Work(s) in Progress

Short Takes

I think twitter and text messaging are training me to think and communicate in short bursts of thought.

I recently heard a DC journalist say that if you couldn't capture the audience with your story or message in 25 words they would just tune out. I'm not sure what that says about our nation's ability to maintain a meaningful dialog on complex topics.

I'm looking forward to Clay Lowe's book - A thousand bullets gone astray when I can get it in the USA.

I'm wondering when we begin to associate connotations with the images with see. My life was fairly uncensored as a child. And while I now view many images or situations as having a moral (good/bad) connotation, I know that early on that all images were neutral in my brain. Sunny day = Pithed Frog = Crucified Man = Sleeping Puppies. I don't know whether this is because I saw A Clockwork Orange when I was six or whether I was just a late bloomer in terms of developing empathy.

I was supposed to attend the annual GCEC (global consortium of entrepreneurship centers) meeting at Rice. The meeting program looked amazing. I had everything lined up. I'd even pre-printed my boarding pass for my flight. And then I drove myself to the Emergency Room at 2:30AM when I got slammed by the flu. Since I had an annual flu shot, it was perhaps H1N1. My local ER was no longer testing as the test results had no bearing on treatment - (just not cost effective). I'm not sure how this impacts the H1N1 maps you can find online. In my case 4 days of fever, mostly GI symptoms, 2 bags of IV saline and various medications. During the worst of it, I think I slept 36 hours during a 48 hour period. Not fun.

Today is the one year anniversary of the judge signing my divorce decree. It is also the one year anniversary of getting my tubes tied. Two major life changes in one day. No regrets.

Next week, I'm having Lasik  done. My heart is racing just thinking about it. It took me years to even work up the courage to switch from glasses to contact lenses. I did my evaluation visit yesterday (at Spivack) to see if I was a good candidate. Aside from dry eyes (it is Colorado), everything looks good. They have patient "counselors" who help with scheduling, financing and also hand-holding as I heard the doctor tell my counselor in a hushed voice "she is very frightened" as in "hold her hand but close the deal." There are two doctors at this office who do the Lasik surgeries. One is substantially cheaper. I understand wanting generic or discount on prescription drugs or routine doctor visits but on EYE SURGERY?! Give me the rockstar please.

I went to Get Motivated! again this year as I did in 2006. Unlike 2006, I did not attend the entire event. My assistant and I heard Robert Schuller, Laura Bush, Colin Powell (why I bought tickets), Phil Town (I love Rule #1), and Tamara Lowe (one of the founders of Get Motivated). While I remembered that the 2006 event had a "God Bless America" theme and "seemed to use some cult-like techniques to capture the audience" I did not remember all of the "take Jesus as your savior" rhetoric that occurred this year and caused me to leave.

Tamara Lowe has now written a book, Get Motivated!: Overcome Any Obstacle, Achieve Any Goal, and Accelerate Your Success with Motivational DNA, the focus of which she presented. It seemed like a useful tool for determining how to best motivate yourself and others. However, her presentation then veered into the surreal starting with a religious rap. To best share the experience, I will quote a review from Amazon.com " I was then teletransported to another dimension and I'm suddenly at a Christian Convention. A big old Jesus-fest. To the point that she asks us (if we want to to be anything in this world and not go to hell thereafter) to each silently affirm that we each need Jesus in our hearts and need to reconnect with our love for Him. Huh? I check my ticket and it is still proclaiming to be a business seminar. I look at my employee, who is Jewish, and she is staring painstakingly at the floor. I mouth, "I'm SO Sorry" and she gives me an uncomfortable nod. It made me pretty angry that at a business seminar with nationally acclaimed speakers, she would be so presumptive as to assume that the 10,000 people in the room not only agree with her beliefs, but cares what she thinks on the topic. It was a total insult to the professionals who follow other faiths or belief systems and mind their own business about it. No wonder half the world thinks we're arrogant and disrespectful of their religious beliefs." Yeah. What S/he said.

In spite of this, Laura Bush was charming, someone with whom you'd want to have tea or a glass of wine; Colin Powell was as inspiring as I'd remembered; and, I will most likely buy Phil Town's new book which is coming out in March 2010: Payback Time: Eight Steps to Outsmarting the System That Failed You and Getting Your Investments Back on Track.

I'm finally planning my trip to Hawaii. Smiling just thinking about it.

 

10+ years of ALS research

I am looking backwards today. I moved to Colorado with my first husband in 1995. I've been thinking of him recently. It was his birthday on Saturday (Happy Birthday rb).  A friend of mine is making a video for his son's wedding and I recommended that he use a song from when I married this former husband of mine, Chet Atkins & Suzy Bogguss, "you bring out the best in me." (you can play it here.) And no, this song is NOT jinxed or unlucky. My ex sent me a note today that reminded me that even though we've been divorced now for almost 10 years, he continues to inspire me to be the best I can be. His email is a post for another day. Today I have ALS (amyotrophic lateral sclerosis; Lou Gehrig's disease) on my mind.

When I've taught students about ALS, I generally have had them read a few posts from BrainHell - a wonderful first person account of experiencing ALS from diagnosis until death. I'm often asked why Stephen Hawking is still alive if he has ALS. Um, not exactly ALS, more likely a variant motor neuron disease know as spinal muscular atrophy type IV.

I started working on ALS in 1995. Soon after I established my own laboratory a few years later, or perhaps before, I met Ian Pearson who had recently been diagnosed with ALS. Unlike the majority of people with this diagnosis Ian has lived with this disease for many years. Tonight I received a number of emails from Ian about his current plight and changes to the Colorado Health Care system that may cut his life short. For this reason, I am going to copy his various emails into this post in their entirety. Please contact me if you would like Ian's contact information (it's the only thing I'm going to redact).

One of Ian's emails ended with this post script "The preceding text has been written using Ez-keys by Words plus, a communication program for people with physical disabilities. I use switch scanning and a piezoelectric sensor switch, mounted on a headband and activated with my eyebrow muscles. This document took roughly 40 hours to write. "

In my mind, the most horrible thing about ALS is the LACK of cognitive loss. Imagine, your brain is working perfectly; you cannot talk; you cannot move; if you are lucky, you might be able to blink or move an eyebrow that manages a cursor on a computer screen. Imagine now a decade of this. As you are thinking of these things, I ask you now to read Ian's letters.

Thank you.

May 12, 2009

Dear friends, family and other worthy souls,

For those of you who didn't already know, on Monday April 27, one of the local TV news stations ran a short piece about a change in Colorado Medicaid reimbursement policy that has effectively ended the program under which the facility where I live operates. If I have to go out to a hospital for an extended stay, I won't be allowed to return to where I have lived for more than the last five years and my only option for health care to stay alive. If the policy isn't reversed the entire program will end on July 1, 2010 and I will have to find a new place to live, possibly outside Colorado.

Here is a link to the story written out with the video on the top right corner: http://cbs4denver.com/health/medicaid.problems.patients.2.995937.html  

Below is my reply to the reporter who did the story. As you can read, I was very disappointed and frustrated with all that wasn't said and the missed opportunities of the piece. I've also attached the letter that I wrote back in March to the policy makers and affected parties. It explains the problem and gives my perspective on the situation. On March 10, a patients' father here, Doug Paris (in the video), held a meeting that he organized, to call attention to this critically important issue. He invited representatives from the state Medicaid board, hospitals, nursing homes, the media, local politicians and family members. That is how the TV news got involved. My letter was distributed at that meeting, the initial interviews were conducted (including with Kate), and Kate recommended that the reporter interview me. Unfortunately the reporter showed up without notice so I didn't have time to prepare anything to say (it takes a long time to write anything using my eyebrow).

I have a lot of things going on right now but I wanted to get the word out about this. I may follow this with information how you can help. I just got word today that the HCPF board is reviewing the financial statements from the two HBU facilities in Colorado. I am drafting a letter to the HCPF board to emphasize the key points against this flawed policy and may solicit your help to write your own versions of request that they reverse their Medicaid reimbursement policy for the HBU program. Please stay tuned for more information. Thank you for your interest, support and possible activism.

Thankful for all I've got and not letting it go without a fight,

Ian

April 30, 2009 (letter to the reporter Rick Sallinger)

Dear Mr. Sallinger,

Thank you for your efforts. However, for all of the time elapsed and information that was provided and available to you, I was very disappointed in your finished product. Perhaps your piece is just reflective of the sad devolution of television news into its current state of info-tainment. Both local and national coverage is light on useful information and heavy on sensationalism and triviality. In that vein, I thought that your piece was pretty thin on providing useful information; just a sympathy story with no sense of outrage. In general it's true that there is less substantive material to fill a local broadcast than national coverage but in this case, a paucity of substantive information wasn't the problem. This Medicaid reimbursement issue is somewhat complex and multi-dimensional but you missed providing the most critical information. Given that there is such limited material to fill the daily broadcast, the viewers' attention spans are brief and individual stories don't exceed 4 or 5 minutes; I think that you could have developed this story into a multi part series. Each episode could have examined one specific aspect; the historic context and nature of the issue (what was the motivation and justification for the State's policy change?), the personal impacts (as your piece focused) and the actions and consequences of the new State policy and the future implications.

The State HCPF is acting irresponsibly. The bottom line is that the State prematurely made an unnecessary policy change that is ethically, logistically and fiscally unsound. Colorado is effectively trying to save money by exporting and pawning off this patient population on other states. ALL of the affected parties including hospitals, nursing homes, the two existing hospital back up facilities and families/patients are unanimously opposed to it.

If you're going to condense the rather involved and complex issue down to a three minute piece, you have to chose a specific focus. Quite predictably, you chose the "Look at those poor people" track. Unfortunately this approach left out the most important points to communicate;

1) it didn't accurately describe the problem,

2) it didn't state that HCPF has changed the policy to save money without first reviewing with prospective new care providers (there aren't any) to determine whether the new plan was logistically possible (it isn't achievable, and a small pilot program would have revealed that) and,

3) no evaluation of the actual financial consequences was planned or conducted.

It didn't explain that people will be forced to go out of state BECAUSE the only two facilities in Colorado now with the remaining patients won't and can't afford to operate under the fixed rate schedule. The State's proposed alternative is to send us to nursing homes (none of which accept vented patients). The consequences are already being seen as patients who would normally go into the hospital back up program are stacking up in area hospitals, in some cases in ICUs (because their only vents and qualified staff are there), and racking up much greater expenses and consuming critical care staffing and resources unnecessarily. Someone has to be paying for these greater expenses. How are the hospitals passing through these costs? Don't they have enough of a financial stake to lead this fight with a PR blitz, if not with a legal suit?

This was the whole reason why the Hospital Back Up (HBU) program was established; to provide specialized care units for long term patients on ventilators with minimized costs and maximized efficiency. Only full service hospitals are capable of providing the same level of required care but at much greater cost. The two facilities in Colorado with HBU units operate on very thin financial margins. The imposition of a fixed rate reimbursement schedule (rather than being reimbursed for per patient operational expenses with all of the statutory Medicaid restrictions) is shutting down the HBU program without providing an alternative. The fixed rate reimbursement schedule was developed for Medicaid patients in nursing homes and doesn't take into account the additional expense of long term full time respiratory care of ventilator dependent patients.

Another dirty little secret about the HBU program is the demand for HBU beds exceeds the capacity of the two Colorado HBU facilities. Both facilities had waiting lists under cost basis reimbursement. The fact that there were no other HBU facilities operating prior to the State's policy change demonstrates that even cost basis Medicaid reimbursement isn't profitable. The two programs were established when governmental compensation more closely coincided with operational expenses and remain as vestiges of that time. It's shameful enough that Colorado has left it to market forces and a grossly inadequate state managed Medicaid program to care for a small vulnerable patient population with no other alternative for medical care. In a 2007 study by Public Citizen that evaluated Medicaid as administered by each state, Colorado was ranked 43rd overall. The individual ranks of the four parameters: eligibility, scope of services, quality of care and reimbursement were 41st, 40th, 42nd and 21st, respectively (p. 58, Unsettling Scores: A Ranking of State Medicaid Programs (2007), http://www2.citizen.org/hrg/medicaid/assets/reports/2007UnsettlingScores.pdf). The summary noted that the low Quality of Care score was attributable to very low quality nursing home care and very low rates of childhood immunization. The relatively moderate Reimbursement score was calculated from all providers under Medicaid (of which, the HBU program is too insignificant to affect an overall reimbursement score). It's worth noting that this assessment was done before the current economic crisis and state budgetary limitations. The effective elimination of the HBU program defies belief on the basis of ethics, responsible governance, viable logistics and intelligent fiscal management.

I will use the video of your piece with substantial supplementary information in an e-mail PR campaign to my personal and professional contacts to barrage the HCPF representatives with calls and e-mails until they see their wayward ways. I only wish that your reporting had more substance, carried a sense of outrage for bad governance and a message and vehicle for social activism to a much larger audience. I suppose that was too much to expect but for a man in my position, eternal optimism is standard operating procedure and, ultimately, I've learned to be my own best advocate.

Most sincerely,

Ian Pearson

March 8, 2009 (ironically my Birthday)

To all concerned,

Background I have been a Hospital Back Up (HBU) patient of the Skilled Nursing Facility (SNF) Unit at North Valley Hospital (recently renamed with the oxymoronic pleonasm, Vista View Care Center) since April 2004. Prior to coming here, I was resident at three other hospital facilities during the preceding eleven months. Over the last nearly six years I have come to a clear understanding of what is required to keep me (and others who require a comparable level of medical care) alive with an acceptable quality of life. I am writing this letter so that those who are making changes to the Medicaid reimbursement policy for facilities like this one better understand those medical requirements and the inevitable impacts of those policy changes. I am also writing to all other interested parties who may be able to influence and affect change to reverse this policy decision.

The Reimbursement Issue

The Colorado Department of Health Care Policy and Financing (HCPF) reduced reimbursement for new HBU patients, effective October 1, 2008. Existing patients were granted an exemption to the reimbursement change until July 1, 2010. The essence of the change is that reimbursement will now be made according to a fixed rate fee schedule rather than the existing restricted cost basis.

Historic Context and Existing Conditions

In order to understand the impacts of a reduced reimbursement one must understand the historic and current conditions under the cost basis reimbursement status.

For years, the SNF Unit here had been operated at a financial loss because of restrictions of Medicaid reimbursement, even under a cost basis, didn’t fully cover operational expenses. The hospital had other facilities that had a sufficient profit so that the extra cost of the SNF Unit was offset enough to be deemed acceptable. This mode of operation provided higher staffing levels, more auxiliary patient services (full time psychologist on staff, a comprehensive speech therapy department with an assistive technology program, a comprehensive and personalized physical therapy program and facilities, etc.), more frequent restorative therapy and showers and a more extensive recreation program than exist now.

After Vibra Healthcare purchased the hospital they fired many employees and closed or greatly reduced entire departments and facilities. Under this mode of operation the financially losing SNF Unit became a greater financial liability. In 2007 Vibra managers announced that they intended to close the SNF Unit, citing the financial burden. They later reversed their decision to close the SNF Unit and implemented a cost cutting strategic operation. Because the auxiliary patient services were already gone, cost savings were realized by increasing patient to staff ratios with reductions in Certified Nursing Assistants (CNAs), nurses and Respiratory Therapists (RTs) on all shifts. In addition, efforts were made to keep the patient population at capacity to minimize marginal costs and maintain more profitable economies of scale.

With fewer staff caring for more patients, stresses upon staff and patients increased and safely margins were reduced. Nurses were routinely required to care for 8 or 9 patients (many with complex, transient and extensive medical needs), CNAs, responsible for 10 to 12 and RTs, for12 to 14. Safe and reasonable patient to staff ratios should be roughly half these numbers for patients who require this level of care (and were under the previous management). Staff turnover required a greater reliance upon temporary agency staff, who individually vary considerably in competency and efficiency, and added to safety concerns.

After the announcement of the HCPF policy change, the Vista View management announced that they would no longer accept any new HBU patients under the new reimbursement protocol. In order to keep the SNF Unit filled to capacity, they began admitting patients with funding sources other than Medicaid. These patients have a wide variety of medical needs, often more complex and extensive than HBU patients and some have dementia, are belligerent or violent, or have other psychiatric issues. These conditions further tax the capabilities and resources of the already overworked staff and take them away from their regular responsibilities. There have been several instances when many, and sometimes all, staff on the unit have had to restrain one patient; on occasion, for up to an hour. During these times, the floor is left severely compromised, if not completely unattended. In addition, these patients have a high rate of turnover, adding a greater burden for nurses with frequent admissions and discharges.

Implications of Reduced Reimbursement

Even before the admission of non-HBU patients to the SNF Unit began, the staffing levels were marginally adequate. I can’t envision any scenario in which a facility could provide safe and adequate medical care to ventilator dependent HBU patients with less funding than under restricted cost basis reimbursement. There are no excesses to reduce or eliminate. If an established facility like Vista View, with well trained and experienced staff, isn’t willing or able to provide care to HBU patients with reduced reimbursement, what facility can? Nursing homes aren’t capable and regular hospitals don’t want us.

A handful of patients who have been discharged from here to facilities not oriented toward caring for HBU patients provide a vision of the future under the reduced reimbursement. All of these patients DIED within three months of leaving here. Lower staffing levels, less experienced and knowledgeable staff and the lack of full time RTs all contributed to the deaths.

Even if HBU patients don’t die within months of being transferred to a different facility under reduced reimbursement, our life expectancies and quality of life will definitely be diminished. What will be cut or reduced from existing programs like at Vista View? The only other facilities that are equipped to provide a comparable level of care are fully staffed/equipped regular hospitals. Operational expenses are much higher at hospitals and they aren’t set up for long term residency. That is why and how HBU units like at Vista View were established.

Personal Profile and Conclusions

I was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, at age 34. My wife and I were basking in the joy of the arrival of our second child,, born just five months before. I was steadily progressing in my career as a hydrogeologist at a small engineering and consulting firm in Denver. I had worked as a carpenter before attending graduate school and earning my Master’s degree. I was an endurance athlete and had always been very physically and intellectually active and had boundless energy and stamina.

I worked for another two years until the progression of physical disability forced me to retire. My illness put a tremendous physical and emotional burden on my wife and family as my wife cared for me at home.

In May 2003 a bad chest cold sent me to the emergency room where I conveniently went into respiratory distress with a blocked airway (if it had happened anywhere else, I would have suffocated). The next day I was given the choice of having a tracheostomy and going on a ventilator or doing nothing and likely dying within a week. I chose to stay alive.

In order to qualify for Medicaid and pay for my care, we sold our home, property and material assets, liquidated our savings and investments and my wife and children moved in with her parents. I am now almost completely paralyzed, confined to bed and am on a ventilator full time. The transformation to my current condition has been extremely difficult and I know that few people would be capable of following a similar path. I accept the life that I have now and maintain a positive attitude. I continue writing my life story and thoughts and beliefs that I want to convey to my children. I want to watch them grow up and leave them an enduring legacy of love and strength. I remain confident in my resolve to live for as long as I can keep having a positive impact in the lives of others.

I have fought too long and hard and my family has sacrificed too much for me to let a bureaucratic policy change lead to my final demise. I know what is required for my care. This reduction of Medicaid reimbursement can only lead to a reduction in the quality of care which has already been cut to marginally adequate levels here and now.

ALS is a relatively rare disease with no known cause, treatment or cure. The likelihood that anyone will get, much less, survive as long as I have with, a rare debilitating disease and would require the level of medical care that I receive, is very low. However, there are many things that can happen to anyone that would put them in a similar situation; paralyzed and on a ventilator, if they wanted to continue living. Just consider that YOU are one bad lane change, one infected wound, one mosquito bite (i.e. West Nile virus), or any variety of accidents, diagnoses or infections away from living like me. What will become of other Coloradoans who meet such a fate? Will the State subject them to a de facto death sentence by committing them to an inadequate health care facility? If not that severe, what quality of life will those people have?

I understand the motivations of the state Medicaid administrators to find all reasonable ways to reduce costs during these difficult economic times. I can’t understand how anyone could impose a policy change, regardless of motivation, without a clear understanding of the full financial, logistical and social ramifications. Furthermore, if, in this case, the policy change is made with knowledge of those impacts, I believe that its time to examine the ethical and moral standards that allow a small vulnerable population to be dangerously compromised for the sake of relatively modest cost savings.

Most sincerely,

Ian Pearson

The preceding text has been written using Ez-keys by Words plus, a communication program for people with physical disabilities. I use switch scanning and a piezoelectric sensor switch, mounted on a headband and activated with my eyebrow muscles. This document took roughly 40 hours to write.

Minds Matter

I met today with one of my Advisory Council members, Jamie Pruett. I learned that he was also serving as the President of Minds Matter. What a wonderful organization.

From their website:

Founded in 2004, Minds Matter of Denver connects underprivileged metro Denver students with adult mentors, who provide assistance with academic development, SAT preparation and the college application process; including school selection, essay writing, and interview skills. At present the Minds Matter of Denver Prep Program works with 10th and 11th grade students in selecting and applying to summer college programs, where they can bolster their academic record by taking college credit courses and experience campus life. In the fall of 2006 we began our first Senior Program to assist high school seniors with the entire college application process, including school selection, essay writing, and financial aid paperwork.

Each student is grouped with 2 adult mentors who typically have complimentary interests and personalities with each other as well as the student. Mentoring groups meet once a week during the school year, for 2-3 hours at a single location, where Minds Matter volunteers can supervise a structured session for all students and mentors.

Mentors not only guide students through the application process, but also provide a deep level of commitment and encouragement. Mentors work with students for at least one full academic year and typically through the student's high school graduation. In this time, the students often develop close bonds with their mentors and readily seek their guidance and friendship. Yet, students are not the only ones who benefit from the Minds Matter program. Our mentors also find relationship building with both the mentees and with other volunteers a satisfying and rewarding experience.

Jamie started as a Mentor in this program several years ago. What a wonderful way to make a difference.

Pondering Oprah

I've been thinking a lot about Oprah Winfrey over the last few weeks. I've never seen her TV show but know that it is popular. She  routinely makes the top 50 lists of the most powerful women in the world hosted by Forbes or Fortune. I am always interested in how people in such positions decide to use their power.

Oprah made headlines last month for some alleged abuses by a head mistress at the Oprah Winfrey Leadership Academy for Girls she opened in South Africa in January of 2007 (wikipedia link).

Back in July of 2006, I shared my dream of boarding schools, such as that built by Oprah, being safe havens for any who need them. This idea, for me, started back at least a year prior in an international entrepreneurship class where we were asked to come up with international franchise opportunities. I presented a scaled down version of a non-profit boarding school that grew during my visionary leadership class as described here.

My thought on hearing about the scandals at Oprah's school was not "oh the horror" but "oh my gosh she built my dream!" Oprah started this dream back in 2000 after a meeting with Nelson Mandela. She almost gave up when people could not see her vision for this school. She built a magnificent learning center for young women in South Africa. The mission of her school is simple.

The Oprah Winfrey Leadership Academy for Girls - South Africa supports the development of a new generation of women leaders who, by virtue of their education and leadership, will lead the charge to positively transform themselves, their communities and the larger world around them. To accomplish this goal, the Academy provides a rigorous and supportive educational environment for academically talented girls who come from economically disadvantaged backgrounds. The Academy strives to equip its learners with the intellectual and social skills necessary to assume positions of leadership in South African society and beyond.

I can already envision the impact these young women will have on the future of our world.

You can learn a lot about a person by observing how they react in a crisis. When Oprah learned of the alleged abuses at her school, she literally dropped everything and went to South Africa. The headmistress accused of the assaults was fired. Oprah apologized to the students and their families. Each student was provided a cell phone and Oprah's direct number. The girls were told to call her with any problems or concerns. It is so uncommon these days to see leaders taking responsibility. Oprah completely owned this problem, claimed it, and empowered all in her care, even if really they are only in her care in name only, to contact her directly.

I think that all of our educational leaders could learn from Oprah's response to this crisis. The next time you see a bomb threat or shooting on a college or high school campus, could you imagine the principal or president responding in this way? You might think that these people could not possibly have the time to answer so many phone calls, to personally talk to each person who is concerned or affected. I used to think so myself. But if Oprah has time to do this, how could they not? In the face of this extraordinary example, how can any of our educational leaders do less.

Colin Farrell

It's easy to find news of celebrities taking a moment at the holidays to work at a soup kitchen or helping the homeless. I'm not discounting those deeds as any service is  worthy. But there are certain celebrities who seem to treat their service to others as more than just an annual photo opportunity. Colin Farrell is one of these. 

Almost every month, I come across stories of Colin Farrell quietly (or not so quietly) doing for others. Back in September, Colin made news for taking a homeless man, Stress, a man he'd met several years ago, in Toronto on a grand shopping spree.

Colin apparently has a son with Angelman Syndrome, a rare genetic disorder. I teach my students about this disease but being able to point to someone whom it affects will certainly have more impact. While I may study such disorders from afar in the laboratory, Colin has been working with the Special Olympics since before his son's birth.

More recently Colin was in the news supporting an Irish child abuse prevention charity.

Thank you Colin, for all that you do.

Thought, Word or Deed?

Thought. Word. Deed. One of my long term goals in life is to have these three things in perfect harmony. I have a good handle on deeds. I can be careless with my words at times. My thoughts need a keeper. I figure with time that I can at least get my words and deeds in harmony. Every once in a while I feel somewhat guilty about the thoughts that flit through my brain, especially if they are petty or unkind. This is not the person I want to be and yet still these thoughts leap out from somewhere.

Last week I read an article that made me wonder whether the thoughts matter. David Van Biema wrote an article in Time Magazine on the life of Mother Teresa. I grew up hearing of her sacrifice and dedication to the poor. Her efforts won her the Nobel Peace Prize in 1979. Recently, letters that she had sent to colleagues expressing her doubts through the years have been compiled into a book: Mother Teresa: Come Be My Light edited by Rev. Brian Kolodiejchuk which will be released on September 4, 2007.

In these newly released letters it appears that Mother Teresa lost her faith or at least her certainty of her connection to God, soon after she started ministering to the poor. And yet, she continued, for years, decades. Her fears and doubts were shared with her mentors but her service and public persona were unwavering during these years. From the Time Magazine article it seems these letters will stir up some controversy on her life and acts. Excerpt below:

Although perpetually cheery in public, the Teresa of the letters lived in a state of deep and abiding spiritual pain. In more than 40 communications, many of which have never before been published, she bemoans the "dryness," "darkness," "loneliness" and "torture" she is undergoing. She compares the experience to hell and at one point says it has driven her to doubt the existence of heaven and even of God. She is acutely aware of the discrepancy between her inner state and her public demeanor. "The smile," she writes, is "a mask" or "a cloak that covers everything." Similarly, she wonders whether she is engaged in verbal deception. "I spoke as if my very heart was in love with God — tender, personal love," she remarks to an adviser. "If you were [there], you would have said, 'What hypocrisy.'"

As someone who generally considers myself atheist or at best agnostic (I lean Buddhist but practice nothing), I am left simply amazed. Here is a woman, who thought that God spoke to her, asked her to do this thing (i.e. leave her haven and minister to the poor and sick) and then abandoned her once she’d begun. In spite of this she kept at it year after year after year. Her public words and actions caused so much good, so much inspiration. She provided so much care to others. Do her thoughts matter? Do any of our thoughts matter or merely our actions? Or shall we simply judge her and be inspired by her actions?

I am inspired.

Anonymous Heroes

My local newspaper has a news story, by Katie Kerwin Mccrimmon,that police are seeking two men who came across a car accident. Normally, when the police are looking for someone, this is not good news for the people being sought. This time is different.

Aurora police are looking for two mystery men who pulled up to an accident scene on a cold, rainy night in mid-May just as eight other men were trying to lift a mangled car off the female driver, who was barely breathing. The good Samaritans happened to have a hydraulic lift on the back of their pickup. Within seconds, they pulled the car off the woman just as emergency workers arrived on the scene at East Iliff Avenue and South Sedalia Street. Minutes later, before anyone could get the heroes' names, they vanished into the dark night.

...

The Aurora Police Department wants to give the men an official commendation.

The woman who was under the car, Arleen Meyer, incredibly, is going to make it. She has numerous injuries but suffered no damage to her brain or internal organs.

The two unknown men are not the only heroes from that cold rainy night. Joe Rogers, a former Colorado Lieutenant Governor, also stopped at the crash. He and other good Samaritans flagged downed others - the  8 men who futilely tried to lift the car off of Arleen before the truck with the hydraulic lift arrived.

Heroes all.

Spreading Joy

I have come across a number of websites and blogs dedicated to increasing joy and happiness. If you know of others that I have missed, please let me know and I will add them. Some of these have a self-improvement or personal growth focus. It is my opinion that happiness follows from having the courage to follow your dreams, from being comfortable in your skin. These are ideas that most all of the personal growth and development websites promote.

The Happiness Blog - Secrets of a Happy Life

Feel Good - Dedicated to Helping you Find Happiness

The Happiness Project - daily tips for improving happiness

Live your Best Life - more of a self-improvement focus, but happiness follows

Christine Kane - Be Creative. Be Conscious. Be Courageous. Great ideas for living more thoughtfully.

Cultivate Greatness - again more personal development oriented.

Colm OReilly - true, lasting, inner confidence

Ririan Project - personal development for the purpose of a more joyous  life

Clayton Lowe - poet, inspiration, adventure coach

Goodness Graciousness - Sharing and spreading goodness and graciousness throughout the world

And finally, if humor is more your thing:

The creator of Dilbert, Scott Adams, maintains a terrific blog.

If picture humor is more your thing, perhaps this will bring a smile to your face.

Breakfast of Champions

Last week I attended the annual Breakfast of Champions event held by the Mile High Down Syndrome Association in conjunction with the Eleanor Roosevelt Institute. The goal of this event is to raise money and awareness for people with Down syndrome whether for research or family support services.

Often the keynote speaker is a person or family member of a person with Down syndrome such as Annie Forts who spoke last year.

This year was different. This year a professional motivational speaker, Sam Glenn, gave the keynote presentation. I have never seen anything like this. There was a large chalk board on the podium. After the introductory speeches, the lights went dark. Two spot lights were turned on and illuminated the large dark board. Inspirational music echoed through the room. Sam leapt onto stage and donned a glove and a mask. For the next ~15 minutes he drew in vibrant colors. At first it was difficult to make out what the image would be. My brain kept trying to make recognizable shapes from the swirls of color. At first I thought it would turn into some psychedelic stuffed animal but slowly the scene emerged, much like this image. You can view a video clip of his light house drawing process complete with inspirational music. But that was not all, when the drawing was complete the light show began, with the score from the first Star Wars movie playing in the back ground. A spotlight from the light house moved across the water. The birds flew out of the picture. Compelling words and ideas flashed across the image. The mood in the room, which had been somber after a mother shared her experience of learning that her newborn unexpectedly had Down Syndrome and the health problems she had faced, lifted.

After the drawing and light show were complete, Sam Glenn regaled us on attitude. To lighten up. His humor was somewhat crude and yet the tension flowed out of the room. He spent time telling us, and showing us, how a single person, through his or her words and actions can completely change the feeling of people all around. He mesmerized. One person, with his or her glum and unhappy attitude, can bring down all those around them. So too can one person with a bright smile and a kind word raise up the mood of everyone within the sphere of his or her influence.

Who would you rather be? Who would you rather spend time with? Be that person.

Tuskegee Airmen

I sat next to a hero on my flight to Washington DC on Wednesday but I did not know that at the time. I was assigned to an aisle seat in the economy class cabin. My great hope was that the person in the middle seat would be petite, quiet and recently showered. Instead there was a massive man in the seat next to mine. His breathtakingly beautiful wife was crammed against the window. I feared it would be a very long flight.

A flight attendant from the first class cabin took great interest in the couple sitting next to me. She checked on them regularly and ensured their every need was met. From their conversation, I learned that the man sitting next to me was one of the Tuskegee Airmen who had flown in World War II. He and his wife had moved to Colorado in the 1940s. He worked as a pilot for United Airlines for more than 20 years. Indeed, he had trained the captain of our flight that day. As we approached Washington DC, the flight attendant announced that we had a hero in our midst. She told his story to a round of thunderous applause.

My seatmate and his comrades were honored in Washington DC. President Bush and Congress awarded the Tuskegee Airmen with the Congressional Gold Medal.