longer the MS symptom that underscores everything, found after walking 20 feet. Instead it is only found when I expect to be able to do more than my body will allow. Usually that is a lot more than 20 feet, but it falls short of a trip around a festival, a museum or around the park. (and you can forget the Bronx Zoo!) You’d think I’d know that line of demarcation by now… maybe it’s my optimism, maybe denial. Whatever the case may be, I often find myself in this zombie like state disappointed I can’t do something that seems like a “no-brainer”. And thus, I am left with the realization that there is a solution for these scenarios- and it’s that next step that I’ve been avoiding for some time. Can a scooter be as empowering as my walking stick is? I hesitate to type it, but I believe I know the answer.

When I awoke I realized a change of scene would do me good. So I called my neighbor to join her for a coffee. Her kitchen is adorned with mugs that feel great in hand and reinforce this journey with a line drawing and simple message – because in spite of it all Life is Good! That and the great conversation she always supplies is just what the dr. ordered, Thanks Susan! 🙂

Thanks for reading.

ag