Wednesday, May 26, 2010

WORLD MS DAY


In a rare second post of the day (see my post below this one which, coincidentally, can serve as a companion piece to this post), I just found out that today is 'World MS Day' -- how this fact escaped my attention is beyond me. Unlike other illnesses and afflictions that get their own months and much more recognition (not that they aren't deserving of such, so, please don't misunderstand me) Multiple Sclerosis isn't one of them. I'm hoping to help change that.

I am proud to be an activist and fundraiser for MS and encourage all who read this blog to get proactive.

This is something I've been involved with for about three years or so now after having met someone whom MS has robbed of everything but his spirit.

Through my journey in the MS cause I have learned that there is only so much we have control over -- while there are medications that can slow down the progression of MS, there is no cure. While MS can sometimes (but not always) take away our cognition, memory, dexterity, use of legs and limbs -- it cannot rob one of their will and sheer inner strength. I have met so many people who live the day to day fight against this affliction that it inspires me to thrive in my own life.

It would indeed be an unnecessary serving of injustice were I -- or anyone -- to do otherwise.

I fundraise for the MS Walk in my area and volunteer on the day of the Walk at the MS Walk site. I also attempt to get local businesses involved by donating gift cards and such for the raffles at the Walks where 100% of the proceeds go to fund research for a cause and cure for MS.

There is much still to be done and much you can do also.....

Through my involvement, I have been very blessed to get to know the staff members of my local National Multiple Sclerosis Society (NMSS) chapter where I see first hand their hard work, humility, dedication and integrity. They have invited me to work at the camps they hold once a year in Crestline, CA. where people with MS get to enjoy a mountain getaway (thank you, "Till and Jodd"!) complete with talent shows, crafts, swimming, workshops, yoga, meditation, food, lodging, etc. -- it's all inclusive and they even provide scholarships to those who cannot afford to attend.

I encourage you to visit www.nmss.org to find out more about MS and what you can do.

The MS walk season may be over, but as I've said before, fundraising and awareness for MS never is.

FOR THOSE OF YOU WHO DON'T KNOW MY STORY, FOLLOWING IS HOW I GOT INVOLVED AND WHY I DO WHAT I DO:

I became -- and stayed -- involved with the MS cause in October of 2007 when I was working in an assisted living community.

Mid October of that year, a fifty one year old resident moved in. Curiosity got the best of all of us working there wondering why someone easily 30 years younger than the other residents was moving in.

One male resident, in his eighties, very matter of fact told me one day that when he moved in at the A.L. community, that he knew it would be the last place he would live in his lifetime. Many of the residents had simply come to accept that they come there to die.

This stuck with me.

I was then told by a higher up that this fifty one year old new resident has MS. I also learned that a few years before, his wife of thirteen years had left him when his MS became too much to handle and she was off to 'greener pastures'.

I later learned through him that she is now married to the man she left him for who could provide her with the lifestyle to which she had become accustomed being married to this new resident when he had a substantial income and was able to earn more than a good living before his MS progressed to the point where he simply couldn't anymore.

His name is Scott -- and he and I became fast friends.

Scott opened up to me telling me that one day his wife simply got up one morning and announced; "We're getting a divorce." He asked her if they can please discuss this and if there's anything he can do to make things better, and she simply repeated her sentiment of getting divorced with no explanation.

They had no children.

Scott was diagnosed with MS in 1989 when he was 33 years old and newly engaged. He then told his fiancee` of his diagnosis and explained to her that he doesn't yet know what this will mean for their future (remember, this was well before the age of the information era known as the 'World Wide Web') and that he would understand if she would rather not go through with their life together. In essence, he gave her an 'out' in which she then chose to stay by his side and proceeded to take the vows of: 'For better for worse, in sickness and in health'.

Thirteen years later, she had forgotten those vows.

Having had to retire early from his position as a Hospital Administrator (for which he worked very hard for in the eighties and nineties after years of schooling and getting his masters degree), Scott was now left with little choice but to call his parents who lived here in Riverside and asked if he can come home.

His parents, a retired doctor and nurse, made their home wheelchair accessible for Scott lives his life in a power chair unable to walk due to the progression of 'Secondary Progressive MS'.

His mother was riddled with cancer and died shortly thereafter. His father then died a few years later from heart disease, leaving Scott's older siblings with no choices of their own now but to place him in assisted living, with Scott's blessing and clear understanding, of course.

Scott shared with me a letter his Dad wrote to him a few years before his death where he stated to Scott that as a doctor who practiced medicine and healed patients for over fifty years, his one heartbreak and regret was that he was unable to heal his own son.

Scott is simply unable to care for himself without the need of caregivers and neither his older brother nor his older sister had the capabilities in their home and busy, working lives to care for him the way he needs.

They provide him with everything he needs in his new home there, visit him frequently (even though his brother lives about eight hours north of here and his sister about two hours south) and pay for his VERY high cost to live there to have the 24 hour care he needs.

Scott needs the use of a hoyer lift and caregivers to get him out of bed, into the shower every morning, on the toilet, dressed and into his power chair. He cannot simply get up and do these things on his own, if he needs to use the restroom, he has to push a button and wait for a caregiver to come in and lift him out of his chair via hoyer lift and back in again.

He once told me that he doesn't find this to be demoralizing to him nor undignified. Before moving into assisted living he told me that he would attempt these things for himself at home, but then said: "There was nothing dignified about me lying on the floor in the bathroom, unable to get myself up and back in my chair."

I got it.

From there I became proactive and participated in my first MS Walk, raising funds for a cause and cure for MS.

As of now, this is what we know:

*There is no cure for MS

*The only known cause -- which is not exclusive -- is that it is genetic (not hereditary, but genetic). This was just discovered about a year and a half ago through research but there are still many theories that have yet to be tethered down

*More than fifty percent of women than men get MS

*Each research project takes anywhere from three to five years and costs hundreds of thousands to millions of dollars each

This is why I do what I do.

Symptoms:

*Loss of gait/balance

*Decreasing dexterity

*Tingling and numbing in limbs, hands, feet and fingers

*Double vision/eye sight worsening

*Memory loss/lack of focus and concentration

These are just a few of the symptoms for MS -- there are no two cases alike.

Since befriending Scott and joining the cause of MS, I have since made many new friends through the MS Society in my area. I just got back this past Sunday from my third consecutive year as a camp counselor/caregiver at the MS camp that the MS Society holds for one week in May up in Crestline, CA. at a camp for the disabled called 'Camp Paivika'.

I'm supposed to lift their spirits but find more often than not that it is the other way around. It is the most enlightening thing I have ever had the pleasure to be a part of.

I also embarked in April my third year of the MS Walk in Scott's name and honor.

I've been blessed enough to raise over $10,000 the past three Walk seasons -- but this year fundraising has been more like a slow crawl with the economy being what it is.

When I send out my fundraising E-mail's every Walk season with the link to my MS Walk page, I just simply ask that people give what they're able to -- I would never ask, nor expect, anyone to put themselves in financial dire straits. I explain that if everyone gave just five, ten or twenty dollars, we would more than exceed our goal.

I also understand that many don't have that to give -- I know there have been times when I sure wasn't able to.

With that said, if you're able to give, kindly allow me to say that I have seen first hand what the MS Society does and, therefore, I can and do support and get behind them wholeheartedly because I know where the donations go and what good is done with every dollar.

Below is how you can help if you're so inclined and able to. I tell the people I solicit from that I as well as anyone understand if they're not able to contribute -- again, I would never expect anyone to go beyond their means, only to do what they're able, if they're able.

Following is how you can help. If anyone has any questions or problems navigating the site getting to my MS Walk page, or would perhaps like to donate via a check as opposed to on-line -- please contact me at ejcbtheshamrock4@aol.com and please be sure to identify yourself in the subject box so as your E-mail inquiry doesn't get confused with spam and accidentally deleted. I can also send you the direct link to my page via E-mail if you'd prefer but the following should get you there also.

I hope Scott's story has touched your heart as it did mine. Thank you.

"Blessed are those who give without remembering. And blessed are those who take without forgetting."
~Bernard Meltzer


To make an on-line donation:

1) Go to www.walkmssocal.org

2) Click 'Donate/Pledge' on the left hand side in the green column

3) Then click 'Donate' on the next page

4) From there click 'Search For Participant' and type in my name: Jo Anna O'Hara

5) You should then be led to my participant page where you follow the directions to donate--this is a secure site.

*You may have to search by my Walk date/location which is: The Quake Stadium in Rancho Cucamonga -- Inland Empire -- on April 17th, 2010 and then follow the instructions above.

Many thanks, appreciation and a continued blessed 2010.

Peace and serenity,
~Jo
"You desire to know the art of living, my friend? It is contained in one phrase: make use of suffering."
~Henri-Frédéric Amiel
Swiss poet and philosopher

6 comments:

Steven Anthony said...

You are one of my heros...I love how big your heart is, always room for one more. Thank you for fighting and bringing this fight to our attention.

big hugs my friend

EcceTodd said...

Great stuff Jo! You are an inspiraton to us all. Keep it up.

-Jodd
www.eccetodd.com

EcceTodd said...
This comment has been removed by a blog administrator.
Pam said...

Hey Jo....you have such a generous spirit! I am glad that we met several years ago while volunteering for an MS walk planning committee....I placed you on my angel list after hearing Scott's story...I look forward to sharing many years of friendship and fund raising...
Much Love, Pam

CHERI said...

Thank you SO much for visiting my blog today. Please come back anytime. And thank you for your lovely post on MS...I have a friend who has it, too. It's such a sad, sad disease.

Brooklyn Book Lover said...

You are an amazing person and an inspiration to us all. With all the stuff you had going on in your own life you still managed to dedicate yourself to others. The people in your life are blessed to have you.