Ooo! Ooo! I Have A Question!!...

The day I stop questioning things (especially authority) is the day I might as well step off the curb into the Big Bus Headlights in the sky.

I received an email last week from a company requesting my participation in a survey regarding TYSABRI (don't worry! I'll reprint everything right here for you to read.). I get email requests for all KINDS of things, which I half expect because I write a public blog about my life with Multiple Sclerosis. And for those of you not in the "know", the email address BrainCheeseMS@aol.com is specifically set only for responses from this blog...I have another private email my "other" friends and family use to contact me. In fact, probably not unlike YOU, I have several email addresses...tis the world we live in.

When I receive an email at the above addy, I can be certain the address was discovered only right here on CHEESE...someone would have to come to this blog to be able to contact me at that address. So, you can imagine my semi-surprise (I feign excitement here) when the above mentioned request arrived to participate in a TYSABRI survey...the *requester* must have lurked here on CHEESE (probably Googling *Tysabri*), noted I am currently accepting this drug, and sent me the email. Small world we live in.

Here is the initial email I received:

Hello.

I came across your website, and wondered if you would be interested in participating in a marketing research study we are conducting. We are seeking to pay people for their time and feedback on a marketing research study about the Multiple Sclerosis - particularly those on Tysabri. I copied the main information below.

Thanks you.

Multiple Sclerosis Marketing Research Study

We are recruiting men and women who are diagnosed with Multiple Sclerosis (M.S.) and are currently on Tysabri or have been on Tysabri in the past.
We invite them to participate in inidividual research interviews with a moderator:
IN-PERSON: at a professional marketing research facility in downtown Boston, Massachusetts or Nashville, TN
BY PHONE: during late August - early September

Your participation would involve one session that will last approximately 1 hour (multiple times are available). You will be paid $200 for your time and opinions.This research is being conducted by a professional marketing research firm Marketry Inc. www.marketryinc.com For additional information regarding this study, please contact the person below. Please include the following information: Your age, Your Current M.S. Medication, Your Prior M.S. Medication (if any), Telephone Number, Name, email. We would like to ask you a few questions to make sure you qualify for our study.Thanks much.
--------------
Mary Ann Smith-Janas
Marketry
ph: 205-802-7252
fax: 205-802-7265
http://www.marketryinc.com

Well, hell...if you've read more than one post here on CHEESE, by now Y'ALL KNOW ME! I, of course, had questions. WHO really wanted to know my opinion (because frankly, opinions are like A-holes...everybody has one...another inherited saying from my mother. sigh) and why??? The scent of Big Pharma wafted in the air.

Soooo...I fired off THIS email in response:

On Aug 13, 2008, at 3:01 PM, braincheesems@aol.com wrote:

Ms. Smith-Janas,

Your email is certainly intriguing. I DO have one question, however, before consenting to your request: Who is your client regarding this Tysabri survey?

Please feel free to email me directly at BrainCheeseMS@aol.com as this is a confidential email address.

Thank you,

Linda D.

I also did a tiny bit of investigative research about the Marketing/Survey company and discovered they ARE a legitimate business. But I still wanted to know WHO in the world would pay me $200 for my opinion? This is what intrigued me the most because, I CAN BE BOUGHT! That's right...pay me enough and I'll whistle *Dixie* out my behind for you if that's the "opinion" you are searching for. LOL It seemed *someone* with fairly deep pockets was willing to pay for my opinion (and obviously the opinion of other MSers on TYSABRI) AND that opinion was WORTH something to them.

I received a fairly rapid reply to my above email:

Sent: Wed, 13 Aug 2008 1:35 pm

Linda, thanks so much for your note. I'm not able to reveal the sponsorship of the research. To maintain the integrity of the research and make sure comments aren't biased, oftentimes our clients request anonymity.

While I can't reveal sponsorship, I can promise that your identity, too, will be anonymous. Your name will NEVER be associated with your comments. Instead, my company puts together a comprehensive report that illustrates the range of stories we heard from participants - WHAT was said, never WHO said what.

The interviews are very conversational in nature and, I think, fun.
I hope you'll consider participating. If not, I definitely understand. Thanks so much for responding to my email! And for creating an interesting and well-written blog! :)

Mary Ann

Top secret? Hmmm...the scent of Big Pharma OR the Republican National Party grew stronger.

Now y'all KNOW what I think of pharmaceutical companies in general...they SMELL funny and we're just never going to be close friends! And y'all KNOW I have "issues" with our health care system in general in the ol' USA. I WILL NOT have my opinion bought to line the pockets of a company CEO who will NEVER IN THEIR LIFE BE FACED WITH THE DECISION TO BUY FOOD/PAY RENT OR PURCHASE THEIR MS MEDICATIONS!!! **Mumble, mumble under my breath**

But, then again, I DON'T know for sure WHO would be behind BUYING my opinion about TYSABRI and, "Mary Ann" seemed nice enough. I made a mental compromise: I would agree to participate in the company's survey, but I would NOT accept what felt/feels like *blood money* for myself...I would turn around and donate that $200-dollar-opinion to THIS organization supporting MS locally in my region. Yes, I WOULD steal from the rich and give to the poor, thus making my Robin Hood-esque *opinion* truly worth something.

But...I STILL had lingering questions...and...I just COULDN'T stop myself. I sent this email back Thursday morning:

Ms. Smith-Janas,

The notion of a Tysabri survey has my interest and I will definitely commit to participation. I don't know what else you might need from me at this time, but since I don't live in the Boston area, I would imagine you will need a phone number to contact me (as well as my FULL name!).

I, of course, have other questions of you/your company if you would be so kind to respond? I realize you cannot reveal the identity of your client, but I am certain other MS blog readers might like to know some of the "ins and outs" of your survey process.

1. For instance, what is the ball park range of COST for your company to complete a survey such as the one you are conducting on Tysabri?


2. Does this estimated cost include the $200 payment to each participant?


3. How many participants do you expect to include in a survey generally?


4. How does the surveyor justify "unbiased" responses in the light of participants being PAID to respond? In other words, how does the surveyor decide which surveys will include a payment to the participant and which surveys do not...or do ALL of the surveys done by your company include a payment to each participant?


5. Do you enter a survey process with a specific "goal" in mind?


6. Does your client provide the questions or justification for the questions you ask?


7. Is each participant made aware of the final outcome of your survey?


8. Will they be contacted directly, or is this information only made available to your client?

These are just a highlight of questions that come to mind about your business and this survey process in general. Thank you for your time and consideration.

Linda D.

**MAJOR SIGH with pining face**

She don't write...she don't call...(well, *she* also *don't* have my full name OR my phone number yet, so that could be part of the communication issue...hehe) I have heard nothing back from Mary Ann (I sort of feel like we are on a first name basis here...can I CALL you that?) and I WORRY I have once again ASKED TOO MANY DAYUMED QUESTIONS!!! **Another big sigh for effect**

Who knows? Maybe my email was lost in the email/Ethernet? Maybe HER email reply was gobbled up by AOHELL and I'll NEVER get any answers? Maybe my questions are just too big to bother with? It's JUST a stinkin' survey after all.

The worst part of my bad habit QUESTIONING? THIS organization loses out...I'll keep you posted...

The Pathology Of Lying...

I recently received an email from a CHEESE reader, who asked, "Why do people lie about their (MS) symptoms?" I asked permission to discuss the context of this question here (while maintaining said person's anonymity), because I think it is the CONTEXT or situation surrounding the reader's question that is most important. The fact is we ALL lie about things in our life...and if you piously try to tell me you don't and have NEVER spread your truth thin, well...let's face it...you're a LIAR. LOL But this emailer's question runs far south of the everyday lies we ALL tell, running right along the line of the pathological. And, since I work in psychiatry, I will attempt (at best) to shed some light on her disturbing experience.

The email I received was regarding a particular "chat" and message board in the Multiple Sclerosis community (which I will not disclose here to maintain anonymity!), where it appears many MSer's go to discuss their current symptoms, find MS friendships, and generally "bond" with each other around the common theme of MS. The emailer has been a member of this community for quite some time and, themselves, diagnosed with MS for just as long.

On this particular MS chat and message board, the emailer met a "new" member who had many questions about MS and generally seemed "lost" in the diagnosis. The emailer (being an old "pro" at MS) decided to graciously lend an ear to this newer member and try to guide them through the maze of living with MS. What transpired AFTER this initial contact was several WEEKS of intense contact, emails, exchanged phone numbers and conversations, plans to meet each other in person, etc. The emailer felt as if she and the new member were developing a solid friendship...having found their initial bond around the common theme of MS.

I will not go into gory details of the rest of this story (because it is just too long to disclose and I will NEVER get to the "why lie?" portion of this post if I do!)...but suffice it to say, after a series of accumulating and strange events (like 911 calls to assist the new member), it was discovered this person did NOT have MS at all! In fact, they most likely had never experienced MOST if ANY of the symptoms and hardships professed on the chat and message board. WHOOT, you say?!?

Interestingly enough, this is really NOT the first time I have heard a similar tale of deception. I know of at LEAST 3 other incidences of very similar circumstances from other MS friends or message boards. Knowing this fact, however, did not calm the emailer's woes...she felt angry, "stupid", and extremely hurt...and thus, posed the question to me, "Why do people lie about their (MS) symptoms"?

This is a very complex question and one that cannot be answered in generalization. And I think the FIRST order of business is to attempt to explain why ANYONE would tell a lie, deliberately deceive another, or not disclose their ENTIRE truth...something each and every ONE of us has engaged in one or more times in our lives, not just John Edwards (and research proves this number to be FAR more than a one time thing for anyone, myself included!).

Most people can identify who they believe to be "everyday liars"...a small list might include lawyers, car salesmen, and criminals/con artists...people who might lie for a living or to meet needs to sustain their livelihood. Somehow in society, we accept this. We KNOW this to be "true" as a general consensus, which is what we base many of our "truths" upon...a general societal belief or consistent pattern of behaviors in a society. For various reasons, we don't QUESTION these liars because we already ASSUME what might be coming from their mouth contains falsehoods! We therefore, as a society, "accept" we will most likely be lied to by these individuals and we put in place safeguards in our psyches, behaviors, and laws when dealing with these individuals directly.

We also, on a very deep level of our OWN ego/psyche, understand and can RELATE to the lies of the above mentioned (and above mentioned being generalized! Please...no emails from lawyers telling me they will now SUE me for defamation...sigh.). We can rationalize this type of lying because we have engaged in it OURSELVES in one form or another.

Most of us prefer to use the watered-down term of a "white lie" when discussing this form of deception. And the word *white* in the description refers to deception for "good". White lies are told when we believe on some level telling our TRUTH (or all of our truth) could be harmful, either to ourselves or another. WE, you and I, tell "white lies" to avoid hurting another person's feelings, to avoid embarrassment, or to reassure another, believing that this type of action is "best" for ourselves or the person involved (as possible rationales)...we, you and I, as a species AVOID pain and painful situations REFLEXIVELY, both physical and emotional in nature. It is a very basic form of survival, taking us from the simple reflexive physiological response to the more complex mental negotiations we make in our brains (psychological) to AVOID pain.

So, can "we" (and as my mother used to say whenever I'd use the word "we" inappropriately, "What? Do you have a turd in your pocket?", meaning myself and my "turd"...) at this juncture accept at face value the generalization that "WE" all tell lies or do I need to continue to beat this dead horse?!? Stop reading if you are in denial about your own behaviors here...this post isn't for you.

In the case of my emailing acquaintance, the person she speaks of fell far out of the boundaries of everyday deceptive/lying behavior. And because of this, the emailer had no basis--no format--to conceptualize WHY or HOW anyone would ever behave in such a manner...she simply could not relate. And this, my friends, is where "white lie" behavior morphs into "black lie" behavior, and is deemed *pathological* in nature. The lying does not fall into our society's accepted guidelines of *lying*.

In my 22 years of psychiatric nursing experience, I have encountered countless examples of *pathological* lying. I have also witnessed OFTEN a feigning of psychological symptoms in which a person "pretends" (or may even believe) or "puts on" symptoms to meet their needs. In my business (of controlling WHO might get admitted to a psychiatric hospital and WHO does not), we (the OTHER collective "we") sometimes refer to this behavior as "looking for three hots and a cot". In other words, the patient/individual feigns psychiatric symptoms to obtain access to a warm bed/shelter and three meals a day...NOT because they need the environment to treat psychiatric symptoms...but because they DESIRE this environment to meet food and/or shelter needs. Again, WHOOT you say?!? Yes, it does happen...frequently. But this is an entirely DIFFERENT topic to be chronicled in magazines such as "Psychology Today", and NOT something that needs to be addressed here. ("Thank gawd", you say.)

If I, as a behaviorist (and I am actually a behaviorist existentialist in my educational background and belief...meaning, I believe ALL behavior has meaning AND sometimes Sh!+ happens!...psych joke, sorry.), can convince you that ALL behavior has meaning, no matter how dysfunctional, I can perhaps form a context for understanding the pathology of lying and *pathological lying* as well. And, if you "can't go there" with me, then the rest of this post is going to be pretty boring.

Generally speaking, theorists believe it is human nature to begin our "lying paths" around the age of 5 or 6 years old. This is the age when most of us mature enough to understand the consequences of our actions, when we also developmentally begin to feel guilt, particularly surrounding issues with our parents or authority figures, and when we are most seeking attention. By the ages of 7 to 8, we tell lies to avoid punishment or to avoid certain tasks. By adolescence, our lying becomes more skilled and complex as we begin to navigate our independence from parents/authority figures and try to establish our own sense of self. It is believed lying is a LEARNED behavior, and for the most part, by the age of adolescence we are capable of feeling remorse...for our actions AND our lies.

When lying or the art of deception becomes *pathological*, is when there IS no remorse or the act of lying is habitual. It becomes pathological when the individual themselves may not be able to distinguish the untruths they tell from reality...in other words, the individual has told so many lies, THEY no longer know where the truth *lies* (pun intended). This is NOT to say, however, that the act of lying or the habit of lying has ceased to meet a need...in fact, quite the opposite is true. The individual must tell more and more lies to maintain the image or facade they are creating to MEET that need...whether it be for attention or some other gain entirely.

So, exhaustively you may ask again, "But WHY would someone lie about their MS symptoms?"

I believe the answer to that question is both simple and complex. Simply put, someone might lie about their MS symptoms or even HAVING MS to meet a need...and generally speaking, that need is for attention or belonging or identity. Those of us with MS know the importance we place upon SHARING our symptoms with one another...we desperately want to know we are not alone with this disease. We very much want to help another who might be struggling with this disease. We often refer to a "club membership" with this disease. We "belong" with each other under the common theme of Multiple Sclerosis.

To someone very much needing a sense of belonging, identity, or attention, the MS Community is a wonderful group of caring individuals...we are both knowledgeable and educated about our disease and most of us have a sense of wanting to help others "get through" the rough bumps of the diagnosis because we have EACH BEEN THERE OURSELVES BEFORE. We understand what it is like to have a hidden disorder that is both illusive and sometimes GRAND in it's presentation. We know what it is like to be "poo poo-ed" (discounted) about strange neurological symptoms and we know what it is like to feel isolated by this disease at one time or another. Imagine the ATTRACTION one might find to a group of MSers when they, for reasons unknown (or extremely complex reasons), have felt isolated, alone, discounted, not belonging, or needing of attention? Wow! They may not HAVE MS, but they certainly can relate to those feelings...but they can't *BELONG* to the MS Community without Multiple Sclerosis.

"But why would anyone in there right mind even WANT to have MS?", you MSer's say. They DON'T want MS...the person wants the attention or sense of belonging to a community WITH MS.

OK...that said, now on to another reason someone might lie about their MS symptoms or having MS. There is a well-known disorder (it's in the DSM-IV Revised, so you can check on me here) in the psych world called, Munchausen's Disease (it is a classified disorder, falling under the scope of factitious disorders). By definition, Munchausen's is a psychiatric disorder in which an individual *fakes* an illness, trauma, or symptom for the very purpose of gaining sympathy or attention. This person will often CREATE a medical crisis or disorder to gain the attention of the medical community (and just to scare you further, there is also Munchausen's by proxy, where an individual will create a disorder in ANOTHER to gain attention...usually parents of small children!). This person KNOWS they do not have symptoms of a particular illness, yet their need for attention is so great, they will feign or even self-impose the illness (sometimes by injecting themselves, beating themselves, and a whole HOST of grueling ways of obtaining an illness). This diagnosis has the primary SYMPTOM of lying...pathologically.

Someone with Munchausen's Disease must choose their illnesses well...or be "found out" by the medical community. They cannot chose to fabricate symptoms of an illness that can easily be detected with lab work, x-rays, or tests, otherwise the medical community will quickly discover the pathology of the lying and their source of attention will cease. Multiple Sclerosis is the PERFECT illness to feign! I mean really...how many of us have struggled to get a definitive diagnosis of MS for weeks, months, or even years?!? And there STILL remains no conclusive test that will absolutely, one hundred percent-ly, PROVE we've got MS percolating in our brains and spinal cords!!! Ta da...welcome the pathological MS symptom LIAR. It could take months or even years for someone or the medical community to *discover* specific neurological symptoms do not exist AT ALL in this individual.

Now, this is NOT to say everyone WITHOUT a diagnosis of MS must be lying about their symptoms...this is also NOT to say the MS Community shouldn't welcome those with loosely defined illness into the fold. MOST OF SOCIETY DO NOT FEIGN SYMPTOMS OF MULTIPLE SCLEROSIS TO GAIN ATTENTION. But, for that very small percentage of troubled folks that do, I am hoping this post will shed some light on the question, "Why would someone lie about their MS symptoms?"...

I'm tired now...I need to go *lie* down...I won't even add, "pun intended" here...

Welcome To My Office...

That's right...I spent the good portion of my work day stuck in our satellite office I fondly refer to as "The Kiln". It is roughly an eight by ten foot room/closet that has no air conditioning (save opening the main door and trying to suck what tiny bits of cooled air that exist from the hallway into the closet!) and is WEST FACING with a west wall of windows...aka, "THE KILN". After only a few short HOURS in THE KILN, my vision failed/blurred, my leg became somewhat numb, and my temper flared to match the near 95 degree air that I was inhaling into my lungs! Talk about working in a sweat shop...LOL.

The best part of my work hours occurred when I was paused at the Mountlake Bridge waiting for it to be lowered (it's one of a couple of opening bridges here in Seattle). It was dusk outside and I was just leaving my second stressful encounter with an angry ER physician for the day (maybe it was the heat here today, or perhaps it was ME that caused other "tempers" to flare in my presence!), when I glanced over at the car beside me in traffic. I did a double, then a triple take. I swear on all that is holy I *thought* the car next to me was being driven by one of those crash test dummies...you know the ones...without hair, flesh toned, and with somewhat of a flat face??? Turns out, on my THIRD look at the "dummy" in the driver's seat, it was just a very sad, ugly bald man!

Time to go cool down in an icy shower and wait for our NW heatwave to pass...before I start seeing "other" things that aren't really there...like humor in this post, for example...

God Bless The Canadians!...

"O Canada, terre de nos aieux, Ton front est ceint de fleurons glorieux."

OK...so I cut and pasted that above line of the Canadian National Anthem because I don't speak French...heck, I barely speak my English "good". LOL But I DO speak Canadian...hehe (or is that "eh eh"?)

Yes, I DID go on another border smuggling adventure this past weekend to visit the United States' lovely neighbor up North. And I am certain by even POSTING this admittance, I will now be on the USA terror watch list (puleeze, my fun-loving American "govmet"...I'm 44 years old, fat, and listless...I can barely pack Purdy's candy across the line, let alone plans for a "Nuk LEE er" attack!).

My partner in crime, Tina, and I try to make it to the beautiful city of Vancouver, B.C., at least once a year for good food, some shopping, and the "Canadian experience". This year's adventure turned out to be almost as fun as last year. We were greeted at the border by a Canadian Customs Official, who asked us the typical "before you enter Canada" questions, except he threw in a NEW ONE, which threw me for a loop.

"Are you meeting anyone in Canada today?"

Now, those of you who know me understand that I am both VERY concrete AND a jokester...these are lethal combinations when dealing with high-ranking officials (like police, politicians, the garbage man, etc.). I immediately flew into a panic by this question. I mean, OF COURSE, we'd be "meeting someone" while in Canada...it's hard to shop or dine WITHOUT meeting someone like store clerks or wait staff...what could this "high-ranking official" be fishing for?

Then it dawned on me perhaps he might have suggestions for WHOM to meet while in Canada for the day? I mean, both Tina and I are single...maybe he had some "friends" he thought we SHOULD meet since I'm certain he recognized two, extremely hot(flashed), older women in the car! I hesitated to pursue this angle just IN CASE I was misinterpreting the line...LOL

I wondered if answering his question WITH a question might be the best approach to gain access to his fine, northern country? Something like, "Do you have any suggestions WHO we might WANT to meet while in Canada?" crossed my mind. But, being the terminally frightened of authority figures person I am, I eventually just opted to reply with a flat "No", in response. I'm certain now my response closed a door to what could have been a VERY interesting Canadian experience (filled with a car search and maybe even an anal probe, no doubt!). We passed across the border without fanfare or notice, except for the downloaded rock and roll version I have of the Canadian National Anthem blaring on the car stereo.

It is amazing the difference one can find in people just by crossing an imaginary line drawn between two countries. MY experience of the Canadian people has always been very positive...Canadians are SOOOO polite compared to my American comrades and Canadians have way cooler money than the cruddy dollar bills that usually bless my hands. I mean, THEY have a "LOONIE" instead of a dollar for gawd's sake!!! How cool is that? Especially for someone like ME who works in psychiatry...

When I am in Canada, I don't have to worry that one out of every 3-4 people I meet on the street "might" be carrying a handgun as is in the United States...since there are only 30 guns per 100 people in Canada versus 90 GUNS PER 100 PEOPLE IN THE USA (making the USA the most armed country in the world). Oh sure, I know the Canadians have their fair share of crimes, but I don't hold that against them. They are just TOO DARNED POLITE to hold any contempt toward...well, except for the recent riot and the bus beheading...but OTHERWISE, I stand firm on my loyalty to the Canadian population and their manners!

Even with Great Britain's influence, the Canadians STILL chose to drive on the "right" side of the road...this is a definite plus when visiting the country. LOL And they post EVERYTHING in English and in French...just in case I might decide to LEARN French (or English, for that matter), I can count on my friends to the North providing me with ample opportunity. They prefer vinegar on their "chips" versus ketchup (which I think is REALLY a bit odd to call French fries "chips" in a French-speaking/bilingual country, but who am I to point a finger...). And best of all, the Canadians are still LIKED by most countries around the world (unlike my citizenship nation). Why? BECAUSE THEY ARE SO DAYUMED POLITE!!!!

So, hats off to my dear peeps in the Northern Frontier...you are a delightful group! And I hope you will STILL allow me access to your country once a year...even AFTER reading this post... :-)

Making Mole Hills Out Of Mountains...

Yeah, I KNOW I've got that saying backwards in the title, but this is what I've been trying to practice these days. I'm already a PRO at making MOUNTAINS OUT OF MOLE HILLS, so I thought I'd give the reverse a try for a while.

Yesterday, I had the pleasure of inviting two acquaintances-turning-into-friends over to my home for supper. Without disclosing too much personal data about my guests, I WILL say one of these folks is diagnosed with Multiple Sclerosis and just recently lost her job...which also means, she just lost her HEALTH INSURANCE. She did not have a high-paying job to begin with, but it DID pay her rent and groceries...it also provided her with access to medical care to treat her MS. We spent much of the evening discussing the ins and outs of applying for DSHS (state aid), disability, unemployment, and so on (I even suggested she go to the ModestNeeds.org website just in case she has a financial emergency arise in the next several weeks).

As I sat and listened to my new friend talk calmly about her latest predicament, I realized just how close to the line of financial disaster she walked. I also realized just how close to a potential catastrophic medical crisis she might be heading toward...without ability to purchase her Betaseron, she risked falling into yet another MS relapse. I felt pulled by her situation, yet knew I did not have the means to resolve it for her...even if I wanted to. The most I could offer for the time being was a grilled steak meal (because my mother taught me eating well could relieve any stress! LOL), a quiet home to talk, and companionship. At the end of the evening, I bid them both farewell and hoped things might turn around for my new friend.

I've never been one to count my own blessings because I suck so badly at math. I see several bloggers writing *gratitude lists* and even THIS process feels somehow difficult or false for me (I'm not saying that applies to anyone ELSE who finds the practice helpful!). After all, my personal belief for myself is, if I am truly "grateful" for something, I will live my life in a manner that demonstrates my gratitude. In other words, I must try to BEHAVE in a way that radiates my gratefulness.

You may be asking yourself, "So how does someone "BEHAVE" gratefully?" Well, that can be a tricky question. I try to live my gratitude through action, word, and deed. Grateful behavior requires a mind set of abundance for me...I must believe and have faith that I have everything I need and I am fulfilled. It is a matter of *faith* that all is well, which requires a certain perspective.

When I am wallowing in fear, it is very difficult for me to radiate gratitude...my emotional walls close in around me in a feeble attempt to make a smaller basket in hopes of giving me a false perception that what I have will FILL that smaller basket. What usually ends up happening however, is the basket becomes so small as I try to conserve everything, that I begin to feel constricted and small...not fulfilled and with abundance.

Behaving in gratitude doesn't mean I shouldn't PLAN for unexpected events in my life (specifically financial ones), but it does mean I must have *faith* that there will ALWAYS be enough of whatever I need...be it finances, love, friendship, food, or shelter. And I have found when I am able to practice behaving in gratitude, I am much more able to participate in giving away my abundance because I will never be "short changed" in life. I am much HAPPIER in life.

Another friend of mine recently dealt with a disturbing burglary to her office. She was upset (among other reasons) that a particular rose quartz rock I had given her had been stolen and she was worried I, too, would be very upset by this theft...that someone had stolen something dear to both of us. I thought about the issue only briefly then said, "It was just a rock...now someone else has it."

So many times in my life, I WISH I could maintain the "it was just a rock" attitude. So many times, I wish I could always have the faith to behave in gratitude, but I am far from mastering this experience. I'm still working on my height perception and being able to distinguish my mole hills from mountains...

Welcome To The Fold...

ATTENTION PLEASE...NEW MS BLOGGER ALERT:

MESSY STUFF: A LIFE WITH MS AND OTHER RAMBLINGS

THIS MESSAGE WILL SELF-DESTRUCT WHEN A CURE IS FOUND FOR MULTIPLE SCLEROSIS...so, like probably not in my lifetime or yours!

Danger And Rescue On The High Seas...

OK, so my day REALLY consisted of a lake, a dinghy, a near spill in the drink, and an almost removed fingernail...but it DID include a rescue!

As you may have been able to figure out by my plethora o' posts on CHEESE this week, I've had a bit of free time on my hands. I'm currently on my 6 day furlough from my job, so I've had a few moments to catch my breath, catch up on my blog reading, and catch up on spending time with dear friends. Today's activity included the latter.

My friend and now retired work side kick, Merrinuts, invited me for a boating outing that was just my style...a dinghy ride up the Sammamish Slough for a picnic on a bright, Seattle day. You may recall, I've been on the Merrinuts sailing craft before in my prior post, Adventures Aboard The Caranda . And you may recall, my only sailing experience has been aboard a Washington State Ferry and sailing small craft in my bathtub at a young age...neither, of which, qualifies me to knowledgeably respond to a call for "all hands on deck". So the thought of a small, inflatable boat with a motor in somewhat shallow waters in the slough between Lake Washington and Lake Sammamish seemed ideal.

I met Ms. Merrinuts at the marina and boarded the Caranda only long enough to step off the back of the sailboat and into the dinghy that awaited at the stern (or is that the bow? No, I think the back of the boat is the stern...sigh). We quickly motored away from the marina and into the open waters of Lake Washington, crossing the area of the lake where float planes come and go (I only know THIS because Ms. Merrinuts "used" to be a pilot...her life degenerated somewhere along the way...LOL). It was a beautiful, albeit somewhat cool day initially on the water. We traveled eventually up the slough, taking note of the many "duck butts" in the water (aka, ducks diving with only their butt's sticking up out of the water...hence the term "duck butts") and searching for turtles. It was a gorgeous day.

After a short time on the water, a park appeared where we could push ashore and tie up the dinghy. I carefully stepped my way out of the flotation device (dinghy) so as not to fall face first in the slough muck while I got my land legs back (and my MS body uncurled)...something I'm sure Ms. Merrinuts would have wet her pants to see. We then climbed up to a bench in the sun and proceeded to eat wonderful Subway sandwiches and chips and catch up on the happenings of our lives (the sandwiches were "wonderful" because neither one of us had to MAKE them!). It was a great day.

On the way back from the park to the marina, I was promoted to "captain" and got to learn the fine points of the outboard motor and steering...I did OK with my new role, even if I must say so myself. I didn't ONCE run us aground, hit any bridge pylons, or run over any "duck butts". Captain Stubing (of the "Love Boat"?!? DUH!) would have been proud (as would the captain of the Minnow from Gilligan's Island...hehe).

When we reached the open waters of Lake Washington, we noticed an Asian family stalled in a motor boat and attempting to row their way (with only one oar) out of the float plane landing area. Ms. Merrinuts (being the kind humanitarian she is) decided to check out the situation and see if we could offer a hand. It appeared the larger motor boat had stalled in the water, most likely due to sea weed, and the engine had overheated. The family was stuck on the lake (or up a creek without a paddle) and didn't seem to have a clue of knowledge about what they should or could do to remedy their precarious situation.

Ms. Merrinuts surveyed the situation and decided the dinghy outboard had enough horse power to try to tow the motor boat...the only problem? There was no way to tie up to the motor boat and the only line the boat appeared to have off the bow was about the size of a shoe string...the eldest male on the boat made comment that they had not had the boat "in the water for quite a while" (which led us to believe the Driving While Asian distinction should also apply to watercraft).

After several attempts to tie up to the side of the motor boat and only swinging in circles, I got the bright idea to try and HOLD the tow line while pulling the motor boat behind the dinghy...sounds pretty simple, right? OH SO NOT!!!!

We finally got a larger tow line attached to the front of the motor boat which I gripped in my bare hands and attempted to slowly tow the larger craft away from the shore where we had been dangerously drifting toward. This was a very sloooooow process. Ms. Merrinuts (unbeknownst to me) decided in her captain wisdom we needed more horses pulling the craft so we could exit the treacherous waters of the float plane landing area quickly. It was a good decision as we DID need more pull...I only wish I had been FOREWARNED of the decision first!

With a rev of the outboard, the dinghy flew into motion and began its surge across the open waters as I began my "surge" toward the stern of the dinghy while trying desperately to brace myself in the boat and avoid flying into the drink! And, as I scrambled to hold my footing, the pull of the tow line tightened around my right hand and wrists, creating a lovely tourniquet, while squeezing the 5h!+ out of my hand!!! My ring fingernail of my right hand cried, "Foul!", and decided to loosen itself in a feeble attempt to relieve the pressure upon it.

I would have cursed or screamed bloody murder, except I was just so relieved to NOT be drinking "duck butt" lake water, I thought it best not to take the name of the Lord in vain...there was still a far distance to tow the motor boat and I didn't want to tempt fate.

We eventually we able to unload our "dead in the water" friends on a much larger motor boat, who agreed to complete the tow back to the boat launch area, and we returned to the marina. I continued to play it cool (while my finger throbbed and I cursed a Mermaid's grave) and wipe the blood off my hand without drawing attention to my near amputation (OK, it really wasn't THAT bad...just felt like it...and for the record, typing sucks right now, too!).

We returned to the marina and the much larger Caranda, disembarked (I love that word and I can so rarely use it), and walked to my car to say our good-byes. We laughed about our experience and Ms. Merrinuts jokingly said, "Well, we'll probably read about this rescue on the front page of the Seattle Times tomorrow."

I told her I doubted it would make that kind of news...but it would DEFINITELY make a certain person's blog... :-)

We Get By With A Little Help From Our (Anonymous) Friends...

Sometimes I stumble randomly upon things that bring both chills and tears to my eyes...here's my recent find: ModestNeeds . It is a website that was started by a guy in 2002 (I think...my memory is sooo bad and I just READ this information!). He set up a "grant" site on line where people could put in applications for assistance with things like medications, rent money, etc., and the site would review the applications, accept donations, and "grant" small amounts of money to those in need. Since he first began the website, it has grown into a several hundred thousand dollar "grant" giving machine!

Of course, I was at first skeptical. It's my nature. :-) I read about the program online in some twiddly AOL News post. Thoughts like, "fraud", and "online theft", rolled around in my brain. So, I went to the site to check it out.

After reading for over an hour about the program and doing a bit more online research regarding the financial nonprofit status of the organization, I decided to check out some of the applications for "grant" money. The first one I clicked on had a Seattle address (all identifying information is kept anonymous for privacy purposes) and I scrolled down to see what some poor soul in Seattle might be needing a few hundred bucks for. After all, the applications are carefully screened for authenticity, so I doubted the request would be from some silly Microsoft bloke who just lost his job and couldn't afford to continue his HUMMER payments (there are financial qualifiers for the applicants, who must submit several forms of proof of identity, income, status, and need). I was immediately hooked...the application read as follows:

Co-Pay For Electric Cost to fully fund this application: 750.00 Modest Needs Points

I have MS and have been using a manual wheelchair to get around for the past 2 years, after I became unable to walk.However, at this point I can no longer use a manual wheelchair due to extreme weakness brought on by this debilitating disease.I applied for an electric wheelchair through Medicare over a year ago and am finally getting this important equipment.Unfortunately, Medicaire is only paying a portion of the cost, leaving me with the remaining balance.At this point I no longer have savings and my monthly income will not cover this expense.I hope that you can help me with the remainder of the cost for this very necessary piece of medical equipment.Thank you.

I highlighted that first line for a reason..."I have MS".

After sitting for a few minutes to collect my thoughts and dry my tears, I immediately signed up to be a donor, electronically transferring a small stipend to this anonymous person. I now believe Divine Intervention brought me to this website and I was SUPPOSED to find this MSer's application. And now, I'm telling YOU about it.

Please understand I am NOT highlighting this experience as a means of receiving some sort of "kudos" or slap on the back for being a giving person...as a matter of fact, if you choose to comment on this post, I would request you leave OUT any references of that nature. We ALL do what we do when we need to do it.

Instead, I'm telling you about this site because I personally think it's a WONDERFUL grass roots means of giving. I'm also telling you about this site because it appears to be a WONDERFUL grass roots means of receiving. I know there are several who read CHEESE and have MS who are barely making ends meet...either because of medical costs, unemployment, Medicare falling short, or sudden illness/disability. And when we are IN desperate financial times, we sometimes forget it is OK to ask for help and to receive. If this description fits you, I encourage you to check out http://www.modestneeds.org/ and see if you might qualify for a "grant" to meet an immediate need.

There are also those of us with MS out here that remain gainfully employed and basically doing fine financially...and some of us are looking for more places to send our giving dollars to BESIDES the National MS Society. If this description fits YOU, give the site a looksee and decide if it is something you feel fits your giving needs.

Oh, and one last thing (for the perpetual skeptic and paranoid, such as myself)...I do not KNOW anyone from ModestNeeds.org...I have received no financial GAIN from writing this post...and I have no INVESTMENT in what you personally do with your time and money (or lack thereof)!

Sometimes it's just the *right* thing to do...

**HIGHLIGHT**
I just checked back on the ModestNeeds.org site less than 12 hours from my first discovery of it and the above mentioned "grant" for the person with MS needing the power chair HAS ALREADY BEEN GRANTED!!!! YEAH!!!!! What a great world we live in...
*****************************

**SECOND HIGHLIGHT**

Friday 8/8/08 PM

Once again, I just peeked in on the ModestNeeds.org site and found this "testimonial": August 08, 2008

Dear wonderful people who care,

I have waited 15 months to get the motorized wheelchair. I am touched by your donation and cannot thank you enough for your kindness and generosity. I have many difficult hours in a day but there are times like this when I feel blessed because of people out there willing to help when life gets tough.

With warm regards,

**Name deleted for privacy**

Now THAT is giving AND receiving in action!!!

**************************

The Bird House...

"Get down out of that tree before you fall and break your neck", she bellowed, having spotted me high among the branches of the old elm tree.

"Drat!" I thought. I hated when I could be tracked from the ground in my secluded treetops. These branches were my personal lookout tower...my refuge from the silly life of *humans* down below.

I begrudgingly began a very slow decent from my perch, deliberately pausing to notice any bug or bird that flew by. I knew better than to drop to the ground too slowly, however. Once mother beckoned, it was best to do as she instructed to avoid confrontation.

"I'm coming", I hollered out with just enough volume to seem convincing, as I gingerly scrambled down branches that recognized my frequent footpath. Completely downtrodden that I had been discovered, my special perch would have to be abandoned for now. As would the robin's nest and the baby birds I had been watching for the past few weeks. I knew if mother caught me up there that high again, I might be forbidden from climbing ANY trees...something I did almost every day. For now, I would not attract attention to my secret world of birds and bugs. The baby robins would just have to get along without me for the time being.

***

I grew up my youngest years in rural Nebraska on farm land, where glaciers had deposited rich, black soil ripe for tilling and cultivating. It is said that most of the trees in this area of the United States were brought in by early settlers, trying to make a life for themselves in otherwise flat open spaces...where winters raged and summers burned, finding shelter under a tree was a blessing.

My sisters, who were older than I, often referred to me as "the monkey", and NOT as a term of endearment. Because I was wiry, thin, and fast, they decided I had the shape of a monkey...and because I regularly climbed trees, the image was only perpetuated.

In the summer months, I was called to climb the cherry tree so that all of the precious, sour cherries could be harvested and pitted for pies. This was an accepted duty of mine and something I did not mind at all...I was the only one in my family agile and thin enough to scramble to the tops of the cherry trees and I prided myself in harvesting every last berry I could reach.

But in the spring...ah, the spring was MY season for bird watching and nest observation! I quickly grew to recognize the differences between a sparrow, a robin, and a turtle dove's nest...the typical nest-building birds in my area. I could identify the differences in their nests, their eggs, their fledglings, and their calls at a very young age. I often tried to mimic their behaviors by attempting to jump off tall structures to fly...to this day, I STILL believe I could fly if I could only get the flapping of my arms right!

Once, my oldest sister came into her bedroom and found me squatting on the metal frame of her bed...a bar that was approximately two inches in diameter and 3 feet off the ground. I had removed my shoes and socks and sat gripping the bar with my monkey toes, trying desperately to balance myself without falling. She asked me what I was doing and, at the time, I thought her question was quite silly. I explained to her I was practicing "perching"...this is still something I am teased about by my middle sister to this day. Sigh...

At some point in my childhood, I think my mother must have discovered my fascination with birds...I was so secretive as a child, or at least I THOUGHT I was...I had no idea she had caught on to the mysteries of my private world high above the ground. My mother could best be described as a quiet, but stern disciplinarian. She was usually too busy taking care of three daughters and working to find much time for spontaneous notions. But one day, she surprised me.

***

It was on a warm, spring day my mother called me from the yard to the front porch. I thought for certain I must be in trouble for something or there was a chore needing to be completed. Instead, she looked at me with somewhat of a grin and said, "How 'bout we build a bird house today?"

I stood on the cool cement in my bare feet stepping back and forth on my toes with the heel of the other foot. I had no idea what she was talking about because even I knew a bird house would require wood and probably nails and a saw...things that I knew were off limits to my touch in my father's garage.

What are we going to MAKE it out of?" I said, in somewhat disbelief, yet intrigued by the notion.

"Well, WOOD, silly", she replied in her own form of disbelief.

"Yeah, but we don't HAVE any", I argued in my nearly 10 year old voice.

"Of course we do", was all she said as she headed for the side of the house where the garage door stood safely hiding away the mystery belongings of my father's workshop. Now she had captured my full attention.

No one was allowed to use my father's things...not the neighbors, not his girls, and I had always assumed not even his wife. His tools were treated like prized possessions and he kept them under lock and key, fortressed away like gold at Fort Knox. She took the sacred garage key out of her pocket, turned the lock with it, and we entered the tabernacle of my father's workshop.

"Run back into the house and get my 'Ladies Home Journal' magazine off the kitchen countertop. We'll need it for the instructions," was all she said as she gazed around the poorly lit work area, which was filled with paint cans and ladders and woodworking tools.

I quickly hightailed it back into the house and grabbed the magazine from the kitchen with utter excitement. The "Ladies Home Journal" was my mother's bible...there MUST be something in it that had driven her to unlock that garage and risk the wrath of my father! Surely God must have spoken to her in the fine print.

I raced around the corner of the house clutching the magazine, exhilarated by my mother's new found freedom and daring...I could NOT, after all, be in trouble for entering my father's private temple if I was with HER. Yes, she'd be shouldering the blame for this one if there was punishment to be handed down. I presented the magazine to her as if it were sacred text and smiled up at her face. This was proving to be a delightful day after all.

My mother thumbed through the magazine until she found the section she was searching for and laid it out on a work bench, holding the pages down with two, quart cans of paint. She studied the page for a few minutes while I danced in place, waiting for my next instruction. And then she spoke again.

"OK, grab that piece of plywood over there and bring me your dad's hand saw from that shelf". She was suddenly very business-like and focused. I did as I was told, wondering for a fleeting moment if my father could possibly dust the saw for prints and somehow sentence me to hard labor for touching his tools...the thought passed quickly and, without hesitation, I became my mother's apprentice.

For several hours that day, we drew outlines and cut small pieces of plywood based on the diagrams in the "Ladies Home Journal". Once the pieces were evenly cut to match the drawings, we hammered and nailed each piece into what began to take the shape of a bird house. And then, to my complete amazement, my mother studies the many paint cans lining the garage shelf (my father was an interior/exterior painter by trade) and chose a bright, yellow paint, which we proceeded to brush onto our tiny, little building. The paint dried quickly in the afternoon sun and the bird house was ready to mount on the clothes line.

We eventually got our bird house securely fastened to the post of the clothes line and stood back to admire our work. It was now somewhere in the mid afternoon...we had become so engrossed in our project together, neither one of us had thought to pause to have lunch!

My mother stood beside me, looking up at the bird house, with smears of yellow paint across her fingers. She did not in the least bit seemed worried what my father might say when he discovered we had entered his workshop without invitation and used his tools with utter abandon. Instead she was smiling with what could only be interpreted as a look of accomplishment.

Without breaking her gaze at our beautiful, yellow bird house, she spoke. "There. Now you don't need to climb so high in the trees to watch the birds".

***

I miss climbing the trees...almost as much as I miss those rare, but wonderful times with my mother...

**NOTE**POSTED ORIGINALLY IN YELLOW PRINT, WHICH "BLINDERS OFF" WAS KIND ENOUGH TO LET ME KNOW COULD NOT BE READ! THANK YOU.

Here's A New One...

For the past couple of days, I've been experiencing a strange skin sensation...as if I have loose hairs or spider webs on my face and forearms/hands. At first, I thought it must just be some kind of dry skin issue, but lotion doesn't relieve it at all AND my skin is not dry. Then, I decided perhaps I have finally fallen off the deep end of the pool and I am experiencing tactile hallucinations. But the REST of my world seems status quo, so I don't "think" I've finally lost my last screw. There is nothing there...absolutely nothing to wipe off my arms/hands or my face (because I thought maybe I was just walking into spider webs routinely...I mean I DO try to keep my house clean, but...LOL) and it is the strangest sensation.

Anybody else experience this phenomenon? Come on...you can tell me. I won't think you're nuts (well, maybe a little)...

Open Season For Big PhRMA...

Occasionally I have the BoobTube on at my home, mindlessly playing in the background (OK...admittedly, I DO watch one or two programs of high-quality TV, like Judge Judy and Oprah...hehe). And today, I was actually WATCHING the noon news broadcast WITH the sound on (I prefer to make up my own headlines with the pictures, thus the sound OFF), when I noticed the barrage of commercials for research studies for depression, bipolar disorder, fibromyalgia, etc. There must have been at LEAST FIVE different commercials for varying disorders attempting to entice me to call a number (that is, IF I am a healthy individual between the ages of 18 - 55, OR if I am between the ages of 18 - 55 and SUFFER from one of these disorders) and donate my body to an "investigational study", aka DRUG RESEARCH PROGRAM. I took notice.

Now, before those of you currently IN MS drug study programs (or any other research program for that matter) start girding your loins for what I am about to type, remember THIS: I, too, participated in a MS DRUG research program back in 2005. That's right...I was given two infusions of a drug that rhymes with "BITE-UXIN". I have YET to receive any follow up from the pharmaceutical company or research facility that sponsored this study...I've also YET to receive any acknowledgement or confirmation that the "BITE-UXIN" medication I may or may not have received caused me to develop severe hypertension AND my MS actually WORSENED during this study...which led to being exited from the study, a change in neurologists, and being started on a new MS medication. Hmmm...I imagine my participation data just didn't make it into the final figures as it was FAR from positive. But, anyway...

I was enticed into the above study/research program by my neurologist at the time due to failed responses from two other MS medications. It seemed like a good idea...it even felt slightly altruistic. I could donate my "body and my health" to MS study AND maybe receive a personal benefit of slowed disease progression from the drug to boot! Who wouldn't go along with THAT idea?!? Of note: I also remained gainfully employed, had more insurance coverage than God (which I still do), and had little to lose other than time and possible progression of my disease...which the LATTER could occur anyway, with or without drugs or studies. I'd like to think of myself as the PERFECT candidate for drug research, if I do say so myself. And, the study PAID ME NOTHING for my participation, except free MRI's and labwork and "maybe" "BITE-UXIN" or "maybe" not...good times, good times.

Now, back to the TV ads. What bothers me greatly about these new TV ads is my concern the pharmaceutical companies are now PAYING a bit of cash out to participants. That's right..."if" you qualify, "you could receive up to $1500for your time and travel expenses, and the cost of the medication is free".

OK...again...before anyone stoops so low as to think at this juncture I am DEFENDING Big PhRMA, PULEEZE! There's just something about the noticable increase in these drug study ads and the PAYMENTS now attached that smells stronger than Puget Sound floating with dead fish. I mean, why so many drug studies right NOW? Why not, say a year or two ago...BEFORE THE UNITED STATES ECONOMY WAS SINKING FASTER THAN THE TITANIC? Before people's houses were being foreclosed upon at a rate faster than in the past 20 years? Before there were so many citizens having to choose between buying a gallon of over-priced gasoline OR pay their rent? Before the unemployment rate reached the highest level than we've seen in years? BEFORE PEOPLE WEREN'T SO DESPERATE TO MAKE $1500 DOLLARS BY SELLING THEIR BODY TO A PHARMACEUTICAL COMPANY FOR RESEARCH JUST TO MAKE ENDS MEET???

I dunno...I know I suffer from a lack of faith (and a paranoid personality), but something just smells awfully fishy about the sudden influx of all of these study ads and their financial enticements. And I'm afraid Big PhRMA has recognized, for just a few bucks, it can be open season hunting for study participants anxious to pay their bills in our current economy.

Personally, I think the pharmaceutical companies SHOULD pay their participants in some way. So how about FREE HEALTH CARE paid for by the sponsoring pharmaceutical company for the rest of my life just for taking the risk the study drugs might potentially eff me up????

Yeah, that sounds like a fair trade...

Sometimes, I Cry...

I rarely talk about my job in this blog. That's because federal laws prohibit me from disclosing details of my interactions with the patients I see and it is in extremely poor taste to publicly discuss another person's pain when they are in a most vulnerable place. I also rarely ever discuss the impact my job has on ME, unless it is to bemoan my long hours or some silly condition/problem such as the enormous paperwork load attached to my employment.

Most everyone who has read CHEESE for any length of time, knows what I do for a living: I work within the title of a "Commitment Specialist", regularly doing psychological evaluations with individuals and making legal decisions whether or not they meet my state's criteria for psychiatric commitment. I am a government employee or *civil servant* and I am paid via my state's tax dollars. I work in a unique brand of emergency services, unlike any other in the remaining 49 states. My job involves "crisis services" to the mentally ill in my county and I am called to respond to a vast variety of tense and stressful situations involving mental health crises...sometimes even potentially violent situations, armed only with common sense, my voice, and a cell phone to call for help. I often work nearly 10 hour days, 4 days a week, in an unusual patterning of hours, which can include ANY set of hours in a 24 hour period. I am called to respond to hospitals, homes, shelters, the streets, the airport, police stations, the jail, and any other physical location there is a mental health crisis within the boundaries of my county.

My job requires me to *investigate*, much like a police officer investigates a crime, to uncover what (if any) symptoms of a mental disorder a patient may be experiencing and how (if any) those symptoms are creating an imminent risk to either the patient, others, or someone else's property. I am not allowed by the court to "predict" a patient's behavior, but rather I am called to establish "probable cause" for risk. I must make my decisions whether or not to revoke a patient's civil rights and take them into custody based on evidence and my years of experience working with the mentally ill...I am asked to establish for the court a pattern of symptoms and behaviors that establishes probable cause that a patient is at risk of harm.

So, why am I telling you this? I suppose it is a means of explaining to you what I am exposed to on a daily basis and why I sometimes cry.

My job is *technically* quite easy...give or take about ten legal forms that must be filled out whenever I take a person into custody and place them in a locked psychiatric facility for evaluation and treatment...and the numerous other pieces of documentation that must accompany my court forms. Revoking someone's civil rights...the ACT of doing so...is as simple as a "yes" or "no" decision. The decision itself is not why I sometimes cry. The stress of my job...going from crisis to crisis...is not why I sometimes cry. The hours of my job and the physical demands of my job are not why I sometimes cry.

I sometimes cry because everyday in my job I stare down the face of human suffering. I sit or stand next to someone who may be teetering on the emotional edge of life or death...who's pain is so intense or so great, they see no other options than suicide. I quietly observe the lives stolen by raging mental illness...souls lost in a world of fear and hallucinations and delusional thinking and unrest. I stand beside those society sometimes deems as "throw aways"...covered in street grime or their own urine or with hair matted to their foreheads or covered in self-inflicted physical scars. I hold a place for those that call me horrible names or spit at me or threaten to harm me because the voices in their minds tell them I am not safe and neither is the world they live in. I have smelled every foul, human smell that exists and I have stood in every bodily fluid we humans excrete...smells and fluids left in the wake of emotional disturbance. I have watched lives lost to unknown worlds within the human mind and I have been witness to lives taken by human hands. It is my *job* to bear witness to this human suffering. And it is this very human suffering that is often the catalyst behind my sometimes tears.

People familiar with my work often ask me, "Why do you do what you do? Wouldn't your life...your WORK...be so much easier behind a computer screen or at a desk?"

What is difficult for me to explain to these people is the fact that I love my work...and I wouldn't want to trade it for the simplicity...the monotony of a desk in an office somewhere. Because it is through my work I truly believe I am given the closest proximity I will ever find to reach out and touch the human spirit...something few people are ever given the opportunity to touch. Something many are too frightened to place their hands in...to be honed by the fire of the human spirit. I am both honored and humbled to bear witness to another's vulnerability...and I hold this vulnerability in sacred space.

Sometimes I cry because I feel overwhelmed with sadness and grief as I recognize so acutely what has been lost in a person...and what can never be. And I see their pain as they struggle to accept or acknowledge that this IS their life...perhaps with a means of making changes via medications or therapy or other behavior modifications. But sometimes, these usually viable solutions are not possible. And having to be the bearer of this sad reality to family or friends or concerned love ones feels as if I am the Grim Reaper...I am providing a death sentence to someone who must now live the rest of their life with it.

Sometimes I cry because I become overwhelmed by the vastness of this human experience...because the depth is both breathtaking and dizzying at the same time. And because sometimes, the depth of human suffering has no noticeable bottom. It is as if I am staring into a great abyss...as if God, herself, has granted me the opportunity to be a part of something far greater than myself that I can neither understand nor explain. And it is through this extreme place of fragility and vulnerability a small grain of strength is uncovered in another human being...a grain of truth that, when discovered, grows and produces lasting strength that they will hopefully carry for their lifetime.


Sometimes I cry because my OWN body and spirit require an emotional cleansing...a washing away of the many things I see in my job and a cleaning of my mental slate. It is through my tears my OWN spirit is nourished and its thirst is quenched. I am reminded through my tears that, but for the grace of God go I...that I am no different than the patients I serve...that I, too, am both vulnerable and strong...susceptible to disease and suffering and hardship. I am reminded through my tears that I must rise each day and go to my job, as if it may be the last day I am granted such a privilege, and I must take full advantage of ALL that life has to offer me in this day. It is through my tears I often find my own strength and peace.

Sometimes I cry...and each time, I thank my Maker that I still CAN shed tears...

They're Finally Gone...

Four days of earth-shaking, sonic booming, noise of the Blue Angels flying and dive bombing over my house is just about all I can take. Thank goodness SeaFair has ended today...I think the constant roar of the fighter jet engines zipping just above tree line at my home has taken a life or two from my poor, little feline's 9 count.It's official...I've turned into my mother. I'm no longer fascinated by noise and speed and daredevil stunts. Unless, of course, I'm driving...

We're All Going To Die Of Something...

It's a fact of LIFE...DEATH, not unlike BIRTH, is part of this lovely hamster wheel we all run upon until our feet no longer can spin the metal frame in our cage. Just like Elton John sings in the Disney Movie, "The Lion King", it's the *circle of life*...yet somehow, in cute, little animated characters, we think this "circle" only celebrates the first two stations of the wheel: Birth and Life. Rarely do we celebrate or look toward the third station...DEATH. It's a phenomenon I just don't get in our culture.

So, "why?", you ask am I blogging today about DEATH? Good question and my reasoning is two-fold. First of all, a dear friend of mine just experienced the death of her brother-in-law while ON the phone with her sister...he literally died while she was discussing the "what to do" as medical professionals were requesting guidance...to cease CPR or continue. What a horrible phone call to have to take. But I know my friend has a deep spiritual center and she will celebrate the "circle of life" once the shock of the phone call/event has lessened.

My second (and far more personal to me) reason DEATH has been on my mind these past few days has stemmed from reading the myriad of reports swirling around the Ethernet regarding the most recent cases of PML associated with TYSABRI use in Multiple Sclerosis...the MS drug I am currently taking, as are about 32,000 other MSers world-wide. If you'd like a FACTUAL account of the two recently reported cases, I suggest you go to Sunshine And Moonlight Blog and read Kim's post...it's straight from the press release.

In case you have not been keeping up with your medical journal and research reading (because that's all any of us with MS have time to do...read crap!), just this past week, two MS patients in Europe have received definitive diagnoses of PML...Progressive Multifocal Leukoencephalopathy (that's a Wikipedia link...because I love them so), which is thought to be related to their use of TYSABRI. They are both males, were both on TYSABRI for over a year, and are BOTH very much alive at this point. It seems plasma exchange may be the new sheriff in town where the PML bandit lives, and PML "may" now have a reasonable treatment...eliminating what was once thought to be a death sentence among AIDS patients and other immunosuppressed individuals...those folks that developed PML from their compromised immune systems LONG before PML was ever connected to TYSABRI.

Oops...there's that word again...DEATH. I sometimes lurk on various MS message boards (and I DO peruse a LOT of MS blogs, but not always leaving comments because I get sick of hearing what I have to say, so I KNOW other bloggers must too) and the SWIRL of activity regarding MS, Tysabri, and PML is generating enough energy to power a third world country. It seems there are two very distinct sides in the conversations: those who are adamantly AGAINST Tysabri use and those who are adamantly FOR Tysabri use in Multiple Sclerosis treatment. Personally, I believe anytime someone is "ADAMANT" about anything, they are probably missing a large portion of a bigger picture...like the OTHER SIDE OF THE CONVERSATION! And I am *adamant* about this...LOL

My thoughts/feelings about TYSABRI use are specific only to ME...which my life is all about...ME. And what I have to weigh out when deciding what drug (if any) I am willing to take is the "cost" of the treatment...and I'm not specifically talking about monetary issues here, although that can be a factor. I'm talking about weighing the benefits versus the risks...because, let's face it, folks...unless you are wearing blinders on your eyes and soul, ABSOLUTELY ALL WESTERN MEDICATIONS COME WITH RISK FACTORS. Even Aspirin can kill people.

Every day I am bombarded with new studies or "facts" (I use that term loosely because, more often than not, "facts" change throughout the course of time) about how this food or that drug or this activity or lack of activity can increase or decrease my risk of premature or even mature death. I've never understood THAT concept either..."premature death"...since we're all on the big chalkboard of life to be crossed out at some point, how do we KNOW our death is "premature"?!? What if it just WAS our time to go because we chose to live a certain way with the set of circumstances we were born with? I don't know...this "fact" confuses me. But I digress...

And every day...I mean EVERY DAY...I make conscious and unconscious decisions on how to live my life from the moment my fat, little eyelids open after my 4-5 hour nap, which most people refer to as "a night's sleep". I base these decisions on what information is available to me at the time, my inner *wisdom*, and of course, my MAGIC EIGHT BALL...sometimes substituting the ball for a pair of dice. Every day my eyelids are open, I understand this day...I mean THIS DAY...could be my last one in which I spin my hamster wheel. Prematurely or not...THIS DAY, death could come a knockin' and slap me right out of my wheel...thus completing my personal circle of life. So be it. This is life, folks...risks and benefits.

Biogen Idec/Elan Corporation publishes a 1:1,000 ratio of developing PML with TYSABRI use NOT with concurrent use of other immunosuppressants...they believe the risk may be higher if other immunosuppressants are given during the use of TYSABRI. To the Federal Drug Administration, this is a reasonable ratio...there is always a risk ANYTHING can kill or maim us...including aspirin...and there are MANY, MANY other pharmaceuticals on the market besides TYSABRI that have a much higher ratio/risk of death or development of other diseases that can cause death. These are the "facts" (which WILL change over time...trust me...I play a doctor on the Internet...LOL) of which I base my TYSABRI use decisions upon.

But those "facts" are just a small portion of the information I take in regarding MY use of the drug (and again, before those of you ADAMANTLY against TYSABRI use fire off your hate mail telling me I must somehow be the anti-Christ of MS, remember this is MY circle of life...not yours!). Those are the *risk facts*...flipping to that other side of the coin are the *benefit facts*.

Now, here lies the big unknown for me...the BENEFITS...and this is a much more murky pool I swim in. My TYSABRI use came about by a process of elimination (no, I'm not talking about toilet habits here). You see, I have TRIED all of the other MS disease-modifying agents available and, for one reason or another, the meds didn't work, didn't fit my lifestyle, or had side effects that were worse than my own brand of Multiple Sclerosis. TYSABRI simply became the next new kid on the block for me after the use of Novantrone for a year FAILED to curb my MS enthusiasm in my brain...got the pictures to prove it, so I suppose that makes it a "fact"...hehe.

Do I have any FACTS that TYSABRI is of benefit to me at this point in my use, having just received my 4th series dose (but 8th lifetime dose)? Nope, not a damn one. But, then again, I don't have any FACTS that it is HARMING me either. That's the beauty/curse of MS...the disease rarely shows its hand and only through symptoms and MRI can ANY of us gauge where our MS is taking us. SOOOO, since I have no FACTS that the drug is harming me at this juncture and my MS symptoms appear to be stabilizing externally, I continue to consent to take TYSABRI...even in the wake of the latest PML reports in Europe.

Am I willing to *risk* that 1:1,000 possibility of developing PML myself? You betcha! Just like I'm willing to risk getting in my car every day and driving in a United States population estimated to be somewhere around 304,771,000 with a 2005 vehicle fatality rate nationwide of 43,200. You do the math here...that's an approximate (I never was good at math and I am rounding figures...bite me!) 1 in 7,088 risk. AND that population figure is NOT actual vehicles and eligible drivers in the USA! The *risk* I might die in a vehicle fatality rises GINORMOUSLY when one subtracts out from the census all the folks in the United States who do not drive...which, of course, I do not have figures for (must be classified information by our government as we would not want terrorists to know how many of us drive in the USA!). So, since I live in Seattle on the West Coast where it appears drivers obtained their driver's education from NASCAR, I'm guesstimating my chances of dying in a motor vehicle accident HERE are about 1:1,000. I imagine the difference between death from a motor vehicle accident or death from developing PML is simply the *fact* one will hopefully KILL me faster than the other.

And here I come full circle once again on my personal hamster wheel. I'm gonna die of SOMETHING...that's a *fact*. Details of this event are yet to follow...or at least the details of my death as I type are currently unknown to me (unless YOU know something you're not TELLING ME?!?). It is frankly not important to me at all how I "go" or how DEATH comes and slaps me off my metal wheel and leaves me motionless in the cedar chips at the bottom of my cage.

What IS important to me is how much I LEARN and how much I LOVE as I put one foot in front of the other and spin my wheel...all the while the Circle of Life spins around me. Because when I finally meet my Maker, I truly believe I will be asked, "How much did you learn and how much did you love in your lifetime?"...I just don't think I'm going to be chastised or made fun of because I chose to accept the *risk* of 1:1,000 and take TYSABRI for my MS OR for driving my car...