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Monday, December 21, 2009

Online Charitable Contests REMASH: Dear Beth K.

This post is in response to the Chase Community Giving Contest controversy and the many blog posts and articles that have ensued. This post is an open-letter response to Beth Kanters blog post linked below.

Dear Beth Kanter:


Thank you for all the time and thoughtful effort you put into your research re: cause marketing. Your depth of knowledge and dedication are amazing. Your hard work and passsion are an inspiration to many more people than you could possibly imagine. As I posted yesterday on Facebook, I think that we all (corporations, non-profits and individuals) are on a learning curve here and much can (and hopefully will) be learned from the Chase missteps.

And to All the Naysayers:

There ARE many non-profits that will happily continue to participate in any way, shape or form to increase their chances of funding. Especially smaller ones like the Ehlers Danlos Syndrome Network Cares that is one of the 100 finalists in the CHASE contest
I am speaking from experience as a volunteer for the

National Marfan Foundation and believe me when I say that this is not a popularity contest to all of us who work tirelessly to promote awareness of all connective tissue disorders and chronic diseases. It is probably a safe bet to say you don’t know much about EDS. Do you know what Marfan syndrome is? Would there be much chance that you would hear about these organizations if those of us working so hard and trying to compete with more well named and recognizable charitable organizations for very competitive donation dollars were to choose not to participate?

A Mission and Vision
I am in the process of building a Non-Profit Organization to Fund Post Secondary Education for Young Adults who have chronic medical conditions such as EDS and Marfans syndrome and those who have survived catastrophic illness as children or teens. Many of these young adults have the tremendous talent, passionate desire and strong will to contribute (and do not want to go the route of SSDI/Medicare). However, in many cases, their chronic illness does not allow them to physically attend and complete a “traditional” university education on a full time basis. Nor do their parents have the financial resources to support extending their educational funding beyond the typical college student to the 7 to 8 years that would be the minimum necessary for them to complete a degree program. Especially since these families have been straddled with health care costs that supersede college investment plans. Even with “good insurance coverage”, between co-pays, coverage limitations, prescription medications and non-covered services many families struggle to keep current on their everyday bills. Again I speak from experience. And to compound matters, if these young adults do not attend college full time, they can no longer be covered on their parent’s health insurance and are “uninsurable due to pre-existing conditions” or “insurable, but with prohibitive premiums”. While this health care dilemma is a separate issue that myself and many other “full time volunteers” have been working on also, it is peripheral to the topic today so I will not digress further. My point is simply: these individuals want the opportunity to learn, contribute and pay their own way. With very few exceptions, the only way they will be able to do so is with assistance that is not available to them currently.

And Back to the Main Topic for Today

And therein lies the beauty and hope inherent with these Online Contest programs. Yes, I was a business major so I know all about the “marketing sense” that motivates companies to take this route. Yes, I can be as cynical as the next person if I choose to when considering the bottom line mentality of large corporations. Challenge their motivation all you want. But I challenge you to walk a day with me. See the hope that each new lead can bring to those who volunteer at the grass roots level, on a daily basis with just a slight opportunity for 1) the possibility of any funding 2) increasing awareness of their cause 3) networking

And to Beth
Who I quote “Do these contests really have impact? Do they really help nonprofits or distract from their work? Or is this just marketing?”
1) Yes, these contests really have an impact.
2) Yes indeed, they CAN help nonprofits, especially through funding. And any distraction factor to their paid workers is outweighed by the potential for a tremendous amount of increased CAUSE awareness and other intangibles (and in the case of EDS Network Cares and the National Marfan Foundation—most of the soliciting and networking for votes is done by unpaid but extremely effective and passionate volunteers).
3) Marketing yes, “just marketing" no. Call me a Pollyanna but I choose to see the good in everything and leave the cynicism to others for now. I have too much work to do to approach this any other way. Gullible? I don’t think so. Hopeful, hell yes. Motivated and driven, you bet. I and many more like me have too much work to do and too many things to accomplish to choose to be any other way.
Stephanie Parkinson
I urge you -- please leave a comment. As a neophyte blogger with much to contribute, your support and comments are greatly appreciated.
I may be disabled, but I have a voice and a computer, passion, focus and drive so Open Mouth/Insert Topic.

Saturday, October 31, 2009

A Tale of Two Cookies

This is a story of two cookies. One cookie lives in Los Angeles. He is quite large at over 12 inches in diameter and decorated in frosting depicting the finest of Halloween. He is a proud cookie. As he looks around in the bakery section he sees no finer cookie. He is sure he will be bought and taken to someone's home and be a much appreciated tasty holiday pleasure.

The other cookie is from New York. He is a small cookie. This small cookie sits atop a mound of other small cookies of varying shapes that have all been similarly decorated to celebrate Halloween. The small cookie is no where near as grandiose as the large cookie but he also feels that decked out in his pumpkin finery, he and his plate-mates will also bring holiday pleasure to some family soon.

As unlikely as it seems and although they come from different coasts, both of these cookies are destined for the same family in Illinois. This family in Illinois has been having some difficulties of late so a relative from each side of their family decides to purchase them a special holiday treat and mail it to them. Both purchase their favorite treats and put them in a USPS Priority shipping box.

One day before Halloween, both surprise treats arrive at their destination
in Illinois: The proud Mega-sized decorated Cookie and the plate full of small but wonderfully decorated cookies.

But alas, upon opening the treats it is obvious that something had gone awry.
The proud large finely decorated cookie arrived at it's new home shattered. It was a crumbly mess of has-been frosting decor and small pieces of cookie that had been battered and beaten much like sea glass when it spends a decade in the ocean.

On the other hand, the small cookie perched atop the tray of other finely decorated treats arrived in perfect condition. Small but proud he sat high on the pile and accepted the oohs and aahs of pleasure at his arrival. He knew he would be a welcome holiday treat in his new home!

The difference?? Although shipped in the same box, via the same USPS:

The tray of small cookies had been thoughtfully surrounded with small Styrofoam peanuts, while the large cookie had not.

Now the moral of this story could very well be that a little bit of thought goes a long way when shipping a fragile item. HOWEVER, this is not a story about the foibles of shipping. (I think you could find many of those on EBAY if you wish!)

This is a story about thoughtful gifts to others who are having a bit of a rough time. The thankfulness and the genuine pleasure at the surprise and kindness it bespeaks. And the gratitude that our Illinois family feels for all the love and support.

Oh, and the crumbled cookie? It still tastes pretty good---especially when you put some in a bowl and cover it with milk and eat it like a bowl of chocolate chip cereal! Happy Halloween!

Thanks Aunt Lynn

Thanks Aunt Monika

Optimism, Schizophrenia or Survival Skill?
This post was written on September 29th.

Everyday I post on Facebook, TWITTER, NMFConnect and answer countless emails. Since a goodly percentage of my contacts are either aware of my (and/or my son's) chronic illness, have their own chronic illness, or are a family member of someone with a chronic illness I receive many questions along the line of "how are you doing today?" or "how are you really feeling?". So here is the deal---when I write a status post on any of the aforementioned sites, I am telling the truth, always. So where is the problem? Well, while posting this weekend I came to the realization that since I subscribe to the philosophy of "positive thoughts, speak and action" --what I fondly refer to as ALOTBSOL (credit Monty Python--Always Look on the Bright Side of Life) that the result has been a development of a duplicitous existence--at least on the web. "Public persona" vs "personal/private persona" as it were.

The complete irony of this will not be lost on certain members of my family and very close friends who know that I grew up in a family culture that due to alcohol, ignorance and bad choices, was completely ruled by this duplicitous lifestyle. Most who knew my father, would always say what a sweet, funny, good man he was. And he public. His "private persona" however, was much different---What most people (including all but immediate family) did not see was the angry, mean, abusive man that he was in "private". The man that actually showed glee at behavior that humiliated and demeaned. The type of behavior that should have been disavowed and prohibited by any decent husband or father.

This dual manifestation has unfortunately been his legacy to one of my brothers who continues to perpetrate the same split personality which allows him to present a public persona of decency--a model citizen, teacher, father, and until recently, loving husband. While privately, he is abusive, controlling, demeaning, spiteful and wraps it all up in a huge ribbon of rage fueled by a skewed sense of entitlement. And yes, he too is an alcoholic, however, his abusive, controlling, meanness, irrational entitlement and bursts of unprovoked rage manifested themselves at a much earlier age----way before alcohol became his best and most loyal friend.

However, I digress. This was not meant to be a bearing of the soul of my dysfunctional childhood and family. However, there is a parallel at play here, but it is a much more kinder, gentler duplicitous existence of which I have chosen to live out. As a person with a condition that causes chronic pain and fatigue I have two distinct and very real existences at play ever day. For example:

Today on my Facebook status I wrote:

Cooking up a storm this weekend in prep for Brad's surgery. Stocking the freezer with meatloaf, chicken enchiladas, meatballs and sausage. Started Friday night, and of course, in the midst of all the cooking, the kitchen sink starts leaking. Good thing we have a neighbor who is also a plumber!

Well, this is all true. Every word, every meatball! LOL. Makes me sound like a normal (albeit Type A) wife and mother spending her weekend in preparation for her spouses' surgery. However, how I really feel this weekend is: absolutely worn out, exhausted-like I am clinging on by my fingernails. Every part of my body hurts, my feet, my legs and hips, my wrists (which makes all the cooking so pleasant!!), my back, and especially my neck. In between the chicken and meatloaf yesterday I had to lie down. I did take a two hour nap--it was the only time yesterday that I was pain free: while I was sleeping.

The reality of our situation is that Brad is our healthiest family member. And he will be needing the most care over the next several weeks.. I will gladly step up and care for him, as he does for me--always. We do not have family near us, nor do we have the kind of support network here that would step in and help the way family would. That is nothing new to us, we have been through so much these past few years and have managed pretty much on our own. We have received the occasional meal from those who live near us who we consider good friends, and we are so thankful and appreciative. However, the point being, we have to do this ourselves, we know that, and we do, with ALOTBSOL and adrenaline. I CHOOSE to post positive comments and updates. I do not want to ever become the person who lets the pain and fatigue over-take her spirit. Although there are times where I am just so spent and see no relief ahead---and that CAN be discouraging. If it wasn't, there would be something seriously wrong with me. These next few weeks will not be pretty. They will be challenging. They will test my physical ability to 'keep up" in many ways. I will dig deep and find whatever reserves are hiding in the deep recesses--somewhere.

So there you are---my upbringing in a duplicitous environment has trained me well. I can feel like I've been hit by a truck and still project a positive, supportive, hopefully humorous persona. And while I profess that this is a conscious "choice" on my part--I choose to be positive. Maybe, upon examination it is actually more than that.

Sunday, September 6, 2009

30 Things About My Invisible Illness You May Not Know
by Stephanie Parkinson

1. The illnesses I live with are: Systemic Lupus Erythematosus (Lupus) and Fibromyalgia
2. I was diagnosed with them in the years: 1990-Lupus, 2002-Fibro
3. But I had symptoms since: 1989
4. The biggest adjustment I’ve had to make is: Giving up so MANY activities I love. Having to make either/or activity choices everyday single day.
5. Most people assume: That I am much healthier than I actually am, and that both of these conditions are treatable to the extent that allows for a "normal" daily lifestyle; that, because I CHOOSE to be upbeat and positive on a daily basis, I feel well.
6. The hardest part about mornings: When I first wake up, I try to go right back to sleep because it is the only time I do not feel pain. As I gradually awaken, the neurons in my brain start to receive the pain messages from throughout my body. During these first few moments, I assess the level of pain I will be starting this particular day with.
7. My favorite medical TV show is: Nurse Jackie--"it's a hoot!" and provides much comic relief.
8. A gadget I couldn’t live without is: My laptop. It is my link to the world--my main means of communication.
9. The hardest part about nights are: Falling asleep when I have taken the absolute maximum dosage for pain relief and I am still in incredible pain. And while I am awake and in pain, feeling such a sense of loss for things I cannot do, people I can not visit, feeling inadequate as a wife, mother, friend, sister-in-law, aunt, niece, cousin because there is so much more I would love to be able to do and can not.
10. Each day I take: 13 - 18 pills & vitamins. (No comments, please)
11. Regarding alternative treatments: I have been there, done that. Still don't rule out anything. What is most effective for me is massage therapy but since it is not covered by insurance, I am rarely able to seek treatment.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. I know it is vanity but getting "cleaned up and dressed up" sometimes makes me feel good. And there are times when I am meeting new people or seeing "casual/business" acquaintances that I prefer not having my disability obvious.
13. Regarding work and employment: Miss it, wish I could pursue some of my career dreams--sometimes desperately. As an alternative, I volunteer. I give the best of my talents, education, and experience from my "previous life." I know absolutely and exactly what my strengths are and the areas of ANY volunteer organization where I can excel and make the most immediate and productive contribution. Because of my limitations, I know how to generate a great deal of organizational excellence with a high level of efficiency. As a person with a disability, I take a tremendous sense of pride in my volunteer work.
14. People would be surprised to know: The level of pain I am in. Daily, constantly, and unrelenting. And that all the medications available for my conditions only suppress the pain, never relieves it completely.
15. The hardest thing to accept about my new reality has been: Never being able to live a "fuller life". Giving up so many things, everyday, even minor things that I have to surrender.
16. Something I never thought I could do with my illness that I did was: Start a volunteer organization from ground up and after two years "graduate" to a different phase of life leaving behind a vibrant, highly organized, well trained, efficient and very effective organization that has gone on to grow and thrive.
17. The commercials about my illness: Are benign at best and mislead people to believe that there is a treatment much more effective than what is truly available.
18. Some things I really miss doing since I was diagnosed: Golf, volleyball, weekend getaways, art shows/fairs, jewelry design and other art projects.
19. It was really hard to have to give up: Golf and just basic walking/getting around.
20. A new hobby I have taken up since my diagnosis is: Volunteer Leadership and online support. Collecting Vintage jewelry.
21. If I could have one day of feeling normal again I would: Just keep moving! everywhere, doing everything with lots of walking, shopping, lunch out (of course, all of this done in the company of those I love). And end the day by hosting a huge indoor/outdoor dinner party ending with a poker game that would run way into the wee hours....mudslides included!
22. My illness has taught me: To embrace "where you are" in your life, accept the changes, make the most of what you CAN do.
23. Want to know a secret? Things people say that get under my skin:
Most Platitudes. For example: "God only gives you as much as you can handle"(give me a break--God is not sitting there doling out misery and challenges on an individual basis and keeping track! AND please do not assume that I CAN handle everything I am facing--walk in my shoes for awhile and see how YOU feel about that). or "There are so many people in the world who have it worse than you do" (you think I don't realize that! but what makes you think that their degree of suffering is supposed to make me feel better?). I actually could go on and on with with this question but won't! LOL. This will probably be a future Blog topic!
24. But I love it when people: Acknowledge that my life really does suck and that I/we have had an extraordinary amount of bad luck, challenges, tragedy, loss and pain---more than most people have in their lifetime. I love it when people say "It really does suck to be you!" because it is SO VERY TRUE and I laugh every time I hear this. And I do not hear this often enough.
25. My favorite motto, scripture, quote that gets me through tough times is:
"Sometimes the universe provides you an opportunity to make a change that you might not make otherwise" AND (from my beloved mother-in-law Alice,) "when things get really bad--that's when you have to be especially nice to each other"--I love that--we live that!
26. When someone is diagnosed I’d like to tell them: Well first of all "That Sucks" then...Take a deep breath, don't panic. Yes, your life is going to change, maybe a little, maybe a lot. With these illnesses symptoms vary quite a bit from person to person--- and they can ebb and flow. There are many wonderful people living with this condition who will be glad to share their experiences with you. If you have ANY questions at all, just ask, if I don't have the answer, I can point you in the right direction to get your answer.
27. Something that has surprised me about living with an illness is: The gratitude I felt after I acknowledged my inability to work and "keep up". I looked at the glass half full and thanked God for being able to spend more time with my family and realizing that even if I could not go-go-g0, I could still grow, contribute, learn, teach and most importantly Laugh and Love.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Make a meal and drop it off for my family. It was enough to last two days and it provided such a welcome and much needed break for my husband, who bears the brunt of household duties including meal planning and preparation.
29. I’m involved with Invisible Illness Week because: We need to increase awareness. Big Time. Recently, someone I love, had a very disturbing incident while parked in a handicap space (with placard prominently displayed). He was verbally assaulted, his access to leave was blocked and he was afraid he might be physically assaulted. All because he has an invisible disability and was dealing with an ignorant person.
30. The fact that you read this list makes me feel: Like I am increasing awareness on many levels. Less invisible, more understood and productive. If one person gains insight and compassion after reading this, I will have succeeded.

Friday, September 4, 2009

Too many People, Places and Things

There has been a mushroom effect in my life as of late---yes, this is a GOOD thing. As a result I have started this blog in an attempt to gather all the wonderful people (family, friends and frienemies), places (online and on land), and things (causes, objects d'art, miscellany) here. Hopefully this will help relieve some of the everyday frantic switching from FB, aol, NMFConnect, Twitter, ---catch my drift? Honestly, I do not know if this will work. It may help a little, it may help a lot, or it could backfire and add one more place I need to maintain. And I do not have any idea how long it will take until this space reflects at least a basic "shell" of information that I envision. But I hope, more than anything, that this space will inform. The life path that has been laid in front of me as of late, although curvy, winding and muddy, has proven to harbor a treasure trove of wonderful people and web sites who are embracing "life" "living" and "giving" in a way that is both powerful and inspiring. Hopefully, while I am attempting to streamline the many "communication mediums" that threaten to spiral me into a chaotic and a frantic existence, you will meet some of these people, places and things....may they touch and inspire you, the way they have touched and inspired me.