Fall into these arms of mine
I'll catch you every time you fall
Go on and lose it all
Every doubt, every fear, every worry, every tear
I'm right here Baby fall
When I first heard Clay Walker sing those words, I cried. Clay's song "Fall" could have been all about me and my husband. It expressed how Pat has always been there for me with my MS. I still get choked up when I hear it.
That song was just one more reason Pat couldn't pass up the chance to bid on the acoustic guitar autographed by Clay Walker, someone else who understands all about living with MS. Clay wasn't able to attend the 2007 National MS Society Conference in Dallas, so he had donated the guitar for silent auction, and Pat wanted me to have it.
But how did we get to this conference? Well, it's a long story. Let me tell you about my journey with MS, how MS has helped to change my life in so many ways, and how the National MS Society has been a big part of that.
So where do I begin. I first felt something might be wrong in August of 2000 when I would bend my neck forward and get a tingling, pins and needles feeling running across my chest and shoulders going down both my arms. This found me visiting my primary care physician and being sent for a neck x-ray, which resulted in a neck MRI, which prompted a call from my doctor's office requesting an MRI of my head. Needless to say, that got me a little concerned. When the MRI results had come back on my neck they showed an abnormal lesion there which indicated that it could be one of three things: a tumor, inflammatory process of my spinal column, or MS. Great, was I supposed to pick the one I liked the best, how about none of the above!
As soon as MS was suggested I began checking on the Web and found my symptoms matched the description of Lhermitte's Phenomenon which can characterize MS. After almost blacking out at work a few days later I was again in their office only to have the nurse practitioner come in to give me the news. The MRI of my head showed more lesions, it was most likely MS. I felt overwhelmed and so small; I cried.
The tears came again when I got home. Then I pulled myself together and thought this is silly, crying isn't going to help. So I spoke four simple words offered up in prayer, "Thy will be done." I was filled with a sense of peace as I called my boyfriend, now husband, at the fire station and gave him the news. He immediately told me that whatever it takes, "we" would get through this that he would always be there for me. And he has been. As Pat always tells me, you don't have MS, "we" have MS.
Through the appointments and tests with the neurologist, through the lumbar puncture nightmare that required two additional trips to the emergency room for them to perform blood patches when the puncture wouldn't close, through all of this and more Pat has been there with me every step of the way. He is my hero.
When my diagnosis was confirmed on Friday, October 13, 2000, you would think that would have proven to me that Friday the 13ths are unlucky. But I was born on a 13th and have always felt an affinity with those special Fridays. So even though that was when my diagnosis of MS was confirmed, it was still a lucky day for me. I'll explain.
At the time of my diagnosis I was in the 21st year of my career with the City of Tacoma, Washington as an Administrative Assistant in their Retirement Office. Since I had started with the City at a very (very) young age, I needed 30 years to qualify for full retirement benefits. Something I had certainly planned on doing.
Unfortunately as many of you know, MS follows its own path and what I didn't know was that it was going to start throwing the following obstacles my way: balance problems that literally had me bouncing off the walls, vertigo making me so nauseous and dizzy that I couldn't make it through the day, loss of muscle coordination so that I began dropping things or tripping over lint on the floor, constant pain in my legs, and fatigue that would roll over me like a wave.
Worst of all though, for me were (and are) the cognitive problems. Making mistakes so that my co-workers had to not only do their work, they also had to check mine. Well that couldn't go on. And it didn't. Nine months after diagnosis, my career WAS over.
Fortunately, due to the generosity of two retiring firefighters I was able to stay on paid leave until finally retiring April 1, 2003. Even though I had been on leave for a long time, retiring was still so FINAL.
"What do you do?" can be a painful question when posed to someone forced to give up a successful career because of MS, especially if you have no visible signs of illness. I faced a crisis of self-worth after retiring from my job. I had often defined who I was by my profession and role as a working woman. When I was forced to retire at 48, I worried constantly about my place in society as well as the financial burden I felt I was placing on myself and my boyfriend.
For many of you reading this I'm sure that work is a major part of your life and your identity. You're the vice-president of a bank, a department director, or an employee they just can't do without. HOW WOULD YOU FEEL IF SUDDENLY THAT WAS TAKEN AWAY? That happens every day to people with MS. I was lucky though; I was able to redefine what "self" meant and found a sense of pride through volunteering and hopefully making a difference in the lives of others living with MS.
How is that possible? For me it was simple, the National MS Society. A friend of mine, Roz Hewsenian, knew all about the National MS Society. She was a consultant for our retirement system living in California who had a college roommate with MS. When my diagnosis was confirmed she was one of the first people I told. She insisted on me seeing a top doctor in the field and would fly me wherever I needed to go. After contacting the NMSS Home Office she sheepishly called and asked me if I could manage the trip to Seattle, 30 miles away. One of the top neurologists in MS was right in my own backyard. He's my doctor now and I thank every day for Dr. Jim Bowen and his nurse practitioner Bobbie Severson.
Because of my friendship with Roz and her knowledge of the Society, the first place I checked out was the National MS Society website and started reading. I wanted to know anything and everything I could about what I was up against. Their "Knowledge is Power" series began arriving shortly in my mailbox. It was just the first item to go into my extensive library on MS. From the very beginning with their referral of Dr. Bowen and "Knowledge is Power," the National MS Society has been there for me. I'm still trying to repay them for all they do for me. I don't know if I ever will.
My involvement with the NMSS Greater Washington Chapter began with the Tacoma MS Walk just 6 months after being diagnosed. At the time I thought I was handling everything well considering I had just been told that I had an incurable, debilitating disease. Boy was I wrong!
The day of the walk, Pat and I showed up at beautiful Pt. Defiance Park in Tacoma ready to take part in the event. It was an unusually sunny April day and that wasn't the only thing I would find surprising. I had no idea there would be so many people there. All those people walking to find a cure for MS. All those people walking for me! I started to cry and Pat just held me close. Since that first walk in 2001 we've done the Tacoma Walk every year. Two years later I joined the Tacoma Walk Committee. But that wasn't enough. I wanted to do more. In 2004 Team OptiMStic was formed, we had just 4 members but we raised $5,766! Our friends and family team has grown to over 24 members now and since that first walk in 2001 we've raised $51,148 for the National MS Society.
At the same time that I joined the Walk Committee I decided that I wanted to do more, it still wasn't enough. There was a volunteer position that sounded very intriguing so I asked some of the development staff at the Chapter what they thought. They gave me thumbs up and I became an MS Ambassador. This gives me the opportunity to speak at corporate lunches, team captain rallies, programs and in-services; attend health fairs and help host chapter events. I get to speak about my life with MS, something I have been open about since I was first diagnosed. Of course if you had told me when I was still working that I would be comfortable speaking in front of hundreds of people I would have said you were insane! But now it's really easy; guess it helps when you're passionate about the subject matter. I love talking to people about MS and if I provide just one person with a bit of comfort or information, it's all worthwhile.
Locally for the Greater Washington Chapter I'm an MS Ambassador; co-chaired the inaugural Tacoma MS Luncheon in 2005; Self-Help Group Leader; Self-Help Group Leader teletraining facilitator; event volunteer/committee member; member of the Government Relations Committee, chapter volunteer; and captain of Team OptiMStic. Nationally for the Client Programs Department I also do Self-Help Group Leader teletraining; am a member of the NMSS Self-Help Group Task Force; the Relationship Matters Oversight Team, the MS Learn On-line Task Force, and most importantly (and proudly) represent people living with MS on their National Programs Advisory Council.
For all the knowledge, support, and friendship that the Society has given me, I will be paying them back for the rest of my life. I can never do enough for them.
One of the things that I truly love doing each year is being a presenter at their National Conference, something I've been lucky enough to do since 2003. Ironically my first introduction to Clay was at the Society's 2004 National Conference in Denver when he was named National MS Ambassador for his service to the MS movement. One of my dear friends Rachael Nuwash and I were even lucky enough to have our picture taken with Clay.
The next year in Atlanta, Clay was back with his band doing a private concert for the conference attendees. He and his band were fantastic and so generous to do that concert for us, even signing the picture that had been taken the year before which proudly hangs on my office wall. Well, I was totally a FAM, as Clay says. Since then a Clay Walker album is always playing on the iPod or in the car CD player. In fact, just a few months before that fateful conference in Texas Pat and I drove 7 hours roundtrip to see Clay and his band perform in Lynden, Washington (near the Canadian border). It was one of those great venues, a county fair with the stage outdoors on a warm August night. What could have been better?
Well, better happened in Dallas at the silent auction. Pat made an opening bid of $1,500, figuring Clay's guitar should get at least that much. Each time someone bid against him, Pat bid back. During dinner, he kept checking to make sure he was still ahead. As the last seconds of the auction ticked down he placed the final winning bid, $3,100, all going to the National MS Society!
Everyone from our Chapter cheered when they announced he got the guitar. I was beaming! To me it was just one more wonderful thing that Pat has done for me.
You see, Pat and I were married after I was diagnosed with MS. When Pat said the words "in sickness and in health" at our wedding, I cried, because he really meant it. He shows me this every day. Pat goes with me to my doctor's appointments, gives me daily shots of Copaxone, and is my physical and emotional support when I need someone to lean on, just like in the song.
When I tell people that getting MS has been a blessing in my life I'm sure that some will never understand. But it's true; MS has given me the opportunity to appreciate everything about life. I treasure Pat and my family who are always there for me; the friends I have made, many of them also living with MS; the chance to make my life a vibrant and fulfilling one, and to talk to people about MS, something I am so passionate about. Now when someone asks, "what do you do," I answer proudly, "I work to move us towards a world free of MS." I do that by being an MS Ambassador and attempting to pay back the National MS Society for always being there for me when I have needed them. I'll probably never be able to pay them back but until I do I'll have a wonderful time trying.
And most importantly, every time I look at Clay's guitar I'll always have a beautiful reminder of how much Pat is there for me, just in case I fall.