Tag Archives: multiple sclerosis

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MS SoftServe- Getting There

Today was a good day of shooting. I have a set up in an adjacent office and Bonita (my webmaster/director/vegetarian cook adviser extraordinare) assisted as we embarked on our third day. It’s easy for me to get honestly enthusiastic about the website in spite of the fact that I have been discussing it for 3 years. I guess the hard part is getting me to stop talking… and focus has always eluded me. 🙂 What I set out to do is explain what MS Softserve is, why we need it, and ultimately what this “staging ground” concept is.

From the very beginning I have surrounded myself with great advisors. I think that is truly a skill I have mastered in my late thirties. Being married to and artist, photographer, instructional designer is very helpful. Keith’s creative thinking and strong resources have proved very helpful in this process. One such connection is to Doreen Stiskal, a PT Phd who is also an expert in Instructional Design. As I was completing my thesis, Doreen and a number of other individuals from Seton Hall (where Keith worked at the time) offered a critique and practice presentation which turned out to be particularly informative. Much of her early observations shaped my presentation. So as I set out to produce MS Softserve I sought her counsel yet again.

She had some terrific advice. As we discussed all of the areas that I am working towards expanding… she quoted Guy Kawasaki “Don’t worry, be crappy.” (“Revolutionary means you ship and then test… Lots of things made the first Mac in 1984 a piece of crap – but it was a revolutionary piece of crap.“) That really spoke to me. I could work forever on what this needs to be before I launch it. At that rate it will never get launched.

Get something up there. And start filling in the blanks as it is developed. She sited Brad Pitt’s effort to rebuild New Orleans one room at a time. You can sponsor a bathtub if that is the level you want to contribute.

Recently Madeline was invited to a birthday party where in lieu of a gift, it was suggested to donate to heifer.org What a great way to explain charitable causes to a little person. On the site you can contribute real things to real people. She decided to donate her money to bring a box of chicks to a family in Africa who can use them for to start a business.

So, with that in mind… you can go to MS SoftServe and choose one particular area of study to have developed. Perhaps your are a big fan of the Central Nervous System and you want to see that prioritized. You can make a contribution to complete that entire section. If you would rather contribute a lesser sum, you can sponsor just an animation in that section. The map of progress will be the key to see what areas have been completed and what is to come.

This site will thrive as people with MS help to shape it. Participation can occur on many levels. Whether it be the content of the site or the methods of learning, you can put your mark on what this site becomes. By doing so, you will help the site to serve a wider audience.

more later…

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MS SoftServe TimeLine Entry 1

As of today we have finished taping the video for the staging ground of MS SoftServe. The website is being produced, the video edited and the content developed. We expect to have something running within the next two weeks.Keep checking back under this category. (MS SoftServe TimeLine)Feel free to post your thoughts!We’d love to hear from you.Amy

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yes i CANe

So the normal disclosure… if you’d rather not hear details of my MS experience that may make you uncomfortable about your uncertain future… consider yourself advised.


I’ve been using my walking stick for almost three weeks now. It didn’t take long for me to get used to having it around…and to learn how to juggle it with my commute gear. My backpack, my water bottle, my reading material, my ipod, my train tickets and then Metrocard. It takes some practice..but I’m finding the rhythm.

I’m move back and forth between considering what my needs are and how I am perceived. It shifts from day to day, minute to minute and scene to scene.

What started as a strange feeling that I am perceived as someone who is faking it… evolved into a better understanding of why I need this. Because I clearly don’t have problems with my gate (unless I stumble with a foot drop once in a while) it occurs to me that it almost seems unnecessary for me to be using it. I felt questioning gazes that I answered for the first two weeks with a sticker I put on my cane that read “I have MS”. The gazes turned to squints as subway passengers sat across from me looking my way.

I was reminded of the attempts I made as a young person (middle child) searching for that extra attention. The ace bandages and slings on perfectly normal arms, wrists and ankles. The troubled looks beefed up by eight year old winces wanting to stay home for a little extra mom-time.

But this was legit. Even though I was using the opportunity to examine how people treated me with this implement… I legitimately need it. It wasn’t a show.

As I got used to carrying it… and using it to provide extra support I found that I was able to move quite quickly with it. It seemed that as moved with the crowd people would frequently bumpt in to it, kick it, and one time a woman actually pulled it from my hands (inadvertently) when giving it a “flat tire”. Very apologetic of course.
During this time I questioned my role with the cane further. When leaving and arriving at work I had it with me and people I interact with daily expressed concern over my well-being. Most don’t know I have MS. My response to their concern changed over time. What started as a sometimes detailed explanation (I always try to educate whoever I can about MS) became “I have balance issues”.

It was a funny coincidence that during this period the Science Times had an article that described a more dramatic situation than mine. ( PERSONAL HEALTH; A Stable Life, Despite Persistent Dizziness – New York Times JANE E. BRODY)
Somehow finding this explanation helped me to identify myself in a more comfortable way. And even though no one asks me why I’m using it, I tell myself throughout the ride. “I have balance issues” and somehow that feels good. Not, “I have brain damage”, or “I have an uncertain future” just balance issues.

I like that somehow. I can own it. And the cane… just shows that I have more to contend with than the average joe (or jane..as it were) commuter. That works for me too.
more later…

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MS SoftServe- A life project in progress

Tomorrow when I get to work, I will be using all off-moments to videotape myself speaking about the important aspects of MS SoftServe. It feels like I have been working so hard on these incremental accomplishments toward to larger goal.

Yet in spite of my constant effort…and my ongoing advances, there are days when it feels out of reach. Days when actually writing about my progress on my blog seems insurmountable. If I just pass this small milestone (getting http://www.MSSoftServe.com up and running in a skeletal form, get SoftServe Matters approved by the state as a non-profit, get people to come read my blog and develop an audience, figure out a way to work on all of this full time, start planning a fundraiser for MS SoftServe…) then it will all fall in to place. Or will it?

Maybe this is what starting up always feels like. Forging ahead with a life dream that is self-guided is probably full of these mini-accomplishments that mark the bigger picture. I look forward to actually having a moment to spell my whole project out to anyone who might be reading this. I look forward to having a place to create all the MS SoftServe proposes. I look forward to benefiting from what the SoftServe approach has to offer.

But for now, I look forward to going to sleep!

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Life– a work in progress

So here I am, 1.5 years after finishing my Master’s Degree working hard to get MS SoftServe produced and made available to the people that can use it- myself included.  I’m working my day job at NYU Film and TV, surrounded by inspiring individuals who are supportive and motivating. I come home to my husband who is both those things, as well as my daughter who is a magical person.

Madeline amazes me in how she takes life by the horns and simultaneously needs so much. It’s what raising a child seems to be all about. The give, the give, the take, the take, the take. On some days I feel that the life force is sucked out of me, and on others I feel like I just want to write down everything she says so that I never forget it.

One such moment occurred last week. Madeline has started ice-skating.  And like everything she tries, she starts out with a verve that is unstoppable.  She took to the ice quickly and in no time was circling the rink in a jerky stops and starts. Never quitting. We stood amazed.  Keith, being from Florida, isn’t interested in getting out on the ice and falling and standing and falling and standing.  I, of course have the more detailed explanation of why I’m not trying.

Standing on the side with my collapsable walking stick, I remember the times I went ice skating as a kid. Not a pro by any means… but I used to enjoy finding my own rhythm and even-paced speed. Decent enough to get by. I’m not comfortable being on the sidelines here. It feels like I should be out there with her. That pull doesn’t usually happen because Keith is always there. He is athletic and I never was. He plays with her in an energized way and coaches her through wide array of sport activities. I have no problem stepping to the sideline for that. But ice skating is my childhood. I should be able to show her how to do it. The two of us are on the sidelines watching in what felt like a useless position for parents to be stuck in.  If she needed help out there… we had no access to her.  Our friends jumped in there…offering a steady hand when she started to fall.  I kept my spirits up and remained enthusiastic for her accomplishments on the ice. It was her first time and she did great. We were really quite amazed.

That night we were having difficulty getting her to sleep. She was so psyched up about this new activity.  So I was plugging thoughts in to her brain like I do every night.  “Why don’t you dream about…. being a champion ice skater?”  She said  “mmhhmmm”.  “But one more thing mommy. I also want to be a doctor with a magic wand who cures everyone with MS, and then you could go skating with me mommy.”

It’s those moments…..

I bite my lip and squeeze my daughter and thank whatever force of life exists that controls the crazy ride we are all on.

(and then I start typing.)

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Mind Blowing

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!

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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.