Sunday, March 28, 2010

MS Fund Raising Walk 2010

Three weeks from today, Sunday, April 18, 2010, friends , family and myself will be taking part in the annual MS Fund Raising Walk. It can be a fun day. There is a party atmosphere, we walk along the boardwalk and the company is great.

But it is an event I would gladly pass up. Because it is an annual reminder of the fact that I have MS and that this incurable disease has devastated my life.

Of course I am not the only one afflicted with MS. The walk is also a sobering reminder that as bad as it is for me, there are others who are even sicker. I can still walk some distances, although I need either a cane or a walker. There are people I know with MS who have lost that ability, so to a certain extent I am lucky. I do need a wheelchair for any length of more than a block or two. I hate it, but at least it allows me to get places.

MS has stolen much from me. It has distorted my relationship with my children, who are often required to be caregivers rather than simply my kids. The same goes for my friends, who are wonderful and generous and solicitous, but I would rather be a plain old friend. It has taken away the ability to do anything spontaneously. I have to always worry, are there stairs, where is the bathroom, will there be someone to help me if I need it? I was just laid off from my job. How much of their decision had to do with the fact that despite being one of their top producers, I was a very expensive employee as far as health insurance goes. It was a self insured company. My health care costs run in the thousands every month. I am a liability to a small business. There are wonderful jobs out there that I am fully qualified for intellectually and professionally. But I can’t travel easily anymore. I can no longer maintain the pace I demanded for myself as a department head. So my hard earned career, which was going nowhere but up, is now in tatters.

I am in pain all the time, either from muscle spasms or from haywire nerves. So I tend to do things less and less. Running an errand is a project. It is a struggle to even get dressed.

The disease progresses incrementally. There is no predicting how far or how fast it will go. Statistics say most people with MS will have their life shortened ‘only’ by about seven years. When the time comes, how much will I want to have seven more years? Or will it be sooner? As immobile as I am, will I develop a pressure ulcer? I am on a powerful and dangerous medication to slow down the progression of the disease. Will I contract an infection that my immune suppressed body will not be able to fight? Will my next stumble and fall (for I am always stumbling and falling) be fatal?

Here is the thing: it is crucial to know the ‘me’ in the preceding paragraphs is EVERYONE with MS.

That is why the MS Walk is so important. The NJ Metro Chapter has an excellent rating as a charity. Almost 86% of the money they raise goes into programs for those of us with MS and into research to find a cure. There have been so many developments to treat MS in the past decade alone. That is thanks to fund raising for research.

Whether or not you live in the New Jersey area, I would love for you to be part of my team. You can be a Virtual Walker, collect donations and never have to set a foot anywhere. Or you can come join us on the Belmar boardwalk. Or you can make a donation to our team. I would be thrilled by any of those. This is the link to my team page:

And if all you can do is wish us well and keep us in your prayers, I am incredibly grateful for that as well.

Thank you to those of you who have already made donations and for your beautiful messages of support. I am astonished when someone calls me an inspiration or brave. I'm just me. But thank you for thinking and saying such lovely things.

Thanks to all of you for reading my blog. And thank you for anything you can do to support the MS Walk.

Please leave any comments about your own experiences with the walk or with MS. I would love to hear from you.



Barbara said...

When I get paid on Wed, I will virtually walk with you.

While I understand and empathize with all you're saying about yourself, you are a valuable person and everyone knows it. Try to take a more positive look at what you bring to people instead of what you feel you are taking away.

Because every day that you are here is worth everything to those you love and love you.


Abhinav Rastogi said...

really like the quote under "remember this everyday"... :)

Clueless said...

I am not working, but I will virtually walk with you. I watched a co-worker slowly decline as he discoved he had MS well into his career. Do to his declining cognition, emotional state and physical difficulties, he too had to quit working. It was really difficult to see him try to battle and be in denial of his symptoms and I don't blame him. I often wonder how he is doing now.

Lydia said...

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imelda said...

i can only offer my prayers as of now girl. i have had repeated home accidents lately. yes ur luckier than the rest. God loves you.

Have Myelin? said...

My local MS Chapter helped me quite a bit when I was in need of help so I can attest to the value of fundraising. I received one of their cooling vests and they help me get on Medicaid.

Lenox Knits said...

I just donated what I could. Almost 10 years ago my general doctor told me a combination of symptoms I was having was likely MS. I waited months for all the tests from the neurologist to determine that I did not have it. I remember how scared I felt with that diagnosis hanging over my head. I am so thankful that I had a much simpler result. I will keep you in my thoughts. I really do pray for a cure for MS more so because of my own scare.

Marie said...

Thank you all SO much for your comments and support!

I am so grateful to all of you for offering your thoughts and encouragement and especially for donations.

Barbara, thank you for your lovely words of hope. I am so touched by your warmth. :)

Abhinav: I'm glad you like that. I nee the reminder myself.

Clueless: It is an insidious disease, doing it's damage when we are usually at the peak or our careers or raising a family. And it affects all of those around us as well.

Lydia: Thanks so much for stopping by and for your kind words.

Imelda: I thank you for your prayers.

Have Myelin: Hi! Thanks for the tip. I am going to see if I can get them to redo my bathroom. lol Just kidding.

Lenox Knits: I can only imagine ho scared you were. I was in total denial until my diagnosis was confirmed. I thought it as preposterous, people like me didn't get MS. I am so glad it as a false alarm for you!!

Again, thank you all for reading and for your good wishes!!

Marie said...

lol As you may have noticed, my 'w' is sticking and I didn't proof read my comment. It is unintentionally amusing due to several missing w's.

Anonymous said...

The authoritative message :), cognitively...