I ‘m not sure how it is that I’ve set up this blog to discuss my life of learning with Multiple Sclerosis, yet I haven’t once mentioned the web site I’m developing for that very purpose. With that I have set up a new category….MS SoftServe. To read up on the status of this site just check of the category on the right. There is much to report!
Category Archives: LOL-Day to Day
Stick to it
I’ve been using the aforementioned vertical stabilizing instrument for 1.5 weeks now. Like my husband suggested, It is the initial phase of a social experiment; one that I am also a test subject of. This technique might be inappropriate for anything to be considered statistically significant…but for me it removed the overarching fear that I’m progressing. The data it did provide was unexpected- on many levels.
Phase 1: The issue of how to make this stick work for me.
Stripping away all of the emotional implications, I had to consider how I was going to schlep this additional item during my concrete jungle expedition. I imagined it in four stages. The first was walking out of my house and across the street to the train station. There were many possible places that could now could be viewed as obstacles in the first jaunt alone. I had to get down my stairs, and cross the street and then get up the stairs to the platform. I did this pretty effortlessly most days. Of course when my balance became compromised it changed what is the default normal. When this episode began it was the snowy ice period of January just to kick things up a notch.
I had seen my new physical therapist who trained me on how to use the stick…as if one foot/leg is weaker than the other. It wasn’t the most intuitive process…and I quickly realized that it wasn’t compensating for my unpredictable foot-drop. What I was doing was adding a limb to confirm my connection with the earth… a tripod of balance. Once I figured this out, I became be less rigid in the process. I began to move the cane back and forth between hands as I needed it- not forcing myself into a regimen of usage that felt more military than assistive.
After a few days… I became emotionally comfortable carrying this thing around. When I was seated, or it was in the way… I magically folded it up and stuck it in my back pack. When the time is appropriate I would pull it out and it would snap in to place. Not unlike those collapsible magic wands that droop unless you hold them just right.
So with that check mark completed I was able to take notice of how people respond to me. Right off the bat there were some exceptions made on my behalf. Those New Yorkers aren’t had cold hearted as the movies would like to portray. On my first subway ride with stick in hand a young woman offered me her seat. Cool. When I walked up the subway stairs on the first day… hanging on the banister as usual—cane present but not used… I could feel the explanation of why I was talking so long…falling off of my back pack. This is very cool. For the first time in almost 20 years I had a signal to the world that I have something to contend with that goes beyond a first glance.
This is very interesting.
more later…
To stick or not to stick (Follow up to the entry below)
Warning: This entry may not be suitable for anyone with MS who doesn’t want to learn about symptoms that may never affect them~ Proceed Accordingly!
Stay on target.
The last part if this entry was inadvertently deleted on my palm pilot during the commute. This had served as the subtle hand on my shoulder to get back to the point.
To Walking Stick or not To Walking Stick
So with this recent episode the steroid results were slow to come. During that time, I had more time to think than I’m accustomed to. Dealing with the past month of falling, stumbling and feeling at odds with gravity, I started looking at my place in the world on a physical level. I need better stability. This was not easy for me to recognize, or acknowledge. I always felt that my doctor would recommend it if it was necessary. Apparently that is not always true, although it was a good defense mechanism if anyone from my family questioned me about it.
I have found as the primary member of my treatment team, that the physician waits for the expressed need. This of course is only true for the more subtle symptoms of this disease.
Sometimes it’s difficult for me to have perspective to assess when I’m living it. When one is dealing with the emotions of new symptoms and just getting through everyday it is hard to see the big picture. So when Keith mentioned it – the consideration was brought to the top of my to do list. Because he always provides the stabilizing arm wherever we go it made sense to take his observation seriously. It was a nice affectionate metaphor that was as natural in our marriage as how we prepare each others hot beverages. (tea for him, no caffeine lots of agave- coffee for me skim milk 1 tsp agave.)
The problem was more evident when I commute in to NYC without him. I easily blend into the sea of people leaving Penn Station like a scene from Exodus. I would walk as quickly as possible hoping to get a cardio workout on the fly. Slowing when I hit the stairs to the grumble of those behind me. In the last year or two I would really push myself to move as quickly as possible. I avoided this for years, not wanting to be in touch with the line of limitation. Unfortunately this extra push backfired when I began to lose my balance and experience foot-drop. So when I fell, I did so with much greater force. My hands may break the fall, but my face ran a close second. Quite a spectacle at Penn Station!
Cut to the Chase
So the need for vertical accompaniment is established. Now I need to get the mindset. For this, my husband is a genius. He suggested that I treat the whole change as a social experiment. Not unlike Gloria Steinem, feminist writer as a playboy bunny or fictionally as Gregory Peck in A Gentleman’s Agreement a reporter pretending to be Jewish- I could take on the real life experience of anonymous commuter who has a cane. How would this change my commute? How would it affect my reality with this supportive item?
Tune in next time to find out. (Thanks for reading!)
To cane or not to cane: see warning!
Warning: This entry may not be suitable for anyone with MS who doesn’t want to learn about symptoms that may never affect them~ Proceed Accordingly!
On December 12th I found myself in Dr. Miller’s office explaining the more pronounced symptoms that I had been experiencing over the month prior. Nothing totally out of the ordinary, just a bit more present that usual. I had dizziness, lack of balance and foot drop. (the involuntary drop of a foot when lifting it while walking. This invariably resulted in a more intimate relationship with the sidewalk, if you know what I mean.)
All of these symptoms made periodic appearances in my day to day, which made it difficult to determine when I needed to see my doctor. It was when I lost balance standing still that I decided this was not your normal come-and-go symptom. I was in front of my washing machine assessing its contents when I suddenly ended up on the floor. Now that was a clear signal!
I have a tendency to downplay my response to my ever-evolving symptoms – for my own preservation as well as for my family’s sake. Optimism and the ability to deal with a challenge is part of my fiber. While serving me well in most scenarios it can sometimes work against me.
One area is that my family assumes that I’m handling it well and don’t need any assistance.
The other is that I’m caught completely of guard when my Dr. recommends advanced treatment, as was the case in this situation- “Five days on a steroid drip.”
No problem. Been there, done that. Two and a half years ago I had a limp that was more dramatic than your average foot drag and the steroids whipped me back in to shape in no time. Hell, I even went to work after a morning hook up. This could even be fun. Added energy, higher metabolism, more time to work on my blog, my website, my business plan. I could definitely deal with this!
So, like an overly confident weather forecaster, I planned my month. And, not unlike the weather… it didn’t turn out like I expected. You would think that as a twenty year veteran with this unpredictable disease I would have learned to expect the unexpected.
I guess that for survival purposes it is equally important to have a sense of control. The need to predict is an important part of that…. more on this later.
Blog Rhythms
A lot of time has passed since I last wrote. Finding a blog rhythm is a curious process, writing to no one and everyone . Over the course of my teenage years I kept a diary, keeping track of the trials and tribulations of a troubled teen life that I would soon rather forget than have memorialized. Yet when my life became worthy of documentation, after my diagnosis for instance, my emotional turmoil and the energy required to merely exist was too taxing to document. Although my memory for detail is strong, I long for the specifics that only a diurnal record can really capture– to fill in the dates and details that my brain has glossed over as a coping mechanism.
It is a familiar concept… once life gets interesting we are too busy to seriously reflect on it. As with a recent episode, not having previous experience with the sudden onset of compromised sensory symptoms, I was too busy trying to live through it to consider researching it. Not researching has become my knee-jerk reaction to any MS related issue. In fact after almost 20 years with this diagnosis, I find it hard to imagine what it would be like to have a resource that I can trust. One that allows me to set the parameters. If I were to establish MS SoftServe immediately, I wonder how long it would take to me to work it in to my daily rhythm.
This Blog…a greater purpose.
This blog gives insight in to the day-to-day experience of having this disease…on an intellectual level. My thoughts are that by explaining MS to as many people as possible will help a growing community of individuals with MS be better understood. I hadn’t realized that when I set out to share my thoughts on this blog that it could be more than a diary a shared experience. My intension in sending this link to all of my life connections was that many people know individuals with MS and might recommend this site to them.
As I began writing of my experiences it became quite clear that this Life of Learning with MS is also a Life of Teaching. This is no surprise to me as it is a siginificant part of the website I have developed- Learning how to teach others about MS. What I didnt’ expect was that sharing my experiences was a form of teaching. Teaching a little more to people who don’t understand or know what MS is. Giving them insight in to my experience is not only satisfying for me, it is also a good thing for everyone who has been diagnosed –as it will make them better understood and more comfortable.
I was surprised when I began to receive feedback about my blog. I had imagined that once I found an avenue to get the word out, that I would be creating a space to dialogue with people like me who have MS experience similar challenges in learning. So I began by sending out the link to everyone I know with an email address. It seems that everyone knows someone that has MS- or at least someone who knows someone. Six degrees of separation are more than necessary to make that connection. And I did get connected in many surprising ways to individuals who have MS and want to read what I’ve written.
What I didn’t expect however, was how many of my more immediate social contacts would benefit from reading it. Instead of it being a conduit to people with MS it has become something bigger. It is an inside line to a life experience with MS. Some friends and family hadn’t really understood what my MS experience meant. I didn’t realize this was the case until I began to read the feedback. Like the website I’m developing for people with MS and the people in their social web- This blog is for anyone who wants to better understand people they know who have MS and that including people who know me. I return to the overarching goal that the more people who are educated about multiple sclerosis, the more comfortable people with MS will be in their world.
After almost two decades with MS I didn’t realize there was need for more of this level of comfort. I speak very openly about my experience. But, this blogging communication is very different. Having a venue to express my feelings and experiences and then reach out in such an enormous way is truly remarkable. I’m hoping to connnect to an even larger group- those with MS and beyond and continue to teach it forward.
Do I have to??
So this weekend (6/3) I’m going to a learning symposium offered by the NYC chapter of the MS Society. The topic is immunology. Truth be known I probably wouldn’t be going were it not for the film presentation that is part of the lecture. I offered to connect the NMSS to a student filmmaker for the project. That student (now graduated) was my T.A. This connection gave me the bird’s eye view of the entire production.
On the day of the shoot-which took place in an immunology research lab -everyone in my office went along to assist. I watched and listened to the filmmaking process. Sometimes as a filmmaker observing the possibilities for different shots, and speaking with the film “crew” about thoughts on the images that will make the piece more engaging.
As I listened to the research scientists speak about their life’s work, their findings and efforts towards a cure, I was suddenly the only person in the room who has the disease they are taking about.
As they discuss the mice who have been genetically altered to spontaneously develop AES, it’s what is happening in my brain that they are most interested in. So while everyone is busy asking questions that will flesh out the film, I’m working hard to not think about what my T-cells are doing, and whether or not any are making the journey across the blood/brain barrier with desitnation neuron.
So it’s a constant battle in my brain, no- in my mind. I’m a filmmaker, I’m a patient. I’m a filmmaker, I’m a patient, harkening back to the movie Chinatown in an emotional slapfest.
Once the film was completed I watched it, trying to keep my head in the “Life-of-Learning” mode. And it worked. I was able to watch the film as a person with MS who wants to learn more and for that pupose I think it successful. Also successful was my attempt at keeping my editor’s eye closed as I critiqued the subtle flaws that were symptomatic of a film that was put this together so quickly.
So now I’m faced with to go or not to go. Of course I’d rather be home with my daughter and husband… that’s a reasonable excuse. Adding another commute to my week isn’t exactly appealing. It is also a very hot time, and heat doesn’t do me well.
Let’s look at the other side. It would probably be educational. Having the opportunity to asses the learning environment from the instuctional design perspective is the root of all that interests me at the moment. It would better inform me about how this has changed – or I have changed since my last meeting in 1989. Can that really be how long it’s been since I’ve attended one of these things?
Flashback to 1989 (feel free to insert wayne’s world gesture to the tune of dreamweaver.)
As I fought my fears with my desire to learn I decided to give the MS Society a try. There was an event for the recently diagnosed at a local community center- maybe that would be better. So I dragged a few of my newly found friends at film school to this event. My fear was apparent from the moment we parked the car. If a symptom list in a book is the script of my new life story, I found the made for TV movie, the ABC after school special
Now my fears were technicolor. The house landed and we aren’t anywhere near Kansas. The room was filled with variations on a theme. I clenched my teeth through a round table (or circle of chairs in this case) discussion with a participant who couldn’t pronounce exacerbation. On my way out the door, I met a woman with invisible symptoms like mine. I told her I was a film student, to which she replied “I hope nothing goes wrong with your eyes” Thanks, I hadn’t even considered that.
So things have changed in my life since then. I’ve had MS for 19 years now, so I have had some time under my belt with the uncertain future and I’m more comfortable with it. This could be an opportunity to put it to the test, to acknowledge the differences in who I am now as opposed to then.
….tune in to next time to find out how it turned out.
Losing Someone Twice
How do I write about a person that is (was, continues to be) so present ( important, instrumental, needed, loved, ) in my every day. I always knew how significant Linda Morgante was in my life. When she left the role of nurse clinician at Dr. Miller’s office more than a year ago I was able to tell her just that. The sense of loss at that time was immense. She was the very wise, sensitive, caring, strengthening part of my regular visits. Yet she was more than that. How do you put in to words a relationship that is/was so profound? Every comparison, every model falls short.
When you are diagnosed with MS it is at first a new label, an identity that you don’t identify with. In my case the diagnosis preceded the forming of my identity. At 20 years old I was still discovering who I am and learning how to be an individual, separate of my family. Who I am today is inseparable with the label. MS has defined me. It has inspired me and motivated me in the challenges it throws my way. It raises the bar of what I can manage, deal with, and incorporate in to my everyday. I am defined and redefined on a regular basis. It is what living with a constantly changing, totally unpredictable, completely unique, and currently incurable disease does to you.
So as I am constantly reinventing myself I have a guide.
Of course there are others who guide me. I have a supportive family that helps me manage my life with MS, logistically and emotionally. In those roles I’m supported, loved and needed. That need is wonderful. I find strength in the role I play in my family as a mother, wife, daughter, sister and friend – I know how much I need to be there for my family. It’s reciprocal. Maybe that’s where Linda’s role in my life is so unique. For 10 plus years Linda guided me through the everyday of living with MS. She was to me the mother, sister, friend, confidant, and also the nurse. Just the sound of her voice was enough to put me at ease. She was completely available to me as her life was dedicated to support people managing MS. She was not only the resource of a wealth of information, she could listen like no one I know in the world of medicine. She sympathized without being dramatic or condescending. She knew me in such a unique way. I struggle to find a parallel. I do know that I never had to explain myself beyond the specifics of my symptoms. Her every response was exactly what I needed.
While still at my doctor’s office she supported me in my work. She filled out surveys and appeared in my prototype website that represented my thesis. She encouraged me in my efforts to get the site produced, connecting me with people at the MS Society locally and nationally. She exhausted the role of friend, mentor and nurse. After she left the practice, Linda went to teach students how to be a chronic care nurse at St. Joseph’s College. I told her that the only reason I was letting her leave without a fight was so that she could make more nurses like her.
She passed away a short time ago at 55. She courageously fought an aggressive cancer. The news of her passing was an outright shock. It was a haulting train wreck in my life.
I spent a week after the news of her passing in a daze. The Kubler-Ross stages had started to play out as I tried to find a place for myself in this world without Linda. To say this was/is a difficult time is an understatement. Attending her memorial service helped. It was not surprising to find myself in this enormous crowd. She touched so many people as she did me. It was soothing to hear how the eulogists spoke of their relationship with Linda. Her colleagues, her husband, her friends– all told me about a Linda I did not know. The person she was along side of the Linda I relied on, I cherished. But the information that was so healing was what her last months were like. I didn’t know she was ill. I had busied myself with the process of work and life and let months pass without connecting to her. Hearing how she handled herself to the very end was so significant in my effort to accept the unimaginable. It is not surprising to learn that she was optimistic to the end. Also not surprising is that she was more concerned about everyone else in her life. This was also seen in her instructions for the memorial crowd to take a drink and celebrate her. That was easy to do for a moment.
What was hard was to continue on in a world without her. Although I had been living with MS for 8 years when I met her, she filled a role that I wasn’t aware existed. She was my first guide, companion, confidant, friend, and teacher in this life of MS. A teacher in my life of learning. I carried her with me throughout my life in ways that I didn’t even realize. Every day as I manage my life with MS I remember what she taught me. What happened subconsciously over the years has now become painfully sharpened. Every injection, every catheter, every throng of spastic pain, every question that I have every single day- I remember what she taught me. Her voice is always alive in my mind putting me at ease. In this way she will always be in my present tense. The magnificent person she was/is will never end in my life. It is that gift that is always in the now… the present tense.
Linda, I will be learning from you forever. I love you for all that you gave me, and what you continue to give me, every day.
Thank you.
Teach it Forward – The dentist epsiode
Last week I went to visit my dentist (something I do all too often!) and he asked how my website is going. I began to describe the status, and referred to my online experiences that bring out anxieties. He saw that as a sign to wax poetic about all of his patients with MS who he’s watched get progressively worse as they have come and gone over the years.What was he thinking? Does he know that even though it doesn’t look like it, I have the same MS as the patients he was describing. I may be one of those people who comes and goes from his office, for him to watch as I lose abilities. These are the images I would leave his office with.So I paused. Clearly he does not understand the variable nature of this disease. So I will have to explain. ” That is just the information I’m trying to avoid.” Now I am the teacher.This discussion is not something I would have attempted early on in my disease. I would have been wounded, not said anything, and left the office angry. After 19 years of MS my approach has changed.This is my MS; it has shaped the person I am today. Once I took ownership of it I realized that better educating the people in my world helped me feel more comfortable. The better understood I am, the less explaining I need to do. But it also has a greater effect. MS is not rare. There are many people “walking” around with this diagnosis. The more individuals in the world who understand what MS is, and what it isn’t the better off we, the diagnosed people, are.Teach it forward.Hopefully the next time a person with MS sits in my dentist’s chair he won’t ramble on about details that would make his patient feel anxious, and his patient will feel better understood. I know I will.
This I Believe: Telling Madeline
I wrote an essay that deals with talking to my almost 6 year old daughter about Multiple Sclerosis. It is posted on the NPR site “This I Believe“. It is also on its own page in this blog along with an explanation of my experience writing it.
MS~LOL: Multiple Sclerosis a Life Of Learning 