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?)

a song filled in~

On the phone I sang to her in what would be her last hours; the song we used to harmonize in college. Her voice was a faint whisper, but I could feel her presence. At some point I forgot the words and launched into a series of melodic “something-somethings” while laughing and crying. She tried to speak. Her voice was too soft for me to hear… so I told her to just listen.  I didn’t want her to struggle.

When I got on the plane the next morning, I got word. I disembarked and sat out side in the cold air, waiting to be picked-up to return home. I could have waited the 40 minutes inside, but feeling the discomfort and clarity of the cold kept me out there at departures. Or maybe it was just feeling something that kept me. Sitting tenuously on my suitcase, the numbness filled my visible breath. And I replayed the song hearing her harmony next to my melody. Filling in what was missing.

John told me later in the day that she was smiling ear to ear through our brief conversation and though he didn’t know what I was singing to her, he could tell that she was filling in my forgotten words.

I’m not sure I will ever recognize myself in this world; this place where Linda doesn’t breathe the air. I’ve never lost like this. Maybe someday I will find a way to use these memories to fill in the hole in my heart. Maybe not. Either way, I will seek comfort in the devoted song- that will always find harmony in my mind.

advocating from within

advocate [v. ad-vuh-keyt; n. ad-vuh-kit, -keyt] verb, -cat⋅ed, -cat⋅ing, noun- a person who speaks or writes in support or defense of a person, cause, etc.

Living with a chronic illness can be challenging on so many levels. In addition to being physically and emotionally compromised, we have to step outside of it all and advocate on our own behalf.  Depending on the symptoms of the day and the emotional state that goes with them, it is often impossible to make the right decisions. Especially when we can’t always see clearly what is happening. And while many of us have family members who advocate for us, they too are experiencing the emotions of our coping and may not have a clear perspective of what needs attention. I’ve always said that in a perfect world we would all be assigned a “primary care advocate.” A person would guide us through our needs and provide solutions in a way that only someone not in the midst of the coping can do.

Last week I visited with my dear friend Linda who is fighting cancer and saw first hand the importance of having an advocate. We spent good time together, recounting special moments and creating new ones. I had no specific agenda for the trip. It was great to be with her and offer more than virtual love. I held her hand, kissed her face and listened to the messages that can’t be sent via the phone or computer.  I hoped to make her laugh and she me as if there was nothing but the two of us in the room.  For this to happen we would need to find moments for her to be pain free. Linda goes from serious pain to happy and adorable in the flick of a switch. It’s incredible to watch. Of course the same happens in the reverse when that antagonist re-enters the room.  This battle is constant. There was never a long enough window of time for her to think clearly. With no opportunity to look at the big picture, how could she represent?

I spent this first day attentive. Watching her press the button to send an extra surge of meds to relieve the increase in pain. All the while working hard to stay awake, get rest, care for her little one and eat. The latter of which is the hardest. She desperately needs to put on weight, but eating is very painful.  I kept reminding her to hit the button at the slightest discomfort and as a boost before and after meals. It’s amazing how hard it was for both of us to remember. Her expression was the prompt, but we looked for an earlier cue to preempt the pain. It was already clear to me, how my being there was helping beyond the distraction of good company. But it wouldn’t be until the next day that I could really see the role I filled so easily.

Monday morning I joined Linda for her Dr.’s appointment. We were quite the pair. She – walking gingerly with her pain pouch in a bag over her shoulder, tube running in. Me- with my walking stick, deliberate in my navigation while holding her arm. Moving around the hospital, it was unclear who was supporting whom. Of course the reality is we were both giving and receiving in complementary ways. Like the last piece in a puzzle that didn’t look like it would fit, but once in place completed the picture perfectly.

When we made it to her meeting with her nurse practitioner, Linda reported on her experience since her last visit including her pain level and how often she needed to hit the button.  I was surprised that her report didn’t match what I had witnessed the day before. She is a stoic, strong woman. I’ve watched her endure a lot more than most could handle. At first I hesitated to interrupt, but as the exam continued I knew I had to say something. When I did, her nurse suggested that they increase the pain meds and as Linda resisted, I saw myself.

I know the feeling of not wanting to increase my drugs for fear of the long-term implications. The thought of being reliant on medication- pills or liquid being pumped into your veins for the long haul is not an easy concept to digest. In Linda it looked more like a fear of submission or failure. So I questioned her nurse to say what I hoped Linda needed to hear. They were the words that soothed me when I had a similar struggle. “What dosage are other patients using?” As her nurse counted into double digits, I saw Linda’s face calm a bit.  It helps to have perspective. I was her advocate, moving in to that role with ease. A role that I could never be for myself.

During my most recent MS attack, my husband and I were discussing some “what now” options. During that conversation he told me things that he never had before. Apparently he had been living with a great deal of stress in his concern for me. I was commuting to NYC, working a full day at NYU and coming home too exhausted to function in a meaningful way. My worn-out self did not the best mommy make. He never mentioned his concerns before because he didn’t want to take the wind out of my sails. And my tendency to persevere in spite of it all prevented me from seeing the reality playing out in front of me. I’m glad Keith was there to show me what I needed to know. Looking back I realized that this wasn’t the first time I needed someone else to point out what couldn’t be clear in my mind.

It took way too many times kissing the NYC streets for me to recognize that a walking stick would help me to navigate my world more safely. The foot-drop combined with a shot of dizziness is the perfect cocktail for scraped knees and a humiliated ego. But I always assumed that if I needed a stick, my Dr. would tell me. This was my frequent retort to my mom’s gentle (yet sledgehammer-like) inquiries.  A walking stick felt like a progressive failure to me. As I waited for my doctor’s recommendation- I endured more falls in denial. When Keith suggested considering it, I couldn’t ignore the evidence anymore. I knew intellectually the benefit it would provide, but I feared how it would speak to me, about myself. I didn’t know who I would be with a walking stick and I was not interested in meeting that person. Keith helped me move past it. He suggested that I treat using the stick as a social experiment. (Just How Nice are Those New Yorkers?!) And that concept empowered me to go forth.

The irony of this whole scenario is that when I went to my doctor’s office shortly after this decision, he questioned why I was using the cane. He said based on my exam there is no evidence of need. I couldn’t believe something that took so much emotional fortitude to accept was being questioned by my doctor -who, btw is a premiere MS neurologist worldwide. Nothing showed up in my exam to indicate this need. Of course he couldn’t recreate walking 3 blocks, become fatigued and dizzy and have my foot-drop kick in. I guess more detailed questioning would have unearthed this evidence.  But as they say, the doctor treats the disease and the nurse treats the person. After that appointment, I witnessed again, what I already knew.

With 21 years of MS under my belt, I like to think I’m an effective advocate for myself.  In many cases I am. Though my mind must play a fragile balancing act. And as I struggle to navigate past the information that fuels my fears of  “what if” I know I’m running the risk of missing something that could be very helpful. With Linda I felt inexplicable strength based my own experience in the doctor’s office. Knowing what my needs are, I easily stepped into the role of advocate for her. And in her, I saw myself. I was that patient – from the outside looking in and I knew exactly what to do.

“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 was 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 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 that all three of us deserve. 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 could concentrate on 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. 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.

//

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.

Amy and Madeline Representing!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.