Is this really for me?

After MS Walk:Columbia 2010 was over, I felt a little lost.  For months now, all the extra time and attention I had has been going to fund-raising and preparing for the walk.  If I haven’t mentioned it before, I can have a very obsessive/compulsive personality.  Well, I quickly decided that even though the walk was over, my work with the NMSS was far from over.  From things I had and hadn’t noticed happening at the walk to grandiose ideas of how to spread awareness of MS and the NMSS, I was now on a mission.

I contacted the president of my local chapter and was granted a meeting with him.  I then spent the next week and a half pouring over facts and finances for both the Susan G. Komen Foundation and the NMSS .  I went over the website for the NMSS and my local chapter very carefully, trying to learn as much background material as I could.  The end result was a five-page report comparing and contrasting the Susan G. Komen Foundation and the National Multiple Sclerosis Society with ideas/suggestions that I thought could be implemented by the both the National Society and my local chapter.  That meeting might be a story for another time.

While I was exploring my local chapter’s website, I happened upon a section that listed self-help groups in the chapter.  When I was first diagnosed, I wouldn’t even entertain the idea of becoming involved with the NMSS, let alone attend a self-help group.   Back then, I was basically fine, and the thought of confronting what may turn out to be my future petrified me beyond belief.  Participating in the MS Walk was a big step for me, but I wasn’t so sure I was ready to venture into that unknown/scary world of self-help groups.  However, as I was briefly scanning the page, my eye was caught by my local group.  It was described as a mildly affected and supportive partners group.  This gave me pause.  Was “mildly affected and supportive partners” something I could do?

I called one of the ladies in charge of the meeting and talked to her for a little while.  She was very nice and described the format of the meeting to me.  She said that there would be some members who used assistive devices because their disease had progressed while being a part of this group and they did not feel it was right to ask them to leave the group.  I really liked that there was an hour where the spouses/partners/caregivers were separated and given time to talk about the issues that affected them while being part of the life of a person with MS.  I knew that this isn’t the life Ed thought he was getting when he said “I Do”.  Even though he was aware that I had MS, he had never been exposed to even the slightest of symptoms before my exacerbation when I was pregnant with E.  I talked with him and we decided that we would give it a try.

Unfortunately when the night arrived for our first meeting it turned out that we could not logistically (childcare related) find a way for Ed to attend.  We decided that I should go anyway.  I was actually a little excited about it. It turns out that even though I was on time, I was a little early.  There were only two other cars in the parking lot and they had people still sitting in them, obviously waiting.  I decided to call a girlfriend of mine and talk while I was waiting. Another car pulled in and slowly people started getting out of their cars. All of a sudden I wasn’t so sure I wanted to be here anymore. Everyone who got out of their car was using some type of assistive device.  I was describing this to my friend and I told her I wasn’t so sure that I was ready for this; that this sure didn’t look like the mildly affected group I had been told about. She encouraged me to go in anyways.  It appears that this was something many of my friends had been wishing I would do for quite a while now.  At this point she had to run, so I was left sitting is my car feeling a lot alone and a little scared.

I sat there for a few more minutes and just watched as more cars arrived and more people got out.  At this point, not all of them were using assistive devices, but I was still really wary.  I closed my eyes, said a prayer, opened my eyes, turned off the car, and got out.  The walk to the building entrance was a long one, and I’m not talking about distance.  I went inside, found the right room, and sat as much in the corner as I could.  People talked around me and I just listened.  I listened to very friendly, upbeat people talking about MS and about regular everyday events.  When they talked, you could easily forget who were the mildly affected and who were more advanced, especially if you closed your eyes.  Everyone was just there to be accepted for themselves and have a place where people understood where they were coming from. They asked me to introduce myself, and as I did, they all listened attentively and welcomed me warmly.  They had a physical therapist as a guest speaker who took up most of the rest of the meeting.  So I didn’t get to experience a real meeting, but that turned out not to matter.  As the meeting continued, more  mildly affected people did come in.  I guess the mildly affected like to make an entrance.  Maybe I should remember that. 🙂  However I’m not sure in the end that really made a difference.  I had already decided I would be back for the next meeting.

When the meeting wrapped up, people dispersed in their different directions.  I talked with a few people as we walked to our cars.  I will return next month, and my friend won’t feel the need to call me a half hour into the meeting to make sure I’m not still sitting in my car in the parking lot, and the walk from my car to the front door will take no time at all.



I never was a cheerleader, not really my personality, but in this case I will cheer as long and hard as I need to.  As it happens I really do like orange, and not just the fruit, in fact it is one of my favorite colors.  I have many orange clothes and I own two pair of orange eyeglasses.  So, as you can guess, I was very happy when I realized that the National Multiple Sclerosis Society was starting a campaign to associate their organization with the color orange.  Color and logo recognition are both very strong branding tactics that both for-profit and non-profits have used to great success.  One just has to look at the Susan G. Komen foundation to see an excellent example of how well this strategy can work.

This year the NMSS starting handing out orange shirts to all event participants who raised a minimum amount of money and asking the participants to do what they could to “Paint the Town Orange”.  Many participants took this as a challenge and everything from the orange shirts, pins, headbands, beads, bracelets, earrings, orange hair spray, to even completely dyed bright orange hair was seen.  It was such a wonderful and inspiring start to this new awareness campaign.  Move over Pink, Orange is on the scene!

Look around and see what you can do on a daily basis to help get MS the awareness and recognition it deserves.  See what you have around you that you could use to start getting people to ask questions, and please don’t be afraid or embarrassed to answer those questions! You have nothing to be ashamed of and until the general public is aware of what MS stands for and what Multiple Sclerosis is, we will always be fighting an uphill battle.

I am leaving you now with a ribbon of hope and in recognition of this new campaign from now all my posts will be in orange.  I hope you like the color as much as I do!!!

Next Steps; what a ride, oops walk, it’s been!

I don’t remember the day that I started team Next Steps but I sure do remember the day it came to its culmination, April 24th 2010. Now let’s not get ahead our selves though. There’s a lot to tell about the few months between those two dates.

Next Steps was initially just my husband, friend Kim, and I.  It was my heart child born of many years of knowing that I should be participating in events such as these, but turning my back out of ignorance, fear, and the discomfort I felt in asking people for money.  Looking at my children and thinking of their future  was enough for me to overcome these emotions and Next Steps, the child of my heart, was born.

We had a name, three members, and not a clue in the world where to go from there.  We set our fund-raising goals at the lowest possible except, being the captain, I took a leap of faith and upped mine to $500.  I’ve never fund raised before and I think had it not been for this new contraption which we call the internet I might not have been able to do it this time. Not many of my ex-coworkers, Ed’s coworkers, or our friends really knew much, if anything at all, about my diagnosis and current situation, so I sat down and wrote a letter.  I sent it out to all the people I knew whose email address I had handy and Ed did the same.

Then a miracle began to happen.  Within 5 minutes of sending out that letter I had at least $100 in donations, within 20 minutes  we had at least $300 in donations and that very first night I increased my goal for the first of many times.  Over the next few days the donations kept coming in, however I was also getting letters of sympathy, disbelief, others telling of a similar struggle, and some just simply thanking me for sharing.  It was an outpouring of money, support as people joined our team, and love that just a few days earlier I never would’ve even thought to dream of.

As the weeks went on, we were able to contact more people, and the money continued to come in, I was asked to be the Columbia Walk Ambassador.  I began to believe in the power team Next Steps could have, and I started to feel a bit like my old self for the first time in quite a while.  Our friends had so generously given, and continued to give, but I felt that it was now time to help ourselves a little by arranging some fund-raisers.  We had two fundraisers at Cheeburger Cheeburger, were the recipients of National Cheese Fondue Day (yes it really exists), held a two-day yard sale resulting in sales of over $2100, and an all-day fundraiser at Looney’s Pub, and to finish up a dinner fund-raiser at The Hazelwood Inn.   By the day of the walk, we were the highest earning team, and even though I had continued to raise my goal up to $6,000 with the team goal of $8,000 I had raised over $7000 and our team was over $12,000.  What a feat and a thrill!

This didn’t happen by itself, and it wasn’t done by me alone. In fact, it didn’t come so easily at all points along the way.We had a lot of help from many friends throughout the process, many who even gave up several days to us.  We had our life taken over for approx. two months by a yard sale that lasted for two days and ended up with me collapsing in exhaustion the minute Ed walked through the door from work the next day.  Every fund-raiser caused anxiety as we juggled the kids’ schedules and waited to see what the turnout would be.    There were slow periods when I wondered if we would meet our goal, days my legs felt weak which made me doubt whether I would even be able to participate, and as I was tottering on such an emotional tightrope  I would often find myself tumbling into the depression side of the gulf.  If things didn’t go perfectly, I would often look at myself as a failure, a problem I’ve dealt with for a large portion of my life.

The day of the walk was amazing!  It was full of energy and people wanting to help find a solution to the problem of MS, not to mention all the hair colored orange.  I gave a speech as the Walk Ambassador, and got to see my friends out in full support of both me and such a great cause .  I finished the walk and as a friend commented, was even able to talk the whole way.  The greatest victory of the day however, besides the incredible amount of funds and support raised for the fight against MS, was the moment my Mom finished the course, came up to me, gave me a huge hug with a big smile on her face and yelled “I did it!”

After all the ups and downs, would I do it again?  YES!  In fact we are still raising funds up to the May 31st deadline and then will just continue until the next May 31st. deadline.  Hopefully along the way our team will continue to grow and in love, support, and money raised.

Thank you so much to all of you out there who helped and supported us this year.  Team Next Steps now has its own page on Facebook.  Please feel free to stop by and leave a message or join to be kept up to date of our latest news and happenings!

The only thing I could ask for now, which would be another miracle, would be me somehow raising (my personal fund-raising page) $2191.19 by May 31st, 2010 so I could attend a meeting in Chicago of the top fund-raisers across the country to learn from them and pass that knowledge on to our members and total goal for next year.  We’ve already been granted one miracle though and I don’t want to be greedy.

Who is this girl in the mirror?

This morning is the first time that I had looked at my blog in quite awhile. You could have colored me orange when I realized that it had been more than two and a half months since I had last updated you.  I feel like I should introduce myself again and direct any newcomers to the short version of my story up till now.

When I last left you I had just signed up for an Instructor II class and had formed my first ever MS Walk team called Next Steps. I made the decision to sign up for the class in the beginning of January, during a refresher class I was attending to keep my certification as a paramedic. Shortly after  I decided to start the team Next Steps to participate in  MS Walk:Columbia 2010. The class would have given me the ability to teach a subject matter I really enjoyed and also bring in some extra money for the family. The Walk team was something I have been feeling that I should be doing for years.  I must have been in a very good place mentally for me to believe I could tackle both endeavors with my usual obsessive/compulsive need to totally involve my self in a project and be happy with nothing short of perfection.

On the way to the first class  I tripped and fell twice, talk about a confidence destroyer when you are depending on strength to get you through. I sat in class, only slightly bruised, and listened to all the requirements and projects that needed to be completed in the next six weeks and found myself feeling incredibly overwhelmed.  I drove home almost in tears.  For one of the first times in my life I was realizing that I just might not be able to do it all.  It was time to take a long look in the mirror and see who it was that was actually looking back at me.

The face that I saw was incredibly familiar, maybe a bit heavier, some who don’t mind their manners might say a little older, but otherwise there I was.  That is until I looked past the surface and into the hazel eyes that showed me my real reflection.  I was no longer the young, physically strong, single, independent, conquer the world, would take on anything, me that I still found myself often imagining that I was.  Instead I saw a middle-aged wife and mother of three, often housebound, who had a chronic disease, which whether I liked it or not, left me chronically tired, could shroud me in depression, take away my strength, and make me dependent whenever it so chose with no input from me.  However when I looked a little deeper there it was, a glimmer of my old self in a new form.  A self transplanted into a new situation  and a body with physical limitations, but a self that still dreamed of participating in live, raising intelligent and happy kids, helping those in need, and being a productive member of society.  That self was just going to have to fight a little harder and accept the new reality in which it existed including the limitations that came with it.

Three days later I withdrew from the Instructor II class.  When you can no longer, or should no longer, try to do it all one must decide were their priorities are.  I have a wonderful husband who already works himself to exhaustion every day to help me.  He had given me his blessing to take this class because, I believe, that he often feels desperate to find something that will make me happy, draw me out of my depression, allow me to feel connected to something, feel alive.  However this all comes at his, and the rest of the family’s, expense.  This class or I as an individual, was not going to, and never should, be something that leads to the collapse of the rest of the family.

I had already become very involved in team Next Steps and to be honest, at that point, that is where my passion laid.  It fulfilled all my needs to be alive, connected, a productive member of society, and I was helping myself and my family at the same time.  If I can only significantly involve myself in one thing at a time it’s going to take some time to get use to but it’s the new face in the mirror, the new me, and all things considered I really don’t have much to complain about.