Finding Familiarity in Fatigue
For the past few months I’ve been answering questions on multiplesclerosiscentral.com. It’s a excellent place to find information and connect to others with MS who have similar concerns. Serving in this capacity has been enlightening, not only in the satisfaction of using my 21 years experience with the disease to answer questions; but also for the learning opportunity it provides. Recently I wrote to someone who is unsure of her diagnosis, but is experiencing fatigue. After addressing her specifics, I linked her to my blog essay on the subject and in doing so took the opportunity to reread it, as well as the comments.
Out of the 100 essays posted on this blog I think that the responses to this one resonate the most. So, I’m taking a moment to invite more of you to read this post, discussing what is perhaps the most challenging MS symptom to live with and explain to others. The comments on this post invigorate me to continue writing in order to explain to all who want to know what living with Multiple Sclerosis is like, as well as for those who already know what it’s like, but just need reaffirmation. As always- your comments are most valuable to me.
“this” ability
It’s official.
With a June exacerbation my perspective changed. The dizziness intensified and I was unable to move without finding myself in a turbulent ocean. It was as if waves were pushing me in both directions, a sensation that is by no means easy to describe. That, in concert with a number of other challenging symptoms, landed me on 5 days with methylprednisolone- the classic treatment for an MS episode. One that I became all too familiar with since long before disease modifying drugs hit the market. With a synthetic burst of energy, a convenient side effect, I celebrated my 41st birthday and 21st anniversary of my MS diagnosis in one day. And for once, a side-effect was appreciated… allowing me a state of being beyond my normal abilities. I milked it for all it was worth- went out to eat for every meal and enjoyed many moments on this significant day that fell in the middle of this unfortunate episode. And beyond the steroid boost, I thrilled as the numbers grew on my facebook-birthday-fundraiser for MS SoftServe. Matching the frequency of my accelerated heartbeat, each one of my digital re-introduced friends wished me well. A positive reinforcement only known in modern social-networking. And as is the case after any all day party, I was left tuckered-out with a virtual house to clean. Coming off the 5-day intravenous treatment was more challenging than any post-party metaphor could convey. When all of my natural adrenalin rushed to the empty space that the steroids left, my system crashed. For over two weeks I slept and slept and slept. I’ve had many experiences with the steroid shock treatment and none of them ended like this.
When the neurological dust settled, I am left with considerable movement-based-dizziness in addition to the other symptoms I carry like luggage wherever I go. But this was different than the episodes that have preceded it and not only because of the symptoms that are now constant. In this case I realized something that I hadn’t known before.
The post-episode halt left a space for conversation and understanding at new levels. A system reboot- a defrag- reconnecting lost signatures. Apparently every day that I left my house with foot dropped, vestibular disturbed, movement compromised, he feared the worst. This most optimistic man that I married feared that I wouldn’t make it through my work-day without injuring my self. And every night that he was teaching and late commuting- he heard in my voice the exhaustion that prevented me from being the mom I needed to be while he wasn’t yet home. This drive in me to persevere no matter what MS threw my way, was in fact weakening the fortitude that kept my foundation strong. My perseverance was compromising every thing and every one. I don’t even know where to start in this long list of ironies.
So through his eyes, I was able to see that working every single day for 7 hours plus the commute to NYC was not evidence of how much I could endure- how MS didn’t own me. But was instead the ingredients that compromise my ability to function at the level I and my family deserves. I wasn’t spitting in the face of this disease, I was giving it control over the wrong parts of my life… and by taking myself out of the most visible realm of accomplishments “…and I work full time too!” I would be allowing myself the most important one… being at home and awake for my family.
And so, as the papers are finalized and my role with the university completed, I’m finding new abilities in this label. My limited energy is now made available to my magical daughter and my dear husband – this family of three- we all deserve more than what wasn’t left at the end of the day. And with that I’m learning that this ability- is the greatest of all.
I look forward to finding more than I expected with this official disability. Something that could only to be realized when I stood still long enough to see what they had been pointing at all along.
A Genetic Predisposition
Since the time I began to carry a walking stick I’ve gone through some remarkable emotional journeys. What at the beginning compromised my self-image became something entirely different. Before the stick, many had no idea I had MS- or what MS is for that matter. Announcing to my world that I struggle beyond what can be seen at a first glance, gave me the opportunity to educate. It also gave me a chance to represent; showing that some people with MS are walking invisibly among us. What I feared at first became an empowering experience that keeps on giving. And thus is the reality of living with MS. I’m constantly living through symptoms that I never imagined I could handle. So when this experience – using a walking stick for balance and to avoid tripping- and falling- turned out to be so much more than that, I shouldn’t have been surprised.
•••
I’ve always been compared to my mom. When I was growing up no one could tell our voices apart on the phone and the “Oh my god, you look just like Vicki…” was a constant chorus at annual family events. As I got older we heard the comparisons more and more. When we both chose the same short hairstyle, the similarity was uncanny.
My mom has always been a fireball. Not only does she have more energy than the Tasmanian Devil but she also has the inspiration and drive to make most anything happen. Her talents are endless; from cooking, to drawing, painting, clay working, computer designing, everything she touches is stunning. And of course she does not recognize this. (Wait a minute… this reminds me of someone… ) She gives new meaning to the word creative and it explodes all around her. When I was growing up she was a puppeteer and art teacher and thus our world was filled with a creativity that made everything more special. She put little drawings worthy of framing on our lunch bags. Each one, folded and stacked in my 4th grade desk; an archive in the making.
Being a child of such a super-woman made for a hard act to follow. And while this comparison was self-induced- I was intimidated by her natural ability. What I didn’t have in conventional artistic talent, I later found in filmmaking. It then became clear to me that the creative environment I was raised in, laid the foundation for my own expression. And though we don’t share the same energy, “enthusiastic” is an adjective that often falls near my name. We both got a piece of that gene.
When I was diagnosed with MS at 20 years old the internal comparisons came to an end. This label suddenly separated me. I had a new path with uncertain obstacles. From this point on, I could only be me.
In the beginning MS marked me with intense fatigue. And in doing so, my personality was threatened. It’s hard to explain, but I will try…I might be sitting at the table after dinner and where I would normally jump up and assist in the clean-up, I could only sit. Even lifting an arm requires energy when you have that level of fatigue. Even thinking requires energy. My entire presence changed. Truth be known, this is the scariest part of my MS journey. Though I continue to manage my MS in the most positive way possible, I no longer held internal expectations that any child finds in their parent’s shadow.
As the years passed I realized that in some ways MS wasn’t all bad. It requires me to slow down how I live life. This reason for not doing a hundred million things at one time, allows me to see and feel the moments that many miss. And as I have watched my mom’s continued energy and accomplishments I secretly (or not so) hope that she too would chillax a little more.
When the walking stick became a permanent fixture in my every step, I felt odd going places with her. This wasn’t entirely a new feeling. I think as my health became compromised my need of her support increased at a time when I would have been very independent. She is the one carrying the heavy stuff, offering me a seat when there is only one, or dropping me off near a store so I need not walk too far. I felt self conscious when we were in public for all to witness this paradox.
Overtime my connection to her has maintained its significance. When we purchased a house together (with our husbands!) we set up a situation where we could come to each other’s rescue easily and often. And while many of my friend’s parents are retiring, my mom has only expanded her involvement professionally, artistically and personally. So at this point in our lives the paradox of my visibly challenged health is even more striking.
Then everything changed.
My mom’s ticket to a low-key-life like mine, came in the form of a diagnosis. Plantar Fasciitis – a chronic condition that causes dramatic pain in her feet. Although she kept it from me at first… not wanting to complain with all that I have on my plate, it was quickly evident that she was in full coping mode. And this gave me an opportunity to see where my abilities come from. I got a first hand look at the stoic coping that I do, 24/7 exhibited in my mom. For so long my MS has separated me from this comparison, now finally it comes full circle. And wouldn’t you know it? My mom started using a walking stick! Geez… talk about a full length mirror!
When she went on a trip to Great Britain over the summer she purchased some better-for-your-feet funky shoes (in a cool trendy way-as opposed to the old stodgy way) and a walking stick which made her pain more tolerable. She is amazed how much a third connection to the ground takes pressure off the first two. And thus, she learns from me.
I didn’t think too much of it, until we took our first trip together. Venturing out to peruse the Montclair Farmer’s Market. There we were, two women looking oh-so-similar walking with canes. It is hard not to consider how this looks from the outside, although there weren’t many overtly looking. ~So I pause as I consider how much she inspired me all of these years and how much she has given me. I’ve always been aware of the strength with which I cope with MS. While I knew somehow that this perseverance came from my mom, it became strikingly clear when she too made this transition. And now I wonder if she felt more comfortable making this decision because I laid the groundwork, so to say. If my 41 year old daughter can use this, then so can I! I’d like to think that I inspire her, in the way she has always inspired me. I’ll run upstairs and check.. brb!
“The Stony Limits Do Not Hold Love Out…”
Two weeks ago two friends went shopping. They had formed a bond around this happening 20-years ago when they first met. Back when they shopped for treasures on their college budgets in unexpected places. What they found was inconsequential. It only served as goalposts of their time together. This ritual provided a space where they shared conversation, laughter, ideas, each punctuated by the “shzing” of hangers sliding across racks and calls from the next aisle to “checkout” the discovery. Value City and local thrift stores were the inauspicious places they found these looked-over gems or rock bottom remainders that no one had recognized for what they were. Those shopping trips were the comfortable dance to all the best songs they played over and over and over.
The girls are now women; mothers, wives and professionals. They don’t have to reach too far down to find the college girls they once were together. Both have managed to keep that self close by. So when they see each other no matter how much time has passed since the last visit, they find the understanding and love easily accessible, below the skin nuanced by the years they’ve lived since. And as they shopped two weeks ago, they fell into the grooves established decades prior. Though this time it was different. This time they both provided more than memories and a comfort of a shared history. This time they needed each other for physical support as they went through the motions of their historic ritual. While one endures the disease she’s had since they first met, the other faces a new, more challenging diagnosis that shakes the ground they have always felt secure on.
• • •
Finding a way to absorb the reality of Linda’s cancer has left me immobilized… yet flailing. I’m desperately trying to get my arms around all that she is and what she means in my life. As the weeks have passed I have found the place deep inside that only she can touch and I’ve rested there. Within that space has come an outpouring of emotion and words in an unstoppable flow. It’s the soundtrack of our 20-year friendship – a melodic hum that exists beneath everything. And while my feelings are often beyond description, I am taking this time to honor her and what we share. I know it will empower me from now on as I continue to read and reflect on this most remarkable friendship.
So here goes…
I met Linda P. a few months after my MS diagnosis. Tumultuous is not a strong enough term to describe the few years leading up to the Fall of 1988. In short, my parent’s sudden divorce and my mom’s move to Florida led me in desperation to an abusive boyfriend. Escaping that, I moved to Maryland to attend the state university at College Park and after three semesters, I transferred to a different campus in search of a something more meaningful both academically and personally. I was getting used to making these big decisions on my own.
That summer before I started at the new campus began with my 20th birthday and the out-of-nowhere diagnosis of Multiple Sclerosis. It was a shocking blow to my fragile and forced independence. But in spite of my fear, I continued on by myself looking for a community to be a part of while finishing my film degree. Just a few weeks after I moved to the Baltimore suburbs and started at the UMBC film program, I found a group of people who felt good to be around. Just as the cream rises to the surface, so did Linda. It quickly became clear that we had something special. You know how sometimes you meet someone and they match you in ways you didn’t know possible? Well that was how it was with Linda. And as I search for descriptors to convey all that we have, I get lost in the reverie of everyday moments and how it felt back then to have her energy with me all the time.
Trying to describe a friendship in words is not unlike trying to sing a painting. I’m not sure if it was her spirited way of appreciating every moment that drew me in or her adorable personality. At this time, making new friends and meeting new people wasn’t easy. I was unsure and nervous about what MS would mean for me and this seemed transparent in my insecure presence. Many people couldn’t deal with this uncertain reality of mine and were obvious in their apprehension. But Linda never shied away. She clearly accepted every part of who I was in ways I could not yet do for myself. She gave new meaning and comfort to my world.
Hey Copaxone, LJBF*
*Let’s Just Be Friends
This is a hard letter for me to write. We’ve been together for 15 years and it’s been terrific. No, terrific isn’t enough. In fact, no words can define what we’ve had together. You’ve given me so much and asked for so little. It’s hard to imagine what my life would have been had I not met you. I admit, when we were first introduced I was scared. I hadn’t been with anyone else like you before. All the other meds were for individual symptoms and when I had an attack…well you know who I ran to – Steroid. Although that was good for a quick high (and I’ll never forget the dinners we ate together – OMG, beyond words), I was always left damaged. The more I ran back, the more damage was done. I knew I couldn’t keep doing this to myself, but there were no other options. And then BetaSeron came to town. I tried to get a date, but everyone wanted a piece. Ultimately the calendar was filled, and we couldn’t agree on a time to meet. Every day was booked until like, 10 months from my first phone call. Forget that! I’m not waiting around just because they said this new one was the only one that could help me. And those side effects – oof… flu like symptoms? Liver damage? Screw that! I’ll go back to Steroids for that kind of abuse – at least I know what to expect!
But then you came along, all cute with your pre-FDA-approval name, Cop-1. Nobody knew much about you then, but the gossip was good. And I felt special getting to know you before the rest of the world. But don’t get me wrong, it wasn’t all wine and roses at first. You were different than anyone I had known before. On our first date you had a sharpness about you that was scary, even painful. But it didn’t take long for me to get over my phobias and just go with it. And I’ll be honest here Copaxone, you were my first in many ways. We shared some very special times together, ones I will never forget.
Do you remember that time when I walked so far my feet hurt? We’d only been together for a few months, and for the first time in years my feet actually hurt! With you I could walk far enough to feel pain. Oh that is surely when I fell deeply in love with you. And it was just the beginning of what you did for me. I had so much energy because of you. Remember those walk-a-thons we did? We had a team with shirts baring your name- Copaxone Walkers. And that’s not all you did for me. You changed my life. Years after we got together – I had a baby (of course you know that!), got a master’s degree and could even commute to NYC 5 days a week. I had so much energy with you – those subway steps couldn’t slow me down. You were there for me in so many undefinable ways and our relationship was so comfortable. Sometimes I got sick of the daily sticking points, but it was always worth the trade-off. I really shined in ways I couldn’t have without you. And that is why it is so hard to say that our relationship must end. I can’t even believe it…as I type these words. But the time has come to move on to something new. Yes, the salad days are behind us – and I have new needs now. You’ve done all you can for me, and I must start over. You are a tough act to follow Copaxone and I’m crossing my fingers that I’ll get over you. Who knows, I may find healthy distraction in my next affair. But don’t feel badly, I will never forget all we had together.
…
I’m starting Rebif tomorrow and like the end of one relationship and the start of another – I’m afraid, though hopeful. I’ve done some research, but not too much. I’ve asked for shared experiences…and got more than I wanted. The reality is that everyone responds differently to any drug. It may work, it may not. It may cause side-effects, it may not. It may affect your liver, it may not. So as usual in my uncertain future with MS, I forge ahead. I’m hoping, maybe even praying, that this relationship will be the one. The one who will love me for who I am on the inside – scars and all.
So Rebif, if you are listening, go easy on me and maybe we’ll have some good times together. I’ve heard great rumors about you – and I’d like to think we can share the same magic.
Dependence Day
For the past 20 years, the 4th of July has been all about dependence for me. While the nation celebrates its independence in the stifling heat of July, I’m inside. Like so many who live with Multiple Sclerosis– heat is my dictator, my oppressor, my King of England. And while the summer holds many days that are challenging, the irony of summer’s opening holiday leaving me reliant is a wound that never quite heals. I know that whatever the invitation is, chances are good that it won’t be an option for me. So I sit in my air-conditioned room searching for alternatives on this day of independence, working hard to accept the parameters of my dependence on the arm or the stick that supports me through life.
For the past few years I have found the emotional fortitude to watch my daughter in the town parade. Sitting on the chairs set up by my back-door neighbor, I try not to be envious as I look at the ease of movement seen in everyone around me. Distracted by the parade, I wait patiently for Madeline and Keith to pass by as part of the group they are walking with. In spite of the fact that I’m sitting as one of many who have come to watch the parade, I feel useless. I can’t help but to imagine being there with Madeline as Keith has in recent years.
These can’t-do events were easy to avoid when Keith and I were “single” in our marriage. We made plans to fit with in the parameters of our (my) needs as a preference rather than a limitation. Two adults can make these choices and not be questioned. Sitting in a dark movie theater as opposed to the outside activities in July is not unreasonable when desired by two. But all that changed when Madeline came into our lives. What began as fear of how I would care for my infant grew into not playing in the backyard on the hottest days of the summer and not going on the treks through the local reservation to pick raspberries.
As invitations came that were beyond my abilities, I either “wallflowered” or bowed out and allowed Keith to represent. But as Madeline has grown into the precocious almost-8-year-old she is, my absence stings on new levels. Now she assumes I won’t be joining in and for me, that realization is a bitter pill. So now I search for circumstances that defy her assumption while also honoring my reality.
Who would have thought that my first effort would be on the 4th of July. The day that repeatedly blacklisted me from engagement. Maybe it was an affirmation from the powers that be that it only reached 79 degrees this year on that day or that the delivery came just in time to seal my participation. Arriving on July 3rd at 5pm fully charged and ready to escort me in Montclair’s Independence Day parade- I had no way out. I told myself, that if it came prior to the 4th, I would do it. I made a public verbal commitment, knowing I would not have the option to find excuses. I sometimes have to trap myself that way… my rational brain forcing my emotional brain out into the fray, like a kindergarten-er on her first day of school. By parading myself past the entire town while struggling to accept this variation of me, I am forced to do exactly that. I will be playing the role of someone who is at ease, in spite of the real character behind the continuous smiles and waves of a parade. It’s all or nothing… that’s how I roll – so to say 
.
***
Despite my efforts to evade this inconvenient truth, I finally forced myself through the red-tape that helped me to avoid this acquisition for years. Forging ahead in spite of an intense internal resistance… I am now allowing myself to use that which I can barely utter for the scenarios that were beyond my reach, my step. Showing my daughter that I can be there representing with a cool ride and a big smile. Pretending its okay…even before it is… I know I’ll get there. And while my forced physical presence could only happen by making and losing/winning bets with myself, I will continue to find ways to accept the me who needs a device for mobility… to be a participant and not a sideliner. And Madeline will get the message, without even knowing it.
Representing!
The Language of Motion ~
Most people move without thinking much about it. The turn of the head, the lifting of a foot, crossing a room to get the newspaper- each done with the ease and brilliance of all the body’s systems working in concert to achieve a simple goal. So when that which is involuntary becomes impossible – it affects more than the nerves and muscles that are working hard to regain their normal role. It is more than that which can be scanned or examined. And while explorations of the mind will get you closer- it remains untouchable. In fact many of the nuances are unclear to the person who houses the defective control system that is known as MS.
So when the dizziness I’ve been living with since December 2007 began to increase, I didn’t think too much of it. Every day brings about a different experience of how I interpret and move in the world since that winter episode a year and a half ago. While I may wake up dizzy-free, the sensation is usually found not long after by moving in ways that are subtle and hard to predict. It has become the most visible challenge of my 21-year MS ride. One that forced me out of the closet with a walking stick- in to the role of an MS educator of all those who didn’t otherwise know. And while I have found surprising comfort in that new character – I’m constantly reinventing the part, rewriting my lines and finding my place in a play that is different every day. And in this re-staging, I consider motion.
The language of motion changes in me at every moment, in what is spoken out loud in my movements, or silently in the evolution of my awareness. It is a constant monologue. I have limits in how I move in the room that are exaggerated when I step out my front door. But the script of my inner workings know no bounds. So while at most times I can’t remember the lines required to make a simple gesture easily performed by the entire audience, I soar on the inside and thrive in my limitless awareness and understanding.
As I take my fifth steroid IV treatment, for an attack that crossed my 41st birthday/ 21st anniversary with MS, I wonder how fluent I will be, and how much my dialect has changed. With these high doses coursing through my veins, I find synthetic energy that is both wonderful and frightening. I’m no longer searching for the words and expressions to make simple movements across the room. And while the dizziness remains, I search for an interpretation that will allow me to get back to where I was before this episode. Though I know I must also consider more challenging thoughts. I may need to start with a blank script and a different role in this new production.
Voluntary Scars
It’s probably not a stretch to say that when most are diagnosed with MS their greatest fear is not being able to walk. This was certainly true for me. At that time I was a twenty-year-old film student. I edited in my mind all the most dramatic scenes of what my future held. It was a veritable clip-reel that I played when I was uncertain. I was not empowered then, I did not yet know what I was capable of living with or how I would cope. I crumbled at my coming attractions with the familiar baritone voice-over that started with “In a world…” and ended in total desperation. As the years went by, I would direct a more effective promo to provide support and backbone as opposed to a punch in the stomach. And though I have a more practiced place to go to when these moments recur with my wavering abilities, that original clip-reel still plays silently in my mind’s dark theater.
Now as I’m working through the logistics of getting an electric scooter, I am struggling with the pain of a compromised identity. Seeing myself in a chair of any kind brings out this internal film for its much-awaited premier. And even though I’m only planning to use this scooter to be more involved in life, I can’t ignore the sold-out theater of Amys nodding their heads and smirking at the predictable ending.
So, I need to counter with an indelible marker. Taking back the piece of my identity that was sucked-up by fears that have lived in me since June 21st 1988. Taking back what’s mine from the walking stick or the scooter that make me seem definable. A voluntary scar to counter the multiple scars that my immune system is inflicting on my brain, my spine and my sense of self. MS may claim parts of my identity through the symptoms that compromise and limit me, but I strike back with who I am on the inside- in addition to the neurons, the myelin and the misguided immune system. In doing so, I too have the power- to declare what defines me beyond the first glance. A tattoo was just what I needed.
When I met my now husband he already had three tattoos. I insisted that had he met me first, he wouldn’t have gotten them. It was against everything I believed in. Being someone who is constantly evolving, it didn’t make sense to me. How can one commit to an image that will represent them for their entire life? It denies growth and change- something I feel like I do weekly. As with everything- I am, shall we say, expressive. I didn’t hide my feelings on the matter. So, when this very verbalized opinion did a complete 180, it was fully in Keith’s rite to require me to eat so much crow that I could no longer call myself a vegetarian. But lucky for me, he’s not that kind of man.
After I gave birth to my daughter I was forever changed in ways I could not have imagined. And when the twin towers fell 16 days later I longed for something completely permanent. When my dear friend Linda was considering a tattoo, I jumped at this additional symbolic opportunity in getting one that matches hers and I’ve never regretted it.
Not long after that, I designed another tattoo. This would turn out to be the voluntary scar I needed to empower me. It represented more directly my permanent love for Keith and Madeline, not only in its constant presence on my body, but also in its design – an infinity sign with our initials. While I hoped Keith might be inspired himself, he was emphatic (in his subtle way) that he was not interested in getting another tattoo. (No symbolism there!) And though I had originally designed a matching one for Linda and her loves, she is no longer in the market either. I would have to go this alone. And in that, it presented a much greater symbol, one that is all about me and my need and fear of permanence. That it happens to be very cool doesn’t hurt- beyond the initial needles (another thing I’m not a stranger to!).
So I’m feeling a reinforcement in this tattoo. It reminds me that I’m permanently me- no matter how I appear to the rest of the world, or to my theater-going self from 21 years ago. And though most can’t see it, on the small of my back- I know it’s there- and anyone who cares to take a closer look may also notice it… and see the person behind the scars- voluntary and involuntary.
Thanks for reading.
ag
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
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
