“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.
MS SoftServe Update
This week I began the first fundraising outreach for SoftServe Matters, Inc. (SSM) Its mission is to provide meaning for learning about chronic illness on the Internet. If you are reading this without knowledge of MS SoftServe, or SoftServe Matters this video should fill in the blanks. And you can read the work-in-progress entries in the category column on the right- MS SoftServe, etc.
So after setting up the accounts for the nonprofit, and paypal.com and justgive.org and my Web-Master-Bonita made the appropriate adjustments to the site in progress- We are now an active fundraising non-profit. Lots of hard work went in to making that happen… but a tiny portion of what lies ahead. Right now, in fact, I should be writing the “business strategy” and budget, so I can start applying for grants. If anyone out there has any suggestions, or fundraising ideas- speak! 
I’ll report back soon!
Thanks for reading.
SoftServe Matters, the non-profit engine behind MS SoftServe.
Two weeks ago I participated in a NonProfit Boot Camp put together by Craigslist Foundation. You know, the people that have given us access to information (fab sales!) in our community. In addition to getting a lovely dining room table, I can thank them for providing a new level of motivation in getting SoftServe Matters up and running. The timing for this was perfect as I just received a call from the IRS that my application for 501c3 (tax exempt) status is nearing completion.
So, let me take a moment to talk about MS SoftServe, its origins and SoftServe Matters the non profit that is dedicated to providing meaningful learning about chronic illness on the Internet.
While getting my Master’s in instructional design in 2006, I realized that the problem I have with learning about my MS is universal, and can not only be resolved, but it can also become an empowering tool for all patients with chronic illnesses using the technology of today.
I, like so many at diagnosis, struggled with learning about MS. The anxiety of not knowing what I would be coping with the next day, month, week or year made it impossible to learn more about this disease. Everywhere I looked I feared, Will that be me? In 1988 the Internet as we know it was not yet available. Any effort I made to learn more from the resources that were available back then resulted in paralysis by fear. As a college junior I struggled to come terms with this unknown in between my studies and filmmaking assignments. Twenty years later my struggle continues as a variation on that theme.
While I was afraid to learn about the diagnosis in 1988, the twenty years of living with MS forced me to revisit that emotion over and over again and I continue to do so to this day. As I learn to cope with the changes in my disease, scenarios that may include a future with the symptom de jour play themselves out in slideshow form. I want to be my own best advocate, to learn all there is to know about managing life -not only on a symptom level, but also the disease itself – and all of the scientific advances in treating MS. I want to learn about how to choose medications for the varying symptoms, and cope with their side effects. I want to be the master of the unique disease I have, so I can teach to world around me what I’m experiencing and why its happening. But I continue 20 years after this diagnosis to tread with fear when I need to learn.
The Internet affords us so much access to information, its difficult to remember a time when we didn’t have the answers to things. And while it is a wondrous resource for facts and information (No more social bets of who was that actor? and I think I saw him in the last Woody Allen film … leading to furious page flipping!) trying to learn about anything that has emotional implications is practically impossible.
Multiple Sclerosis is completely unique for every person. That fact is at times frustrating and at times reassuring. Yet because there is absolutely no way to predict what is going to happen to you, (or me, in this case) I am left vulnerable to those possibilities. And that is exactly what is force fed to you when you sign-on to learn something. Every possible consideration is thrust at you, challenging my ability to cope with what I already have on my plate; and making my fears and nightmares more specific.
So, from this ongoing need along side my recent education in instructional design I created an approach that would be the key to harnessing this vast amount of information. It would allow for every person with MS to log in and establish her/his preferences of the what and how s/he wants to learn about her/his disease. The learners are in complete control from start to finish. Creating a safe space for learning about their version of MS. Through scaffolding, as opposed to lists the user will deliberately choose the specifics of the lesson. And once there, s/he will be able to establish and save how s/he prefers to learn.
I know from my experience that I am a visual learner. If I can see a short animation describing a concept it is much more likely to stick with me. That isn’t the case for everyone though, some people prefer to read it, or download and print it. Maybe s/he want to watch and listen to a medical professional describe the concept, or a peer with MS. This site will provide multiple options of how to get the information you are looking for. It will also provide an opportunity to chose the language level that you prefer. (Simple, Everyday Scientific) And the site will go beyond a customized MS education. It will be a space where people can interactively learn how to talk about their version and teach people about that unique experience. There will be a place that demystifies the News about MS, and a space entitled Understanding and Communicating with your Doctor. The site will be filled with powerful tools for managing a life education about MS, such as creating an online space that is individualized– a URL for friends and family to sign on to to learn about your exact version of MS. (Forgive me for what was a pronoun nightmare in that last paragraph!)
For a person with MS it will be a safe, reliable place for information and education…one that is customized to meet her/his individualized needs through customization.
SoftServe Matters is the non-profit organization that will fund this and other sites for a variety of chronic illnesses.
Because coping with a chronic illness is a life of learning. And why shouldn’t we have a place that knows us and works to accommodate our needs; to empower each of us to be our own wise advocate and the educator of all who we come in contact with in life.
It’s a level of control we all deserve when a lack of control is what we are all too familiar with.
I encourage you to share your thoughts here; and thanks for reading!
~Amy
MS SoftServe Update July 2008
I suppose it is better to date these ‘checkins’… because listing them in numeric order can be hard to keep track of.
As some of you have been following, I’m dedicating every free moment outside of my job, parenting and blogging to the production of MS SoftServe. Incase you aren’t one who is in the know, MS SoftServe is a website dedicated to customizable learning for people with Multiple Sclerosis. A place for the person who has MS to control the information they are getting and how they prefer to learn. This is an empowering method that prevents anxiety as the person determines that what and how of the process. (Check out this video for a more succinct explanation.) So the ongoing question is… What’s going on with the SoftServe thing??
If you’ve been checking back regularly, you have noticed that the development of MS SoftServe has paused. So let me take a moment to tell you that behind the scenes a lot is happening. Although it seems like a fast paced game of hurry up and wait… what it really entails is getting the message to as many people as possible who recognize the need. Although I have assembled a great deal of information to do that virtually, it seems that their is no replacement for the impassioned pitch. And that’s what I have been up to. So, I’m off and running, with one pitch leading to the next. And they told two friends and so on, and so on.
I’ll let you know when I find a break through… or you will when site development pics up again.
Thanks for reading!
MS SoftServe – The word
So the documents are off to the IRS and although this means that I will be entering in to a new sphere of red-tape… I’m excited. Each small step brings me closer to the larger goal and that is very satisfying. Maybe the hurdles jumped and goals achieved are what is to be on the landscape of SoftServe Matters- the engine behind MS SoftServe. There will be web development and grant applications. There will be involvement from those who want to put their mark on SoftServe and ultimately more sites will be generated for more illnesses. Helping more people who struggle with information overload but want to learn.
And then there were faux pas.
So with the new video up on mssoftserve and youtube I thought I would reach out to the people on patientslikeme.com. It’s a site that I had set up my profile– which includes all of the details of my history with MS, the treatments and otherwise personal information that seems natural to share here. I would review the chats, being careful to steer clear of information that elicits anxiety. Sometimes I would make a comment, but mostly I would just read and listen to what people are saying. Hoping to add to my understanding of this diverse group of people that I am a part of.
So I set up a forum to inquire how people on plm prefer to get information about their MS. I explained what I’m doing and invited people to check it out and let me know what their experience learning on the internet is.
Imagine my surprise when I got this as a response:
“Please explain the reason for this post. I have looked at both sites and it is really confusing. I think the hmmmmmm is now what are you selling.”
“…..selling or smelling a rat?”
Ouch! Okay with further explanation the person retracted the “rat” comment… but that sure did hurt to read. I guess in these times one can’t help but to be wary of these types of things. I was in a bummer of a mood looking for a pick up when I signed back on the site. Hoping to see supportive comments and instead finding the contrary. It was unfortunate timing.
But it also was an opportunity to learn a lesson.. which I definitely have. In some ways it is like a code of honor. If you aren’t an active part of this group then it isn’t appropriate to speak to this group. Just being registered isn’t enough. The fact that I hadn’t yet posted much to the site was a red flag to the involved members that I am not one of their neighbors, and they have no reason to trust me. I get it. Now I’m chatting more, and blogging less. Hopefully it will balance out.
~
MS SoftServe, off and running!
Yippee! A triumph over the endless digital dilemmas, web master Bonita has figured it out (as always) and the video that describes the staging ground of MS SoftServe is up on the site! www.mssoftserve.com It’s also on youtube in an abbreviated way. I hope this video will help to explain why MS SoftServe is needed, and how we can make it a reality.
So now I switch gears to copy writer and layout artist (with the support of familial experts ) to create a brochure to spread the word about MS SoftServe to potential sponsors. Awaiting the delivery of the legal documents to register with IRS and get my 501c3 number. Then the fundraising aspects of the site will be functional.
For all of you out there who have expressed support in making this site a reality, I’m assembling a list that I will use as evidence of need when I approach sponsors. This will also serve as a mailing list for important announcements. While your writing… take an opportunity to request something that you would like to see produced on the site. The way to make the most of this site is for it to be a “For us, By us” venture. Join me in its development!
MS SoftServe- and so on, and so on.
When I started reporting on the status of MS SoftServe I think I had imagined something that would be more…. consistent. I don’t know… progression seemed like a reasonable expectation. Then reality happened and I’m reminded that with increasingly limited funds, a full time job, and a family its not surprising that this is moving slower than the polar ice caps are melting. (a sad metaphor, I know) Bonita, my web master, also has a fulltime job and while she has more free time, she longs to work on this fulltime. She lamented to me today that she pines for a time when she can labor over when something isn’t working for 24 instead of 16 hours. In the meantime I’m busy pushing 501c3 paperwork along so I can start researching grant applications, and I’m creating surveys, and writing proposals and sometime its hard to see the incremental movements. But they are happening. We are about to post the video that describes the need for MS SoftServe and the functioning aspects of the staging ground. On the home page of mssoftserve.com and youtube.
On a more exciting note, I met with Alex Lindsay, the chief architect of PixelCorps (The Pixel Corps is a guild for the next generation of craftsmen… digital craftsmen.) today. What an inspiring person. When I first met him in 2005/06 he was the spark that got me to “think big”. So that is what I did and thus I’m now connecting with him about how PixelCorps can develop elements of MS SoftServe. It’s all very exciting. The craftspeople at pixelcorp require production opportunities so that they can learn skills and experience the client feedback and interaction. There one requirement is that they don’t get paid. An ideal alliance if you ask me. Bring it on…
MS SoftServe- status
The web development is moving along. The video describing the need for MS SoftServe is edited and we are fine-tuning it. I’m hoping that my passion for this website will be evident in the video. I am by no means a professional spokes person, but my hope is that by sincerely conveying the real need for this customizable learning resource for everyone with MS (or any other chronic illness for that matter!) will be recognized. We will post it and plan for the rest of the staging ground to come together in a reasonable time-frame. (The eternal optimist I am!)
Our next order of business to create survey so that we can learn first hand what people with MS need/want to learn about. Feedback is gold when it comes to our mission. In more ways than one. With your input we will not only establish what this community needs- so that the site can be built to satisfy this need- but we will also be able to show the sponsors how important it is that we have a customizable site to learn from.
SoftServe Matters! (a registered non profit!)
I got the package yesterday…. a box containing a gold lettered book that is the official documentation of SoftServe Matters – gray matter, white matter, your funding matters! It’s non-profit entity that will fund the production of MS SoftServe and the subsequent chronic disease customized learning sites that will be developed. It was the most exciting package I’ve ever opened. The potential for what can be accomplished with this site has increased dramatically. Now I will pursue grants, tax deductible donations and fund-raising events to make this site a reality.
As with anything… I encourage the For Us, By Us model…so if anyone has any suggestions for fund-raising or sponsors…email me at amy@mssoftserve.com
As a community we are greater than the sum of our symptoms, so lets put our gray matter together and make this happen– for all of us to live a productive life of learning.
Sometimes
It seems like life is moving in slow motion.
Not because the activity has died down. In fact the opposite is true.
Or because I can’t move as quickly as some. There are moments in a given day, during a given commute, when I might even be called rapid.
This motion refers to something else that is happening underneath the activity in a day. In my day.
It’s the timecode. It’s the white noise. It’s the silent optical soundtrack.
It’s all the the things that I wish I could be working on,
the significant, meaningful things – that are cast aside – for the day-to-day diurnal noise.
I feel much better thank you.
