advocating from within
ad⋅vo⋅cate [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 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.
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.
MS Aware… ness
This past week was MS Awareness week. It’s this week that all of the organizations dedicated to eliminating the disease and supporting the people who are living with it turn up the volume so the rest of the world can hear. It’s got me thinking about the word- Aware.
I recently received an email from someone who was introducing themselves as so many do – with her diagnostic tale. She described her version of MS in reference to how it has progressed to a point that she is aware of it everyday. I immediately paused to consider. It’s an interesting way to establish one’s level of disease impact. So I try it on.
I was diagnosed at 20 years old with my identity still in its pupa stage. As a result MS is an integral part of me. The inseparable fiber of who I am. No matter what my symptoms are on a given day, if I’m breathing I am aware that I have MS. Of course my symptoms make it next to impossible to forget, but it’s much more than that.
It may be because part of my forming sense of self as a young woman was with the knowledge that my future would require an ability to cope. And because there was no way to determine what I’d be coping with, in both the immediate and distant future, I needed to learn to live with the not knowing. I think that was the most difficult aspect to wrap my head around.
In the beginning it showed itself mainly as fear. And not in the productive way that forces you to strategize and plan; but in an insidious way that derails everything. The kind of fear that takes every moment your mind is at rest and fills it with all the worse possibilities in scary detail, often with a dramatic score. (I was in film school after all- theatrics at the ready!)
But as the years went by this fear turned into something else. It had cadence and rhythm. What was imperceptible while in the midst of it, is crystal clear in retrospect. And while I’ve struggled to come up with words that effectively describe it, I immediately recognize it in others who have been living with these two letters for a long period of time.
It’s a verve that underscores our coping. A long history that informs and ultimately empowers our uncertain future. Maybe I would have been that person no matter what my life map looked like. Either way, I enjoy the resilience that I’ve earned. And relish in its constant application to what MS and life in general throws my way.
And the other foot-drops…
On the way to see my beloved neurologist last week I was thinking about my decision in December 2007 to use a walking stick- not an easy one to say the least.
For quite some time I had been tripping over nothing- though I never thought too much about it. I was branded a klutz at a very young age and always chocked it up the tendency to a flawed gene I had inherited. So when concerned family members asked me if I had considered using a cane- I defensively claimed that if I needed a stick, my doctor would certainly have recommended it. And thus the phantom obstacles continued to block my path, with many a bloody knee and an embarrassed moment on NYC subway system. I glossed over the absurdity of this all-to-frequent occurrence with a bit of performance art. Brief moments of flight followed by random explanations announced to everyone and no one. Look that sidewalk is uneven! It’s these shoes! These practical rubber soled shoes tripped me.
And so it went unchecked until December of 2007 when the dizziness arrived, an unwelcome guest who would never get the hint. What I hoped would be temporary became a new way of life. It was my husband’s inquiry that made me realize I would need to reconsider what I’ve assigned as my neurologist’s responsibility. Keith’s question has more power than my original family and it forced me to realize that my life requires another “foot” on the ground- a tripod if you will to help me navigate the concrete jungle as well as the bumpy green suburbs.
This need was reinforced when I visited with the vestibular neurologist who when testing my stability marveled that I would consider walking without a stick. Placing his own stick near his desk reminding me of Joe Gideon’s exam as the doctor and patient both had cigarettes hanging off their lips hacking away during his physical— only less ironic. (see All That Jazz)
So, where was I? Oh yes- my doctor’s visit. After the routine performance of move this, touch this, walk like this, tell me this- my Dr. said,
“What are you using a cane for?”
“To compensate for my foot drop” I say.
“Well foot-drop doesn’t show in your reflex test or in your walking test.” he said
“But it does show when I’m kissing the sidewalk!” I hadn’t thought quickly enough to say.
So I’m leaving his office wondering why my Dr. would question my decision – one that was very difficult to make- and serves an important purpose in my life. Could he have said “Tell me, why have you decided to use a walking stick?”
I know, I know. Dr.s treat diseases and symptoms while nurses treat people. How is it that they can’t be housed in one person? Is there is no time to teach it in those advanced degrees? And to think that I thought that my Dr. would have recommended it, if he felt I needed it. In addition to having this disease, and living with the constant symptoms and their physical/emotional effect- I have to be my own advocate. Any large company would view that role as a conflict of interests.
Hmmmh. I miss Linda Morgante more than ever.
I’VE HAD IT!
Okay.. I’m the queen of optimism here… Anyone who knows me- knows this fact. Since reports came back from my kindergarten teacher in 1973 it was on record. “Smiles, endless smiles. Amy is so happy, she’s a joy to have in class” Now granted.. this was news to my mom being that my home life was different. Ever since my sister came on the scene my role changed. Only 20 months younger than me, she catapulted me from center stage, and I hadn’t even sung my big number yet. So, my shining persona was not evident in the daily family experience. Imagine that.
Years later that sunny disposition and overall optimism “in-spite-of-it-all” has carried me through so many of life’s dire moments. And its that attitude that keeps me going no matter how hard MS pushes me back.
But I’VE HAD IT!!! (as previously stated!)
Of the myriad of symptoms I invisibly juggle everyday… Foot Drop has been an unwelcome repeat offender. To clarify.. Foot Drop is when your foot does not listen to the message to pick itself up~ so, at the all important moment, say when one is taking a step, the toe portion drops down… igniting a trip-stumble-fall scenario that is very unpredictable and usually humiliating.
Walking through the NYC streets and stumbling on nothing does not do much for your cool, unfazed city image. But since I was labeled a “klutz” long before diagnosis… it was not an unfamiliar feeling. I can only imagine how this disease impacts people who were dancers or athletes. For me, however, it was a couple of notches lower on the less than 0 scale of coordination.
And yes.. I’ve got many amusing/pathetic stories of kissing asphalt in NYC. This was one of my incentives for using a stabilizing stick on my commute. It has saved me from many falls since I added it to my routine. When I get to work (at NYU Film school) I walk the halls sans stick. Not because I’m working on a particular image amongst the students… it’s great to be an adult who is beyond caring about those things… but more because I’m comfortable in that space… and have things to carry- rendering the stick inconvenient.
So.. we are finally narrowing in on the story leading up to this interjection!
It was almost time to leave. A student asked me a question that I did not know the answer to… so I threw caution to the wind and walked 10 feet to someone I was sure knew the answer. On my return trip (as it were), approaching the staircase that was situated between the start and end point- I did just that. I tripped dramatically. I was as horizontal as one can be without flying (or sleeping) until I righted myself. I was furious!!! The spectacle of the matter didn’t help. There were many around observing me trip over a phantom item.. and as I pulled myself back up I was standing next to a faculty member who was leaving the staircase and made a light-hearted joke. This would normally have been how I would have handled this exhibition, but this time I was pissed! Dammit! I can’t even walk a circle of 20 feet without displaying my brain defect! And for some reason I wouldn’t laugh it off. I was furious. So, I uncontrollably stated: “You know I have MS right!? This happened because of an MS symptom! I have foot drop! So I trip over nothing!” Poor guy. Talk about being caught in crossfire. It was me and my MS and we were yelling it out for everyone to see… and hear. This particular faculty member is a sweet guy… we’ve always had such a lovely “hello-goodbye-have-a-nice-day” sort of relationship. And now, he found himself in the midst of my tirade of frustration and anger and he remained sweet.
So I left for the day with my stick supporting me through the commute home as I grumbled to myself about how I can’t even walk 10 feet without tripping. I was angry and feeling sorry for myself.
I was diagnosed with MS when I was 20. I never had a period of my life where I felt in control of things. Just as I was leaving my tumultuous teens and embarking on a life of my own… taking over the role of “boss of me” from my parents, I had a new boss. One that appeared unexpectedly and told me I couldn’t do the things everyone else was doing. One that has a job plan for me, but refused to allow me to be prepared for it. And once I got used to my new job requirements they changed. Everything becomes more challenging and my ability to meet the requirements are much harder. But in the end… I always matched them.
Days later it feels like a distant happening. Another story to tuck in to my over-flowing-suitcase under my bed. I’m not sure if being pissed really served me. I think I prefer to be strong and humorous. I suppose that makes this ride more tolerable.
And so it evolves.
