Surfacing~

I’ve been trying to come up with the words to describe this for months; though come to think of it, it’s probably more like a year. This inexplicable thing has been bouncing around my head, periodically coming together to make a sentence and then falling back into individual words that I can’t remember or feelings I can’t explain. It seems fitting to have this figured out before the year’s end. (Which happens to be moments away.)

So here goes:

For me, living with MS is a fluid experience. My changing abilities wash over me like the tide and leave me disoriented. My body defines and redefines itself with the ebb and flow of my disease and my emotional response is a balance of denial and strength. The current pulls me around as I’m dodging fears and rising to the challenges to keep moving forward. I search for solid ground to find perspective. But until I get there, I forget what normal is.

Each day rolls into the next with changes that are often very subtle. And after more than two decades with MS, I have learned to accept what is for the day, the week, the month. I don’t spend a lot of time examining the specifics of how I feel. I just cope. And part of that coping is to avoid looking at the big picture. While “I’m soaking in it,” I can’t see what may be obvious to others.

See how confusing this is? I feel like I’m contradicting myself! Ok, let’s back up a bit.

My symptoms fall into two categories. There are those that I’ve dealt with on a daily basis, since I was diagnosed. Many of them are manageable with my prescriptive cocktail, others I have learned to live with.  For the sake of the metaphor, let’s call those symptoms Barnacles. The second category consists of the symptoms that come and go and come and go. Let’s call those Shells. Oh wait, did I say two? There are actually three categories. The third is the attacks. (Okay, I could go all shark metaphor here, but won’t over-do it!) The sudden onset smacks me with an unexpected wave and leaves no question about what is or isn’t usual. And while I am afraid that some of these new symptoms may go barnacle, I rarely lose sight of who I am outside of the relapse.

So, here are some examples of the parasitic barnacles I live with. Including, but not limited to: foot drop, difficulty walking, dizziness, poor balance and hmmm, what are those other ones… oh yeah, incontinence and an inability to pee. How could I forget them!?! These tenacious little buggers have been clinging to me for so long that I can’t remember a time when they weren’t a part of my everyday.

So you ask, how does this fit in to the inexplicable-thing category? It’s those elusive shells. They roll in and roll out and as I chase them up and down the beach, the water overtakes me and my defensive denial kicks in. Leaving me even more dizzy than usual. When I finally resurface, I can’t tell where I am.

I’m getting lost in metaphor. Maybe a real example will better convey what I’m trying desperately to say.

This year I noticed that I couldn’t stand for very long. The amount of time required to load the dishwasher or heat up a microwave feast eluded me. And because it came on so gradually, I barely noticed it happening. As the months went by, my standing time continued to decrease and all of a sudden I stopped and scratched my head. Have I always been this way?

From the outside this must seem ridiculous. How could I not know that this debilitating symptom is out of the ordinary? As I speculate further, I find myself standing in moving water. The next thing I know I’m submerged in a tide that was at my ankles a few moments earlier. And as the water touches my chin, I tread, trying to figure out who and where I am.

It’s usually my husband who reels me in. He helps me find perspective without lingering on the thoughts that are counter-productive in my coping. Realizing that this symptom isn’t a barnacle, set off internal fireworks over the Hudson.*

So the year is at its end. The next one is imminent and as is the case for all of us, I have no way of predicting how the tides will turn. Maybe now that I have the words all together in one place, I will be less likely to go adrift again. Though I must say, denial, when used reasonably, can be a very comfortable flotation device.

*Oh, and btw, “my long-standing-ability” has greatly improved or “How I learned to stop worrying and love the Ampyra.” Does anyone get that reference?)

Hear the voice behind the words~

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

Stick Semantics

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

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

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

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

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

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

“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.

//

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

There’s Got to Be a Better Way

A few years ago Madeline, Keith and I enjoyed watching Little Bill together. It is a gem of a show created by Bill Cosby that is very entertaining, creative and educational. All the things you would expect when touched with Cosby’s genius. Keith and I revel in those shows from an Instructional Design perspective and we love to be involved in that process with Madeline, using it as a tool to teach her how it applies to her life. She is always an eager student. In one episode Little Bill was trying to figure out how to accomplish a goal (the details escape me) and he kept repeating “there’s got to be a better way” as his mind moved through the creative process of trying to determine how to make it work. That stuck with me and I use it for Madeline, as well as for myself.

Living with MS requires me to be creative. I need to incorporate new symptoms in to my life regularly, while maintaing the pile that already exist. Sometimes that maintenance is streamlined, but often there is a log jam when something is more difficult. It requires a pause and reboot.

So here I am, announcing a pause and reboot.

I’m trying to get back to my yoga routine that ended in December of 2007 when dizziness came to challenge me.  I’ve tried to reincorporate it in different ways in this past year and a half always gravitating to abdominal tightening, I found myself drawn to the very thing that makes me most dizzy in my effort to remain trim. (Why am I soft in the middle when the rest of my life is so hard?) :)  Reboot.

This is not about physique. I’ve always struggled with the fact that I can’t work out the way I want to; to be as trim as I prefer. Society’s pressure doesn’t passover me just because I have MS marked on my doorpost. (little pesach humor there!)  But that isn’t what Yoga is for. It runs much deeper than that.  

So last Tuesday I went to my first Yoga class. The MS Society was sponsoring this MS Yoga class for free at a church down the block from me. I couldn’t find any excuses for not attending… it was convenient on every level. So, I went. Somewhat fearful of what I was going to be exposed to, in terms of the MS variability, but forging ahead knowing that this was really an old emotion, and 20 years into this I can handle it.  My ego was no longer that fragile, and I need to update my files. 

And I moved through the expertly guided positions (many of which were familiar to me from my home video) slowly and deliberately. The woman who was leading this session Diane Speer, clearly had experience working with people living with MS. Her expertise was immediately evident.  She started us all in an easy place… and we each worked our way though it.  But in spite of my careful effort, I knew when I stood up that I hadn’t been successful.

And here I sit, 4 days later- dizzy when I move my head, clutching my stick, staying home from work and using my energy in stillness. Luckily the stillness works for me and I feel ok when I’m at the computer.   So, while some would give up on this yoga thing, I won’t, because I know there has got to be a better way. And Diane is going to help me crack this. (thank you Diane!)  We’re going to craft a routine that provides the right movement, both inside and out– neurologically, muscularly and emotionally. Until then, I’ll just sit still.

and I’ll keep you posted.

Pixel Bound

This has been an unusual couple of weeks. I have felt the need to blog so many times, and have been unable to get here. Some days I find myself crafting the opening phrases and titles of entries that never find their way to the pixel.  I’m starting to recognize them as a neurological archive of drafts. Will I ever get back to them or will they languish in word purgatory? I wonder. It also gets me thinking about my creative process. I’ve been learning a lot about how I create,  edit, and ponder my life experience. It has been quite profound. The power of my own words has surprised me as I use them to console, inspire, and comfort me.  I hadn’t realized when I began this blog in 2007 not only how healing it would be, but also its potential as  a creative vault that when opened has great impact on my today.  It amazes me in different ways continuously.

Yesterday I made a bad decision. Although I was hesitant to admit it, I have been relatively dizzy-free for 3 weeks. It happened gradually, with small set backs caused by certain movements. This past week however, I’ve been able to move in ways that had been previously off limits.  Most notably, I could look up without being left in an unstable place. I have even been increasingly comfortable telling people of these improvements,though it has taken me 15 days to feel truly confident about doing so.

I have to admit too, that I began to slide off the “MS Recovery” style diet a few months ago. While it continues to inform my eating decisions, the rigid requirements of doing without certain things – is no longer in play.  I quickly recognized that this wasn’t having  impact on my dizziness and though I know the change of eating is a long term investment for MS…  and overall health improvement.. however, the thing that kept me on it was the hope that it would impact my dizziness. Somehow when that didn’t pay off after 5 months I gave in to temptation.

This is disappointing to me on some levels. I like how I feel when I’m eating by those rules. I have less temptations and compulsions toward feel good food. (like chocolate!) But along with those compulsions comes food that feels happy… and while I know that in itself isn’t the best way to eat… I missed it.

Okay… back to my egregious error. I was very excited yesterday to actually do a load of laundry… take it out of the dryer.. immediate fold it and hang it up so it doesn’t all sit in a wrinkly mess only to be dried again… and again.  It’s those little things.  Anyway… I was unloading.. and folding and hanging on a rod in the basement over my head. With some repeats of this motion I found that I was feeling nausea. But… I pushed ahead figuring I would be done shortly. Nearing the end, I was able to hang the clothing up without actually looking up to make sure the hanger was properly placed. Ah those little skills we accumulate!  Unfortunately, as I completed the task I realized I went a bit too far.

And that dizziness still lingers 24 hours later. That is just wrong! I was just folding some laundry! If my husband didn’t already do 80% of the tasks our life requires, I would pass this off to him. But the reality is I get pleasure from the tasks that are small and satisfying. Ones that don’t require edits and rebooting, and analysis. Very succinct, a start middle end. Even unloading the dishwasher brings a certain amount of satisfaction in my day… balancing the complicated tasks with the quick and should be easy ones.   The good news is that I am fully capable of sitting at my computer, writing in my blog and submitting grant applications on behalf of MS SoftServe.

Last week I met a faculty member at NYU who has had MS for 35 years. He has his challenges, as we all do.. but he offered some words that help him carry on…  “At least I wasn’t born in Sarijevo”.  I guess that speaks to me as I try to keep everything in perspective.

At least I was born at a time that traverses the digital age.

So much to chew on there.

~ag

Behind the Scenes

For the last week or so I have been home with plenty of time to write in my blog. So why haven’t I done so… There is something about my experience with dizziness that has made it difficult to be productive in spite of the fact that I’m not dizzy when I sit at the computer. The emotional response to anything that MS puts on my plate is multi-layered. Nothing made it clearer to me than reading My Stroke of Insight by Dr. Jill Bolte Taylor. The text is having a tremendous impact on my day to day experience with my compromised brain.. and I’m writing about that now- behind the scenes.

Look for that post soon.

Thanks for not writing “check in on this blog” off your to do list~

ag

Something has changed

It is such an unusual experience having compromised sensory symptoms. The information and tools we use to interpret the world around us are generally consistent. We know when something hurts, or feels uncomfortable. We can even explain the details of pain or discomfort with metaphors and similes. My head is pounding like a jackhammer. Even the sensory changes have common comparisons. My feet have pins and needles from sitting wrong.

I can describe my dizziness with a number system, or scenarios that people can relate to. I feel like I just stopped spinning around and around in a million circles. I’ve refined and re-tuned my descriptors as I search for a way to have a handle on this ambiguous yet debilitating symptom.

Then last night something changed. In the evening after a long day at work, I started rearranging things in the kitchen. I was suddenly overcome by a surge of energy- as was immediately evident in my housekeeping. (something I usually don’t have much drive for.) I made steamed kale with shallots and tamari and some quinoa. I unloaded the dishwasher and loaded it with the sink’s contents, I washed all of the pots that had been socializing on the stove top for the past few days, I did 3 loads of laundry including the folding and putting away. I scooped the litter and swept the floor and read 3 chapters in my book. Now this may seem like a standard evening for many working parents… but for me this was a superhero moment. I hadn’t been that productive in this short evening time-slot in a long time.

What was that all about? I’ve been detoxing for 1.5 weeks and am re-cooping from the acupuncturist with visits to my chiropractor to even things out. Maybe this has something to do with it, maybe not. All I know is that although I continue to experience dizziness — something is different. Something is really good.

Acupuncture, a different type of needle.

Last week I went to see an acupuncturist. I had never done so, and after almost 20 years with this disease it is surprising to me that it is the case. I’m open minded, yet always felt that I would exhaust conventional medicine before going the alternative route.  As I explore the MS Recovery detox, seeing an acupuncturist seemed like a good complementary effort. As I’ve said, anything that might stabilize my world is worth a shot, or a needle!

It was quite an experience. I learned first hand, or shall I say first back, what cupping and scraping means.  If you have ever seen these ancient Chinese techniques exploited in films (Harriet the Spy) you know what I’m talking about. You know the one where glass bowls and needles are stuck all over the character’s back? Well that was me… although a bit less exploitative.

After all was said and done I had a modern art of hematoma on my back that makes Jackson Pollock look hesitant. But the truth is I felt great. Not sure about the dizziness… but great none-the-less on every other level. Apparently I have heat, and dampness and phlem as was evident in my 9 pulses. I went home with some suggested additions to my detox diet, as well as a daily vegetable juice to combat this condition. Oh, and dandelion root tea. I can embrace most of the suggestions and the juice recipe is very good. 

So I went home very optimistic that I would experience a change. As the evening wore on I was sensing something different, although I couldn’t put my finger on it. Unfortunately when I woke up the next morning everything was worse. Such that I didn’t go to work for 2 days and still felt worse over a week later. I’ve been hopeful that this much change would give way to similar recovery. (That’s the kind of optimist I am! ) When I visited with Dr. Verter, his thoughts were that she just did too much at once. (cupping, scraping, deep tissue and acupuncture) After two sessions with him.. I think I may be on a mend of sorts.  

At this point I’m just thankful that when I am seated I’m fine. It allows me to write and work and feel productive. If I didn’t have a break there… it would be in a much harder to cope. So, I will try to accept what is- and continue on with my efforts to be in the best health in the areas I actually have a say in. (ie. food and exercise)