Saturday, July 24, 2010

Approaching Rope’s End at Warp Speed

I didn’t expect to be writing another post today, but this just begged to be told.

Reaching into my medicine cabinet for toothpaste, I brushed against a small porcelain cup. It fell out of the cabinet into the sink and I flinched waiting for it to shatter.

But it didn’t. Instead THE SINK BROKE!!!

How does a sink break?!?! Who even knew a sink COULD break?!?! Oh, but that’s right, it’s MY sink. ha ha ha ha ha So of course it broke. Of course a $2 cup didn’t break! No, it had to be AN ENTIRE FREAKING BATHROOM SINK!!

Tiny little cup:

Big strong sink:

I'm so over the edge, this was my first reaction:

But now reality is sinking in. HA HA HA HA GET IT?!?!?! Sinking in!

I cannot afford a new sink. I could barely afford the freaking toothpaste.

I think Scotty describes my emotional state best:

I need to go lie down for a little while. Maybe when I get up, I will find this was all just a bad dream. Or that Sink Fairies descended while I slept and magically made the whole thing go away. Or that Santa is real. Or.....

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Empowering People With Disabilities

Today I am taking part, with over 300 other writers, in an online event to raise awareness of what it means, and what it takes, to empower people who are living with disabilities.

Like so many others, I never expected to fall into this Club, one of any number that no one wants to belong to. People we encounter everyday all have their own struggles and heartaches and challenges, it is part of life. For most, hardship is occasional and short lived. For those of us with chronic conditions or permanent disabling injuries, daily living equals confronting limitations minute by minute.

As Multiple Sclerosis steals more and more from me, it has become harder to do things I completely took for granted my whole life. Getting in and out of bed, getting dressed, taking a shower are all normal activities of daily living that were done mindlessly and effortlessly before MS, but now all take exhausting effort. Once those things are done and I am finally out the door (doing an inventory in the car to make sure I haven’t forgotten something and I actually have all my clothes on) I have to then decide what am I going to use to get around. Will a cane suffice? Is it too hot for that? Then I’ll use my walker. Unless I have to walk for more than 10 minutes at a time, then I need the wheelchair. The cane and walker I can manage by myself. The wheelchair, I need someone to help me load, unload and push me. I can’t push myself because I have the added bonus of an almost useless right arm following a shoulder fracture.

My doctor has ordered a power wheelchair for me. We have already begun the battle with the insurance company to cover it. But my co-pay for the new chair would be over $1000. I don’t have $1000, so the whole thing is moot. Additionally, a power chair is so heavy I need a lift or ramp to get it into my SUV. I can’t afford those things either and they are not covered by insurance.

Are you still with me? We haven’t even left the driveway yet.

I was laid off in February. So if it is a job interview I am heading for, I have to weigh the pitfalls. Showing up with a cane or walker, how low on the list do I drop? It is clearly pretty far, as, despite a stellar resume, I have received no offers to date. But it is impossible to prove discrimination.

I always have to consider where I am going and how I will negotiate the landscape there. Are the doors easy to operate? Are there stairs? Is there a convenient bathroom?

Remember, we’re still in the driveway.

This is our daily reality.

Once out in the world, thanks to the Americans With Disabilities Act, there is more disabled access than ever before. Naturally, it is a work in progress. It is impossible to retrofit every existing structure in the United States to accommodate a variety of disabilities. My philosophy is one of patience and reasonableness. To be a gadfly on this issue would not serve me, or anyone with a disability, well. I see how people like that are treated, how they are resented, how they are not taken seriously and how they ultimately damage the cause they are trying to promote.

It is essential to recognize ADA compliance as an important issue that effects us all, not something that a few whiners with a sense of entitlement are carrying on about. It is important to be taken seriously and to be understood, because there still is so much to be done. And this needs to be a concern for everyone because every human being has the potential to become disabled.

For one thing, people need to be taught how to interact with people with disabilites , to behave just as they do with everyone else. This was emphasized to me when I went to the theatre with my friend last week. People, when they didn’t look away, gave me pitying smiles. Several leaned over, almost appearing as though they were going to cluck me under the chin, and asked if I was enjoying the show. “Very much so!” I would reply with a frozen smile. After a few times it got a little comical. Have you ever been asked that question by a complete stranger?!? Don’t be artificially nice to someone who is disabled. It is insulting and creepy.

I was raised in an Irish Catholic tradition of self effacement and a firm belief that pride goeth before a fall. Combine that with 1950’s traditional gender roles and chronically low self esteem and I am not a person who is comfortable with the word “power”. Or with asking for things I need.

On the other hand, I also have a deep vein of stubborn rebelliousness that has bubbled up my whole life, making for a constant dichotomy that has both kept me strong and gotten my ass in a heap of trouble on occasion.

This wacky combo allows me to be patient with the barriers that are place in front of me, but tough enough to challenge things that can clearly be changed.

This would be my wish list of disability awareness and empowerment:

• People with disabilities are just like everyone else. Treat us that way. Don’t treat us like exotic objects or creatures needing pity. We used to be you. You could be us.
• Don’t refer to the accommodations given to someone with a disability as “perks”. We don’t want special favors, or “concessions” as another person with a disability referred to the accommodations that are occasionally necessary. We just want to live our lives as normally as possible.
• Remember, we would gladly give up that parking placard for the capacity to walk again.
• Don’t make assumptions about a disabled person’s abilities. Someone in a wheelchair is most likely to be just as cognitively aware, if not more so, than everyone else. Don’t assume they are simpletons and talk to them like they are 5 years old.
• Don’t dismiss us from the job market. I am desperate to work again. But prospective employers see my limitations, not my years of experience. They lose the fact that I excel at trouble shooting and problem solving and, with my work ethic, would be an asset to any employer.
• If you are aware of an access issue either in your place of work or any other building, bring it to someone’s attention politely and with the assumption that it is either already under consideration or has not been an issue before. Do not behave as though it is a deliberate attempt to keep disabled people out. Like with anything else, you get more flies with honey than with vinegar. And yes, it is the law, but sometimes making it work takes an incredible amount of time and effort.
• Be sensitive to the architectural integrity of places that may never be capable of becoming completely accessible, such as historical buildings. People with disabilities do not want to destroy the historic legacy we have in the name of access.
• If the access we have is not ideal, such as is only achieved through the kitchen of a restaurant, don’t take it personally. Assume that they have done the best they could in terms of the architecture and be happy for the access that you wouldn’t have otherwise.

Finally I would implore, be an advocate for the disabled. Empowerment is something everyone should feel, no matter what their status. Awareness takes time and it takes teamwork. If you don’t already know someone with a serious disability, odds are you will. An accident or illness can put you there with the speed of light. So this is an issue for all of us.

Thanks. Just by reading this, you could make a difference.

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Friday, July 23, 2010

Hating Hate

I have a bad habit of saying, in frustration, “I hate people”. Well of course, I don’t hate “people”, I hate the way they frequently act. Boorish, thoughtless, demanding, ignorant, all these behaviors will set my teeth on edge and result in my blanket overstatement. And even as I say it, I know it is not really true.

I learned acceptance and tolerance from my grandmother, who also taught me wrong is wrong, no matter whose name it is being carried out in. Hate the sin, not the sinner is ingrained in me. “All behavior has meaning” was drummed into our heads in nursing school. And, a genuine Granola Girl, I came of age with the Woodstock generation. This was a perfect storm of circumstances that resulted in knee jerk bleeding heart liberalism.

There are some actions and beliefs, however, that are so egregious they are utterly unacceptable or understandable on any level.

Blind hatred is an evil as old as human beings: who is right, who is wrong, who do you love, who is better, who Mom likes best, an infinite number of possibilities. In my 55 years I have grown so, so sick of how we do not learn, ever, what seems so obvious to me: we are all the same. You are me. Whatever your color, your religion, your sexual orientation, your ethnic background, your birth order, we all start from the same few cells.

Sure, I know that may be oversimplifying and naïve on some levels. There are traditions and unique aspects of every culture that need to be cherished and protected. We want to have diversity. But come on. Because of hatred, how many indigenous peoples will be exterminated? How many wars will be fought to close concentration camps? How many little girls will be blown up in church? How many young men will be tied to a fence and beaten to death? How many towers will be brought down?

The other day I commented on a blogging site about the controversy surrounding the building of a mosque in lower Manhattan. The protest is perpetuating hateful stereotypes, I maintained.

But today, as part of my Commitment to Being Open-minded, I followed a link to an Islamic website, one that purported to be moderate. And there it was, hate filled rhetoric, so repugnant I felt dirty and embarrassed and afraid and I couldn’t get off fast enough.

It was the same thing all over again.

“You have to be taught to hate and fear”. It is an old song, but still so true. So where is it going to stop? Who among us, Muslim, Christian, Jew, Democrat, Republican, heterosexual, white, black, and on and on, is teaching a new lesson? We are all responsible for ending it. If we don’t, then we are responsible for continuing it.

It starts here.


Saturday, July 17, 2010

A Sheep and Baby Jesus Fracas

There is a basket under my desk full of what I like to call my prototypes. Things I am working on that haven’t quite come out the way I intended and need a little more work. Or need to be thrown away. It depends on your perspective. My 25 year old daughter Mary Kate eschews the word “prototype”. She calls them “fiascos that no one in their right mind would ever be interested in buying”.

Fiasco-shmiasco. Everybody’s a critic.

If I am making something and she comes in the room and bursts out laughing, it goes right into the prototype basket. Just hedging my bets.

One item in the basket is my personal favorite, although it is still in the “prototype” stage. I plan on calling it A Heap of Sheep, which I think is endlessly clever and hilarious. Mary Kate says “That is the stupidest thing I ever heard.” Pffft. What does she know?

Anyway, my idea is to have three little graduated stuffed sheep, one on top of the other, as a pin cushion. I sewed them, stuffed them, stitched them together and added two vintage wooden spools instead of legs to stand them on. There is one little hiccup. If you try to stick a pin in them, they fall over. So I’m still working on it. I don’t know how I expect to defy gravity, but I am nothing if not determined.

The other day I was sewing and Mary Kate had nothing better to do than torture me. She rummaged through my prototype basket and pulled something out.

MK: What is this?
Me: That’s my Heap of Sheep (explained what it was)
MK: That is the stupidest thing I ever heard.
Me: No it’s not. It’s clever and funny and practical.
MK: But they don’t look like sheep.
Me: Well, they are representative of sheep.
MK: They don’t even look like representatives of sheep. They don’t look like anything living.
Me: Yes they do, they look like sheep.
MK: But they don’t have faces or ears.
Me: Yes they do, those black pieces of felt glued right there.
MK: You mean the things that look like bullets?
Me: They’re faces.
MK: They are nothing like faces. They’re bullets. And anyway, sheep are soft and fuzzy.
Me: Well those are. (I had used natural cotton batting with brown flecks through it)
MK: No, they’re not. What is this stuff anyway?
Me: It’s cotton batting.
MK: You made sheep out of…cotton?
Me: Well I thought it looked like, you know, sheep covering.
MK: Sheep covering? Do you mean…wool?
Me: Yes.
MK: ha ha ha ha ha Sheep covering!! ha ha ha ha ha
Me: Go away.

I kept working on them, trying different things. I was in my room the other day and Mary Kate was at my desk in the den. She called out.

MK: What are these things? Finger covers?
Me (to myself): Curses! Forgot to put away my sewing. (to MK): mumble mumble mumble
MK: What?
Me (yelling): sigh THEY’RE SHEEP FACES!!
MK: ha ha ha ha ha ha

Harrumph. I still think my Heap of Sheep is brilliant.

So anyway, I made an Advent calendar for my grandson.

Someone with an ounce of common sense would plan to fill the pockets with coins or Hershey’s Kisses. But not me. No, I planned to make 25 little felt ornaments.

Felt, that ubiquitous material that even three year olds can manage, is very hard to work with. It stretches, it tears, it doesn’t have the give fabric does. It is very unforgiving. I say this in advance, in my own defense.

The little ornaments were not going well.

I finally got a few made when down swooped The Critic.

MK: ha ha ha ha What is this?
Me (grimly, through gritted teeth): It’s baby Jesus
MK: HA HA HA HA HA HA HA What part of THIS is baby Jesus?!?!
Me (weakly): It’s abstract.
MK: ha ha ha ha It’s not abstract, it’s Pac Man. It’s Pac Man gobbling up a Communion wafer.

Now that even made me laugh.

You decide:

Guess what? Shep is going to have coins and Hershey’s Kisses in his Advent calendar.

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Friday, July 16, 2010

My Sweet Boys

Happy, happy birthday to my wonderful son. He has brought such adventure to my life, a life that would have been poorer without him in it.

This is a slideshow I did for him last year. The song is so perfect that I couldn't do any better this year.

His son, my darling grandson, is his image. We had lunch together today and I was able to get these snaps. Usually he is strictly a "NO PICTURES" man. I am so happy to report also he loved his quilt. Unfortunately, that love was not shared by the lady at the next table when he whipped it around and hit her with it. Some people have no sense of humor.

Happy birthday also to my dear cousin and godson. He was a sweet baby, born precariously early but with our family's typical stubbornness he is here today, hale and hearty. He grew from that sweet baby to a sweet little boy and, now, to a lovely, funny, gentle man.

I am so happy to have you all in my life.

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Sunday, July 11, 2010

Crisis and Discord in the World of Multiple Sclerosis, Continued

On June 28, 2010, an article about CCSVI appeared in the New York Times, the first major news outlet in the United States to provide such coverage. Written by Denise Grady, it is a succinct and balanced report on the condition, the treatment and, largely, the furor surrounding it.

I am on the fence about CCSVI and what is now referred to as the “liberation procedure” (because of the recovery, or “liberation”, that many patients have reported). The evidence at this time is primarily anecdotal and there has not been a large scale, blinded study. I also believe MS is a spectrum of diseases that will never have one single cure. However, I read the article with interest. And was stopped in my tracks by a statement attributed to Joyce Nelson, the President of the National MS Society. She was quoted as saying, in regard to the unprecedented hue and cry for this procedure:

“I wasn’t aware how thin the veneer was and how close to the surface the frustration was.”


The President of the National MS Society is not aware that MS patients ARE DESPERATE FOR EFFECTIVE TREATMENTS?!?

I wrote an outraged letter. I have never been a fan of the NMSS, although I have done the walk every year, mostly to avoid a sense of utter futility in facing this disease. But I receive a glossy magazine every two months that really offends me. It extols MS patients who climb Mount Everest or folks who are relentlessly cheerful as they claim MS is a gift that has caused them to appreciate life or people who parrot the MOST obnoxious lie of all and say “I have MS but MS doesn’t have me”. It is loaded with pharmaceutical ads, which cause me to question their neutrality. I have no place in this organization as someone whose life has been shattered by this disease and says so. You are never going to catch me saying anything but the truth: it absolutely, positively sucks. No plus side, none at all.

In my letter to Ms. Nelson I described my indignation at her seemingly oblivious remark. I cited her compensation, almost a half a million dollars, compared to mine, now practically nil despite years of work and multiple degrees. I was livid and it came out in my letter. If she had so little true knowledge of people with MS, she had no business being in her position.

This Thursday, I had some sort of bug and for the first time in ages rested the whole day, actually napping through the afternoon. And while I was sleeping, who did I get a call from but Joyce Nelson herself. She implored me to call her back, which of course I would, I am not a complete cold hearted cow. (Hey! Stop laughing!)

I was truly surprised and impressed. And embarrassed. The only important call I get in ages and I am napping for the first time in about two years. We eventually caught up with each other the following morning and had an extremely positive and, I think, encouraging, conversation.

Ms. Nelson explained she had spoken with the reporter for at least an hour, so there was far more to what she said. And, to her frustration, the one quote was not expressing what she intended at all. She told me that she was already directing change at the MSS within the framework of a five year plan, especially to embrace individuals who had progressive forms of the disease. The more she told me, the more it came clear to me that her perspective and focus, the revamping of the MSS to be more inclusive and a reconsideration of the tradition of caution in the face of new modalities, did not meet the reporter’s agenda of an article purely about CCSVI. So Ms. Grady, at the Times, utilized a statement that was not deliberately misleading or misquoting, but one that fit what she needed in the context of her article. And it did fit, because people with MS have created a passionate groundswell of faith for this procedure. That was one of the main points of the story. Besides explaining what CCSVI was, Ms. Grady was demonstrating how frantic people with MS are, that they would chance an experimental treatment with side effects like strokes and potential damage from stents that come loose and travel to the heart. It was unfortunate that while Ms. Nelson’s quote served the reporter’s purpose, it did not serve her well at all.

I was frank and told Ms. Nelson exactly what I thought of the MSS. I told her of stories from fellow MS patients, about their fruitless and frustrating negative experiences with the organization. My own experience was of offering help rather than asking for it. I sent my resume and a proposal for speaking topics several times to my local chapter, which is less than a mile from my house. I never received any follow-up. Not even a ‘no thank you’. One of these offers was relayed directly to the President of the local chapter, who also did not give me the courtesy of any response. This man has since been promoted within the organization.

Ms. Nelson expressed being heartsick at these occurrences. I have to say, I was touched by her apparent earnestness, her pride in the MS Society and her expressed desire to make the organization something that embraces all people with MS. I told her at this point, the MS Society really marginalized anyone who did not fit their glowing, denial-filled stereotype. I believe that was hard for her to hear. It would be hard not to take criticism like that personally when you have been at the helm of an organization for an extended time.

I (of course, angling for a job; communication and management is my area, after all, and I would give anything to work again), gave my input: the MS Society cannot afford to be a cautious, staid and business–as-usual organization any more. It needed a shake up, it needed to reinvent itself into something more dynamic and original. If it was me, I would not accept that the Society was not extraordinary, fresh and constantly looking for new ways to do things. This is the only way to survive in business and it is the only way they can truly serve the needs of the people they purport to be there for. People with MS have to constantly reinvent themselves. So does the MS Society.

To her credit, Ms. Nelson listened to every word I said and expressed gratitude for my honesty. She was warm and gracious and generous with her time. She may have hung up the phone and said “Oy, what a nut!”, but I don’t think so. I got the impression of sincerity and a true desire to have the MS Society be a world class, cutting edge, risk taking concern.

So, at the end of this week of drama, where are we? Well, I still don’t have a longed-for job. My house is still crumbling. CCSVI is still a wildly hot-button, controversial issue, reviled by some, tolerated by others, and pursued passionately by desperate MS patients. The MS Society did some impressive backpedaling and posted a truly informative page on the theory and procedure, even to the extent of linking some material that ultimately is not terribly flattering to them and their delay in addressing the issue. I made a positive connection with an individual in a position of influence that I believe really wants to do good; someone who wants to be an ally in the fight against this loathsome disease and is proposing an organizational paradigm shift as part of that fight.

It will be interesting to see how this all plays out.

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Saturday, July 10, 2010

Crisis and Discord in the World of Multiple Sclerosis

There are many disheartening aspects about Multiple Sclerosis, even aside from the physical deterioration. One is that there is no cure. Another is there are no treatments that are 100% effective or safe. We have made some progress. Fifteen years ago there was virtually no treatment for MS besides the occasional steroid protocol. I say occasional because steroids are cumulatively dangerous and must be used judiciously, for only the most debilitating relapses.

There are five medications currently used to treat MS, but they are called ‘disease modifying’ agents, as that is all they do. They can delay or slow the progression of the disease, but not stop it. Even then, they are only effective a portion of the time, 30% to around 60% depending on the drug and when in the disease process it’s started. They are all administered either through injection or IV infusion and all have truly awful side effects, from continuous flu-like symptoms, to significant injection site skin damage to immune suppression that can result in a fatal brain infection, PML. That last medication is Tysabri, the drug that I receive through an IV infusion every month. The risk of PML and other deadly problems (liver damage, melanoma) increases with time. I am entering my third year on Tysabri. No one knows what happens after so long on this drug.

With these things in mind, consider the reaction to research by a respected and reputable Italian physician, Dr. Paolo Zamboni, who proposes a theory that some cases of Multiple Sclerosis are caused by blockages in the veins that allow blood to return from the brain to the heart. This condition is called Chronic Cerebrospinal Venous Insufficiency, CCSVI. Dr. Zamboni’s approach was a relatively straightforward one: try unblocking the veins and the result should be improved MS symptoms.

Lo and behold, some patients did experience just that.

So you would think that neurologists and news organizations and the National Multiple Sclerosis Society would have been all over this amazing, promising, minimally invasive new advance for an incurable, untreatable disease.

Instead, in the United States, from the professional community, there was the overwhelming sound of…crickets in the otherwise still and quiet night.

My neurologist said he had never even heard of this research when I asked him about it in January of this year, “but it sounds ridiculous”. I had to fax him the peer reviewed journal article by Dr. Zamboni. There was no public response from the National MS Society. American doctors who did know about Dr. Zamboni’s work were generally sneering.

While there was silence and/or downright hostility from the people we depend on to help us, in contrast, the community of people with MS rose up in an outcry of pleading for testing and treatment. Canada was on the forefront in North America, way ahead of us here in this country in at least addressing the possibilities inherent in this process.

Very slowly, in tiny, quiet pockets, and only due to patient activism, venoplasty and stent placement to treat MS began to be done here in the United States. My friend Marc, at Wheelchair Kamikaze, has been a major catalyst in disseminating responsible data in a readily understandable format about the procedure.

There was still nothing from the MS Society.

Next: Finally some exposure. And it gets personal, on two levels.

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Friday, July 2, 2010

Fireworks. Celebration. And My Little Dog, Too.

I wrote this post as a submission to Grand Rounds, so it has info most of you are already familiar with but I had to fill in for strangers who might read it. The theme was "Celebration". I don't know if my piece will be chosen for this week, but the topic inspired me. :)

Fireworks. It felt like fireworks going off in my arm, hot, exploding white light.

I hit the cement patio like a meteor, my foot caught in a noose of loose wire that I never saw. My face was cut by my glasses, my hands were scraped and bleeding, as were both knees, but it was that arm where the fireworks were bursting repeatedly.

That was two years ago. I shattered my shoulder in that fall and have had three surgeries to repair it, including a partial replacement. But my arm still, for the most part, hangs painful and essentially useless at my side. And no one can figure out why.

Multiple Sclerosis is considered the most likely culprit for the lack of healing and constant pain. I have been diagnosed for five years now (a 50th birthday present!). And because of the mystery that is MS, an accident most people would have recovered from long ago continues to impact every aspect of my life.

MS has left that life, formerly organized, prosperous and going nowhere but up, in shambles. It cost me my career in executive health care. A widow and now unemployed, I cannot afford to maintain my beloved home, a charming Craftsman cottage, which is crumbling around me. Everyone I know is losing patience, constantly pressuring me to give it up. I am barely scraping by. I am a nurse and I have a Master’s Degree, but I am sewing to make ends meet, like something out of a 19th century novel.

So what do I have to celebrate?

I am still here, that’s what. I rise up from each blow and figure out what I can I do next. I keep reinventing myself. It can be almost a weekly occurrence, but hey, flexibility is my middle name. I am no Pollyanna. I do not accept that ridiculous deception that MS is a ‘gift’ that has helped me to stop and smell the roses. It is a cunning, vicious thief that has stolen so many things from me I cannot even make an inventory.

But what is left is precious. And that is what I acclaim. That I can continue to enjoy my beloved children, my adorable grandson, my wonderful, giving, loving friends. There is my sweet dog, who gives me unconditional adoration. There are the many rewards I get from writing my blog, such fun and so sustaining. There is the breeze that comes through my bedroom window in the early morning, cool and promising. A moment like that is a gentle fragment of bliss.

I soldier on. I will not profess it is easy to maintain, it's not, it's hard as hell. Some days, I can't get there. But I keep reasserting my maxim and working to internalize it. I read, recite, repeat: Life is good. Love it. Be grateful.

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