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!
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.
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.
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.
Deciding to have a baby when you are living with MS can be a tough decision. Or not. If you’re like me, you know you want a baby under any circumstance. Whatever the case may be, I hope that by sharing my story, I can provide what I longed for when my husband and I were making our plans; that being a positive experience to support the decision we had already made. While everyone has a completely unique and unpredictable MS path and all-of-the-above is true for how any pregnancy might play-out, each telling offers an inside-line of possibilities. Here’s mine.
Everything about planning to have a first baby is filled with question marks even without MS. How long will it take to conceive? (How to take the reckless bliss out of marital recreation) What will being pregnant be like? (Puking, constantly pee-ing, and walking like Frankenstein’s monster….) Will it be a smooth delivery? (How the HECK are they gonna get that baby out of me!) and How will it change our lives? (Will we ever have reckless bliss again?) When MS is part of the equation, the question marks are bigger, bolder and have potentially long term implications. What about all of the meds that make my life livable everyday? If I don’t have bladder control now….? Will my MS be worse after I have the baby? Will I be able to care for a new born? a toddler? a teenager…? Okay, wait a minute, no one should be thinking about a teenager when considering to have a baby…. although it may have a significant impact on rising populations! ☺
The year was 2000, and there were a few things I had decided already about how my pregnancy would go – I would stop my Copaxone while trying to conceive- although the prospect scared the *!#@ out of me. At that point I had been on it for 7 years and it was doing remarkable things to improve my everyday with MS. There wasn’t much that was known about the effects of the drug on pregnancy and I wasn’t taking any risks. Adding to my comfort in this decision was that once I got pregnant I would likely feel much better than I do normally. It is known that the immune system is naturally suppressed during pregnancy to allow for a foreign entity (ie. the baby) to coexist inside you. And so, the said immune system no longer randomly attacks the precious myelin that keeps our neurons functioning healthy! (note to self: if true, explore surrogate motherhood as vocation!)
I was afraid of what my MS would look like without Copaxone or the benefits of a pregnancy-based suppressed immune system. So it was the “in-between time” that had me worried. With the over-speculation and hyper-assessing I take to anything; I read, and wrote and thought. And talked. And talked. And talked. For me, rehashing and reconsidering any and all possibilities gave me a sense of control over any situation. Silly mortal!
So I stopped the Copaxone, (My neuro told me it would take no more than a week for it to be totally out of my system) and immediately starting working the ovulation predictors. (Say goodbye to spontaneity) I wasn’t going to waste a moment. I knew that the quicker I got pregnant the better. It’s a crazy game trying to enjoy the process (if you will) with so much riding on it! (if you will!) Luckily it only took us three months to conceive and my health didn’t falter. Check.
What came afterward was all good. I had a wonderful time being pregnant. Okay, maybe that’s slightly sugar-coated. But the truth is as they predicted my immune system took a break. And all my cells came together in their pregnant bliss and rejoiced! My energy was up and I could walk farther than ever. Of course I dealt with the normal joys of pregnancy: nausea, headaches, heartburn and the inevitable transition in to the incredibly enlarging woman. But all paled in comparison to the normal MS symptoms that I had become so accustomed to. What really tickled me at the time was that I was treated in such a way that would be very helpful in my every day life with MS. I was offered a seat wherever I went and always made aware of the closest bathroom. We went to see Chicago on Broadway and I was escorted to a super-secret bathroom in the mezzanine. Wow! I immediately began to consider ways I could develop a prosthetic pregnancy suit for just those scenarios in the future. Think of the possibilities!
When the big day came I delivered Madeline after 6 hours of labor, 2 of which were “hard” then ultimately cushioned with the once-removed feeling of an epidural. (Someone is having a baby here… though I’m not clear on who! ☺)
Then we got home and wasn’t so easy. Recovering from delivery and having to learn how to do EVERYTHING is challenging for everyone. The breast-feeding, the diapering, the clothing, the bathing, the burping, the sleeping or rather the not sleeping, all created a veritable tornado of learning and uncertainty. Luckily it was cemented together with the unbelievable love you can only know in your baby. Keith and I spent all day and night in that first week marveling at our perfect little person. Nothing could have prepared us for that emotional magnitude. This couldn’t possibly be what everyone else is doing!
And while I was coping with post-partum depression and fear I would not be able to physically do everything a new baby required, we found the support we needed and tried to be patient that the rest would come.
16 days later was 9/11.
Whatever feeling of parental mastery we had gained shriveled in our fear of the world we brought sweet Madeline into.
• • •
When all is said and done my greatest hurdle was emotional. I never had the MS relapse that was often sited in the “literature”. And though I had challenges that were uniquely MS, none were above and beyond my ability to cope at that time. The depression that began after Madeline was born, merged with the anxiety that we all felt after that September day. And though my pharmaceutical cocktail continues to include ingredients that address these issues, I can’t help to wonder what that graph would have looked like had those two events been further on the timeline.
When I began this entry, I thought it would be an opportunity to share my experience with pregnancy and childbirth from an MS perspective. What I hadn’t realized was that irrevocably intertwined in my (and Keith’s) most precious life experience is the residual impact of that tragic day. It’s impossible to think of one without the other and so much sadness and resentment surrounds that pairing.
If anyone reading has questions about having a baby with MS — please feel free to contact me and ask the details that didn’t make it into this final version. Right now, I’m carried away in the other place this writing took me, trying to weed out the memories I want to magnify and lose those I long to forget.
Time is an abstract concept on so many levels; while precious it is so often wasted in my life. How does that happen? I read in the Science Times this past week that the brain uses times of boredom to file information.
Some experts say that people tune things out for good reasons, and that over time boredom becomes a tool for sorting information — an increasingly sensitive spam filter. In various fields including neuroscience and education, research suggests that falling into a numbed trance allows the brain to recast the outside world in ways that can be productive and creative at least as often as they are disruptive.
Maybe that explains why as I was completing my Master’s degree I had a compulsive need to search craigslist for a dining room table. Or when I need to create a budget for my non-profit I fritter time away playing word-challenge on facebook. But does that count as boredom? Isn’t that just a welcome distraction from what must be done? I’d like to think that my brain is doing something productive during those interludes of mindless fun.
I wonder how that factors in to most people’s existence. I’ve just spent the last hour or so at a local farmers market getting spelt bread, tasty white corn and new pickles. The leisurely walking so often reserved for museums or garage sales kills me. I come home too exhausted to make the juice I planned or lunch for the three of us. So how does my scar riddled brain factor in to my need for slightly stimulated down time?
Maybe I shouldn’t question so much and just let it be. After my budget is complete and my letters of outreach are written… and I do 3 (5 at the most) rounds of word challenge . I gotta get my score up!
So here it is. Saturday, June 21st of 2008 I’m celebrating my 40th birthday and the 20th anniversary of my diagnosis. Being diagnosed with Multiple Sclerosis on your 20th birthday might seem like a cruel joke to some, but for me it was the beginning of my life challenge. What seemed to be an insurmountable prognosis became a series of tests that I passed with flying colors.
Don’t get me wrong… It would be an understatement to note that a lot of this ride has been very difficult. I’ve certainly spent time crying, shaking and cursing the universe that assigned me this lot in life. Wondering in fear what is next and how will it change my everyday. The “what ifs” and “will I be able to handle it ” question marks clogged my already crowded neurons. That ride started out like a rollercoaster with no end in sight. The loch ness monster at bush gardens in virginia is the best parallel. I was too scared to go on it as a 10 year old but I’ve been riding it every since my 20th birthday. This time I was taller than the hand on that little animal painting and had no excuses for not joining the group of apprehensive riders.
Apparently the same universe that I cursed, thought I could handle it… even 20 years ago at this very low period in my life. Apparently it (the universe) was correct. “That which does not kill you makes you stronger” is an apt theme for what turned out to be a scary course with MS. The people I meet who have had this diagnosis for more than a couple of years mirror that posture. It’s the once unwilling boxer now shouting “Is that all you’ve got?” “Bring it on!” I’ll show you what I can handle. It may have taken me years to find this fighter in me… but its with me now. When I think I won’t be able to cope with the symptom de jour… I look back at what I rose to the challenge of, and feel emboldened. (I think I may have left out 1 metaphor…should I go on?! 🙂 )
In 1988 I was just starting out on my life, independently from my family. New to Baltimore I sought out friendships, dated and learned who I am as a filmmaker in a pre-digital, pre-internet world. I also needed to learn who I was (am, will be) as a person with Multiple Sclerosis. Yet I didn’t yet know who I was without MS. The spectrum of “what might be” seemed vast at 20 years old. I feared everything. Would I be able to complete my degree? Would I ever meet anyone who could love me with this disease? At a time when I was unsure of who I am in this world, I had to cope with unsureness of my being at the most pure level.
Discovering myself as a person with an organic disease that is completely unique is very tricky. When I reflect back on that time I wonder how I got through it. Because I was simultaneously coping with my parent’s divorce and my mom moving to Florida, I was alone in the process. But like many things in life, time is the great adjuster.
Time heals all wounds… except of course if they are scars. In retrospect the wounds of coping made me a stronger individual. I feel that who I am today has been shaped by my ability to cope with unexpected changes. As I leaf through the pages of the history that is mine with MS, I continually make that positive Hmm sound. You know the one.. with the little lift on the the last “m”. Almost questioning. As the years progress and I continued to reflect I realized that I can deal with far more than I ever imagined I could. The initial fears that came up while reading the list of possibilities in 1988 played themselves out very differently.
But the THE UNKNOWN loomed large over my college graduation. As I sit here 20 years later, a mother, a wife and a person who owns this version of MS – the next 20 years still hold a lot of question marks. But looking back and looking forward I can say that whatever is in store for me, I can handle. The list of possibilities that fuel(ed) my fears is now like a crossed off grocery list halfway through the store. I’m not sure what that will mean, and I still shudder to think of what I may or may not have to add to my column of coping. But I do know this, my power to persevere has served me well and when it comes down to it, living this life of challenges is always better than the alternative. And conveniently the world of medicine and pharmaceuticals is working hard every day on my (and my peers) behalf to make sure that the second half is easier than the first. How great is that?
The progress of MS SoftServe is slow and steady.
As I work towards the immediate goal of editing the interview footage that will support an explanation of the site, I am seeking the balance. It’s a balance many struggle with. Full time employment (administrative staff at NYU-Tisch Film and TV), home life with my husband ( a photography professor and artist) my 6.55 year old daughter in first grade; a welcome distraction with homework, games, violin, conversation, reading and must see movies. (Horton Hears a Who ) Oh yeah, and a certain amount of maintenance :). And of course Multiple Sclerosis, something most of the people reading here can relate to, throwing in a new challenge on a daily basis.
Yet secretly, behind the scenes I’m editing and writing and planning. Sometimes it’s not in a tangible way; sometimes its progress that is only evident on a neuron-ic level. Keeping company with my myelin, or in some cases a lack there of :), it is progress that I can be excited about.
On a more obvious level I am working to start my consulting business SoftServe Central- Educational Concepts in Online Learning. Using my expertise in instructional design combined with almost 20 years of MS (come June 2008) I consult on how to design ideal education for those of us with this label, this lot in life. How to speak to us, the patients in a way that recognizes what our experience is and that we are unique individuals in spite of a common diagnosis. To explain how to connect with each of us with our individual version of this disease without alienating any one of us.
I’m also in the final stages of developing a non-profit organization called SoftServe Matters (grey matter, white matter, your funding matters!) whose mission is to create educational websites for individuals who need to learn about any disease in a customizable, reduced anxiety way.
Then there is my blog and the greater world of MS bloggers. I would love to sit all day and read and write. I want to tell the bloggers I’ve read (and continue to read) how significant what they are saying to is to the MS world and the greater world of people who also happen to be patients. I want to connect to more people, who like me and many who I have met, struggle to learn about their constantly evolving unique version of MS at a safe place that to be confident we aren’t going to learn about things that aren’t relevant to us; facts that will cause anxiety about our uncertain future. (I want to edit that last run on!)
I want to work on MS SoftServe, a solution that is waiting patiently for funding
I have to keep this hope and desire quiet while the rest of my life happens. I need to find balance. Don’t we all.