An OCTA Experience

I. On September 22, 2006 I sent the following text to the OCTA (Orange County Transit Authority) via an email:

Sometimes it is better to just state the facts, so here we go!

I scheduled 5 trips on the Orange County Transit Authority (ACCESS) service this week.

Trip 1, Tuesday 9/19:
I requested they get me to the Tustin Senior Center before 12:30 pm. I was scheduled to be picked up between 11:43am and 12:13pm. The bus arrived at 1158 picked me up and arrived at my destination at 12:12pm. Just as advertised!!

Trip 2, Tuesday 9/19:
I requested that ACCESS pick me up at the Senior Center after 4:00pm. I was scheduled to be picked up between 4:15 and 4:45pm. Then at 4:40 I called to check on the status of the ride. After spending 27 minutes on hold, Regina asked me to call back in 20 minutes if they still hadn’t shown up. Let’s see, if I just spent 27 minutes on hold, sit around another 20 minutes then call back for another 27 minute hold. We just stalled another hour! So I called my wife and she graciously changed her plans and came to my aid. As she was pulling into the Center my bus showed up. The time was 5:15pm. Oh, they’ve got a new automated service, you can check the status of your ride without speaking to an operator! I tried it and got nowhere! YOU HAVE TO HAVE A PIN before it is useable. So how do you get this PIN? I’ve found no direction or instructions to get one!!

Trip 3, Wednesday 9/20:
I requested an arrival at the destination before 9:30am. I was scheduled to be picked up between 8:36 and 9:06am. At 8:57am two ACCESS busses showed up for the trip (I guess they were trying to make up for the previous day)! I arrived at my destination at 9:10am. So I guess this was a satisfactory trip, of course someone could have used the services of the second bus.

Trip 4 Thursday 9/21:
I requested arrival at the destination before 9:30am (I had a 10:30 appointment), The pickup was scheduled to occur between 9:09am and 9:39am. At 9:30 I called ride check and got Regina again. She advised me that the driver had an ETA of 9:59am. At 10:00 (the bus had not arrived) my wife left her office to come deliver me to my doctor’s appointment. I arrived there at 10:25.

Trip 5 Thursday 9/21:
I requested to depart the doctors office after 12:00pm. The trip was scheduled for 12:15 to 12:45. I was picked up at 12:38 and arrived at my destination at 12:58. Another successful trip!

All in all, OCTA ACCESS failed to meet its Service Level Commitments 40% of the time! Ok, I’m being too negative. My years of service management taught me to always make a positive statement so… OCTA met its Service Level Commitments 60% of the time.

So how do you get a PIN for the automated ride check?
Several months ago the system seemed to be fullfilling its stated Service Level Commitments, what happened?

If a customer makes a driver wait 5-minutes they are marked as a no-show. How long must the customer wait? What are the consequences?

Why did I not receive a call advising me of the delay?
Frank Austin

II. The response to this email was:

“Mr. Austin,

Thank you for your email regarding your recent experience with the OCTA ACCESS service. We apologize for the inconvenience these service failures have caused you and your wife. As I am sure you are aware, ACCESS operations transitioned to a new service provider, Veolia Transportation, in July. OCTA and Veolia are working diligently to improve service and minimize the occurrence of service failures.

Please review the following information, which address the questions included in your email:

1 . PIN for automated ride check: OCTA recently implemented and has been testing the Interactive Voice Response (IVR) system. You may use your ACCESS ID number as your password the first time you use the IVR system. After entering the system, you may continue to use your password, or change the number, if you so desire. You may also contact OCTA Eligibility, Customer Relations, or an ACCESS reservation operator for assistance with using the IVR system.

2. Service level commitments: Veolia Transportation has not consistently met OCTA's services standards. Veolia has been required to submit a thirty and sixty day plan to remedy these issues.

3. On-time performance and consequences: Vehicles must arrive within the designated 30-minute pick-up window or it is considered a missed trip. If a vehicle does not arrive within 60 minutes after the end of the pick-up window, it is considered a service delivery failure. The contract with Veolia Transportation includes penalties for service delivery failures.

4. Calls for late trips: It is OCTA's expectation that customers be notified if a vehicle is delayed. You should have received a telephone call advising of the delays for trips to and from, as outlined in your email.

Again, I apoloize for your incoveniences these past weeks. I hope this information answers your questions and we invite you to continue to share your comments with us.

Thank You,”

Housing and Emergency Shelter Trust Fund Act

Proposition 1C is the Housing and Emergency Shelter Trust Fund Act of 2006
Proposition 46 was the Housing and Emergency Shelter Trust Fund Act of 2002

Proposition 1C is a $2.85 Billion Bond Measure.
Proposition 46 was a $2.1 Billion Bond Measure.

Proposition 1C includes a $345 Million Multifamily Housing Program.
Proposition 46 included a $1037.8 Million Multifamily Housing Program.

Proposition 1C includes a $195 Million Supportive Housing Program.
Poroposition 46 included a $190 Million Supportive Housing Program.

Proposition 1C includes a $135 Million Farmworker Housing Grant Program.
Proposition 46 included a $135 Million Farmworker Housing Grant Program.

Proposition 1C includes $300 Million for the Calhome Program.
Proposition 46 included $108 Million for the Calhome Program.

Proposition 1C includes $200 Million for the Downpayment Assistance Program.
Proposition 46 included $112 Million for the Downpayment Assistance Program.

Proposition 1C includes $100 Million for the Affordable Housing Innovation Fund.

Proposition 1C includes $50 Million for the Emergency Housing Assistance Program.
Proposition 46 included $186 Million for the Emergency Housing Assistance Program.

Proposition 1C includes 1350 Million for infrastructure grants.

Proposition 1C is on the November ballot. Proposition 46 was approved by California voters in 2002.

RUSSIAN ROULETTE ANYONE??

Where oh where has my ACCESS bus gone!


Sometimes it is better to just state the facts, so here we go!

I scheduled 5 trips on the Orange County Transit Authority (ACCESS) service this week.

Trip 1

I requested they get me to the Tustin Senior Center before 12:30 pm. I was scheduled to be picked up between 11:43am and 12:13pm. The bus arrived at 1158 picked me up and arrived at my destination at 12:12pm. Just as advertised!!

Trip 2

I requested that ACCESS pick me up at the Senior Center after 4:00pm. I was scheduled to be picked up between 4:15 and 4:45pm. Then at 4:40 I called to check on the status of the ride. After spending 27 minutes on hold, Ragina asked me to call back in 20 minutes if they still hadn’t shown up. Let’s see, if I just spent 27 minutes on hold, sit around another 20 minutes then call back for another 27 minute hold. We just stalled another hour! So I called my wife and she graciously changed her plans and came to my aid. As she was pulling into the Center my bus showed up. The time was 5:15pm. Oh, they’ve got a new automated service, you can check the status of your ride without speaking to an operator! I tried it and got nowhere! YOU HAVE TO HAVE A PIN before it is useable. So how do you get this PIN? I’ve found no direction or instructions to get one!!

Trip 3

I requested an arrival at the destination before 9:30am. I was scheduled to be picked up between 8:36 and 9:06am. At 8:57am two ACCESS busses showed up for the trip (I guess they were trying to make up for the previous day)! I arrived at my destination at 9:10am. So I guess this was a satisfactory trip, of course someone could have used the services of the second bus.

Trip 4

I requested arrival at the destination before 9:30am (I had a 10:30 appointment), The pickup was scheduled to occur between 9:09am and 9:39am. At 9:30 I called ride check and got Ragina again. She advised me that the driver had an ETA of 9:59am. At 10:00 my wife left her office to come deliver me to my doctor’s appointment. I arrived there at 10:25.

Trip 5

I requested to depart the doctors office after 12:00pm. The trip was scheduled for 12:15 to 12:45. I was picked up at 12:38 and arrived at my destination at 12:58. Another successful trip!

All in all, OCTA ACCESS failed to meet its Service Level Commitments 40% of the time! Ok, I’m being too negative. My years of service management taught me to always make a positive statement so… OCTA met its Service Level Commitments 60% of the time. FYI I recall being hauled on the carpet if my department’s success at fulfilling service level commitments fell below 90%! Private Sector vs Public Sector productivity standards!!

Free Lunch?

As I was setting in the lobby of the Saint Joseph’s Pavilion, I couldn’t help but notice the parade of caterers coming into the facility just in time for the lunch hour! I also became aware of the fact that these caterers were arranged by drug companies and were serving lunch to the doctors and their staffs. Now why would they do that?

THE RENEWED MEASURE M

The Renewed Measure M is a 30-year $11.8 billion dollar TAX! IT PROMISES….

Project A: Improvements to I-5, the Santa Ana Freeway, between SR-55 and the ”Orange Crush’
$470 Million

Project B:Improvements to I-5, the Santa Ana Freeway, between SR-55 and SR-133 $300.2 Million

Project C: Improvements to I-5, the San Diego Freeway, between the El Toro interchange and SR-73
$627 Million

Project D: Update and improve key I-5, San Diego Freeway interchanges
$258 Million

Project E: SR-22, Garden Grove Freeway interchange improvements
$122 Million

Project F: Add new lanes to SR-55, the Costa Mesa freeway, between SR-22 and the San Diego freeway I-405
$366 Million

Project G: Add north bound lane on SR-57, Orange freeway between SR-22 and Lambert Road in Brea
$258.7 Million

Project H: SR-91 improvements between I-5, the Santa Ana freeway and SR-57, Orange freeway
$140 Million

Project I: SR-91 improvements between SR-57, Orange freeway, and SR-55, the Costa Mesa freeway
$416 Million

Project J: SR-91 Improvements between SR-55 and the Orange/Riverside county line
$925 Million

Project K: Improvements to I-405, the San Diego freeway, between Los Alamitos and SR-55
$500 Million

Project L: I-405 improvements between SR-55 and I-5
$319.7 Million

Project M: I-605 access improvements
$20 Million

Project N: Freeway service patrol
$150 Million

Project O:Regional capacity plan, unmapped improvements
$1132.8 Million

Project P: Regional Traffic Signal Syncronization
$453.1 Million

Project Q: Local fair share program, revenue to cities for local improvements
$2039.1 Million

Project R: High frequency Metrolink service
$1014.1 Million

Project S: Transit extensions to Metrolink
$1000 Million

Project T: Convert Metrolink stations to Regional Gateways that connect Orange County with High-speed Rail Systems
$226 Million

Project U: Expand mobility choices for Seniors and persons with disabilities
$339.8 Million

Project V: Community based transit/circulators
$226.5 Million

Project W: Safe transit stops
$25 Million

Project X: Environmental clean-up
$237.2 Million

I'M TRYING, AT LEAST I KNOW I WAS HEARD

IN AN EMAIL SENT TO THE PRESIDENT ON MONDAY, AUGUST 28 2006 I WROTE:

MR PRESIDENT, YOUR ADMINISTRATION IS SENDING MIXED MESSAGES; IT'S BEING HYPOCRITICAL AND IT'S MAKING PURELY POLITICAL (REGARDLESS OF THE ETHICS) DECISIONS! And I'm a conservative Republican, imagine my disdane if I were a liberal Democrat.A short time ago you (George Walker Bush) vetoed the Stem Cell Initiative! Ok, I disagree with your decision but your concern for the dignity of life does merit consideration.Now you have voiced your support for your nominee to head the Food and Drug Administration and his decision to approve over-the-counter sales of the morning after, Plan B, birth control pill.Excuse the hell out of me, but didn't you just validate an embryo that has never graced a woman's reproductive system and then supported termination of an embryo that is present in a woman's reproductive system seeking to implant itself in the womb? What's wrong with this logic? MR PRESIDENT, you say you are a compassionate conservative, I don't think so! You're just another politician.Oh yeah, I've got a dog in this hunt! You vetoed hope for millions (myself included)!

Frank Austin


ON FRIDAY, SEPTEMBER 1, 2006 I RECIEVED THE FOLLOWING LETTER:

THE WHITE HOUSE

WASHINGTON

August 25, 2006

Mr. Frank Austin
!123^ Lane
!!!!!, 12345-6941

Dear Mr. Austin:

Thank you for writing to President Bush about the complex issue of human embryonic stem cell research. We appreciate hearing your views.

In making a decision on the use of Federal funds for human embryonic stem cell research, the President consulted with scientists, scholars, bioethicists, religious leaders, doctors, researchers, members of the Congress and the Cabinet, and the American people. He spent a great deal of time studying and reflecting on this issue. The result is a balanced policy shaped by deeply held beliefs regarding both the sanctity of human life and the potential of science and medicine to help humanity.

The President's policy has allowed important research to go forward without using taxpayer funds to encourage the further deliberate destruction of human embryos. There is no ban on human embryonic stem cell research, and the policy places no limits on the research itself. In fact, this Administration became the first to make Federal funds available for this research -- yet only on stem cell lines derived from embryos that had already been destroyed. The-Administration has also expanded funding for research of human non-embryonic stem cells, which can be drawn with no harm to the donor. This research has already led to treatments for thousands of patients and continues to show great promise. As the President has said, our challenge is to harness the power of science to ease human suffering without sanctioning the practices that violate the dignity of human life. President Bush believes that America's scientists have the ingenuity and skill to meet this challenge.

Enclosed is a fact sheet concerning stem cell research and the President's position. Thank you again for writing. President Bush sends his best wishes.
Sincerely,

Darren K. Hipp
Special Assistant to the President and Director of Presidential Correspondence

Enclosure

FACT SHEET: STEM CELL RESEARCH

"Like all Americans, I believe our Nation must vigorously pursue the tremendous possibility that science offers to cure disease and improve the lives of millions .... Yet we must also remember that embryonic stem cells come from human embryos that are destroyed for their cells. Each of these human embryos is a unique human life with inherent dignity and matchless value. "
-- President George W. Bush, July 19, 2006

The President's Policy

"In 2001, I spoke to the American people and set forth a new policy on stem cell research that struck a balance between the needs of science and the demands of conscience. "

President Bush's policy aims to support stem cell research without creating an incentive for further destruction of human embryos.

• When President Bush took office, there was no Federal funding for human embryonic stem cell research. Under the policy announced by the President 5 years ago, this Administration has become the first to make Federal funds available for this type of research. The funding provided is for research on human embryonic stem cell lines that were created before the policy was enacted, where the life-and-death decision had already been made.
  
• The policy places no limits on the research itself, and there is no ban on human embryonic stem cell research. The only limits in the policy are restrictions on using taxpayer funds to encourage the further deliberate destruction of human embryos. Only research that uses Federal taxpayer dollars is affected by this policy.
  
• On July 19,2006, President Bush signed the Fetus Farming Prohibition Act of2006 to prohibit the trafficking of human fetuses that are created with the sole intent of aborting them to harvest their parts.
  
• Additionally, the President vetoed the Stem Cell Research Enhancement Act of2005. This bill attempted to overturn the President's balanced policy by compelling American taxpayers to support the deliberate destruction of human embryos in the hope of finding medical benefits for others.
  

Ethical Principle
"As science brings us ever closer to unlocking the secrets of human biology, it also offers temptations to manipulate human life and violate human dignity. Our conscience and history as a Nation demand that we resist this temptation. "

The President remains committed to exploring fully the promise and potential of biomedical research while respecting the moral boundaries that must guide such research.

• The balance the President struck is a sound one: the Federal Government will provide funding for stem cell research as long as Federal funds do not encourage the further destruction ofliving human embryos.
  
• This policy lets the government go as far as is ethically permissible in advancing research without crossing a crucial moral line. As the President has said, crossing the line would needlessly encourage a conflict between science and ethics that can only do damage to both, and to our Nation as a whole.
  

Exploring the Promise of Stem Cell Research
"America pursues medical advances in the name of life, and we will achieve the great breakthroughs we all seek with reverence for the gift of life. "

The Bush Administration was the first to provide Federal funding for human embryonic stem cell research and has strongly supported research using stem cells that can be drawn from children, adults, and the blood in umbilical cords with no harm to the donor. These stem cells have shown therapeutic promise and are already being used in medical treatments.

• The Bush Administration has provided more than $90 million since 2001 for human embryonic stem cell research pursued within clear moral bounds. As of July 2006, more than 700 shipments of eligible stem cell lines have been sent to researchers who requested the lines for use in scientific research, and thousands more are available upon request.
• An estimated $200 million in fiscal year 2006 will be provided for the following types of human non-embryonic stem cell research: adult, umbilical cord blood, placental, and bone marrow. This research has led to treatment for thousands of patients and continues to show great promise.
• The President has established new National Institutes of Health (NIH) stem cell centers of excellence to promote research on stem cells, as well as a National Stem Cell Bank that will reduce costs for researchers using approved lines. The Federal Government is also developing a network of cord blood stem cell banks to help physicians find matches for their patients and to help researchers explore the uses of cord blood stem cells in regenerative medicine .
• The President has directed the Secretary of Health and Human Services and the Director ofthe NIH to use all the tools at their disposal to aid the search for stem cell techniques that advance promising medical science in an ethical and morally responsible way.
  

Unprecedented Support for Medical Research
"In this new era, our challenge is to harness the power of science to ease human suffering without sanctioning the practices that violate the dignity of human life ... .I believe America's scientists have the ingenuity and skill to meet this challenge."

The NIH is giving unprecedented support to the effort to find cures and treatments for disease by supporting the full range of scientific opportunities. For example, funding for research into the following diseases has been dramatically increased:

• Alzheimer's Disease -- $525 million in fiscal year 2001 to $652 million estimated for
  fiscal year 2006
• Cancer -- $4.38 billion in fiscal year 2001 to $5.6 billion estimated for fiscal year 2006
• Diabetes -- $688 million in fiscal year 2001 to more than $1 billion estimated for fiscal year 2006.
• Parkinson's Disease -- $175 million in fiscal year 2001 to $223 million estimated for fiscal year 2006
• Spinal cord injury -- $71 million in fiscal year 2001 to $88 million estimated for fiscal year 2006

LIFE vs DEATH or STEM CELLS vs HEART TRANSPLANTS

So that small cluster of cells that have no defined form are human life. OK, if life begins at conception is it safe to say that life ends when all cell activity ceases? When the cells stop reproducing! Its the same standard isn't it?

Does life end when the heart stops beating? Does it begin when the heart starts beating? Does it begin and end when a person starts and stops breathing? Does it begin and end when the cells stop reproducing? If life starts at conception isn't it safe to say that it doesn't end until all the cells die!

What about a transplanted heart, who's heart is it? Twenty years after the transplant is the DNA in the cells of that heart the donor's or the recipient's?

Just wondering!

OPPOSE The Renewed Measure M

Fom the OCTA's growth management plan!

"ACCESS ridership has grown steadily over the past few years at a rate of more than 10 percent. Ridership in 2002 was 690,000, growing to 840,000 in 2003, and exceeding 1 million in 2004. In the upcoming year, we expect ridership to double what is was in 2002. By law, ACCESS must be provided wherever and whenever fixed route bus service is operated within a ¾ mile corridor of the fixed route network. Because the service is required by the Americans with Disabilities Act (ADA), a civil right's law, OCTA cannot restrict the growth by placing a cap on the money spent on the program. This has some other transit properties in the position of meeting paratransit program growth by cutting back on their fixed route service. At OCTA, we are fortunate not to be in that position today, but left unchecked, this growth could begin to affect our ability to grow the fixed route program or even maintain the level of service provided today. Funds used to provide ACCESS are the same funds used to provide fixed route service. With only one pot of money, it is imperative that we look at the proper balance between fixed route and ACCESS service to meet the transportation needs for all residents throughout the county."

What about the Measure M funds?

From the Measure M assesment, http://www.octa.net/pdf/mm_assesment.pdf: Sec2:22 (page 27 of 53)

"Of all Measure M program and project line items, only the discount fare for senior citizens and the disabled and GMA's are capped at a set dollar amount and do not grow with sales tax revenue growth."

So.. even though the Measure M sales tax revenue has grown by approximately 33%. Not an additional dime has been directed to senior and disabled transit AND the Renewed Measure M offers the same prospects even with a projected 95% growth in senior citizen population and a 30 year extension of the tax.

The cap is in place and the OCTA intends to maintain it! Just read the assessment of ACCESS above and remember, the citizens of Orange County invested an additional 3+ billion dollars in our transportation system to date, and as we age the system will be seeking a balance between our needs and all other residents throughout the county.

Seems rather reminisant of the Social Security debacle doesn't it. Then it was a social need. Now it is an entitlement program!

JUST VENTING

Ok, I've got a burr under my saddle and I just feel like bucking off the issues riding my back.

First is the Orange County Transportation Authority, aka the OCTA. It is now proposing an extension of the 1/2% sales tax for 30 years.

One of the accomplishments the OCTA touts is stabilizing senior and disabled citizen bus fares. Want to guess which segment of the populace saw the highest percentage increase in bus fares during the 14 years the tax has been in collected?

Now the proposed extension will rake in about eleven billion dollars and OCTA is planning to use 1% of that to fund senior and disabled transit programs. Please notice how non-specific that is. It's LIP SERVICE!!! Hey OCTA BULLETIN, BULLETIN, BULLETIN. WE BABY BOOMERS WILL SOON BEGIN RETIRING! WE BABY BOOMERS WILL BE A FORCE TO BE RECKONED WITH THROUGHOUT THE MAJORITY OF THE NEXT 30 YEARS!!! YOU ARE NOT THROWING ENOUGH OF OUR MONEY AT THE AGING POPULATION'S NEEDS!

Lets see, you have built tollways we can use at additional cost. Car pool lanes most people can't use because they're not in a car pool. Built or refurbished bus stops, whoopee! Improved some freeway interchanges so that the bottlenecks are now someplace else. You've proposed a tunnel through the mountains; for which I'm sure you'll collect a toll. Now hybrid vehicles can use the car pool lanes so even the car poolers have cause to complain. And about that artwork on the walls lining the freeways... ENOUGH ALREADY!!! Hey OCTA, two words...MASS TRANSIT!

The way its going we won't be able to afford the gas to use OCTA's great feats of engineering and infrastructure! Maybe the traffic will diminish to the point that we'll have excess capacity on the highways and byways.

I am suggesting that everyone I know contact their city council and voice their opposition to the renewed Measure M. Before it can be presented to the voters via proposition, more than half the citys in the O.C. must to approve it.

That's enough for today, I'll continue tomorrow. I'll have the drug companys on my mind then!

2006 MS Walk; Irvine, CA

Well, I set a personal goal of $1000.00 for the walk. As of today I’ve got donations to my web page totaling $1710.00 and I’ve got at least $200.00 yet to turn in. I am very happy with the outcome of a fundraising event held at the Vineyard Terrace Trattoria. That event raised $200.00 for the cause and the turnout was far beyond my expectations. I recommend this restaurant to anyone looking for a friendly quality dining experience in the Tustin area. Oh, they also cater special events.

While I am pleased with my personal effort my attempt to form a team and raise $8000.00 failed miserably.

The manager in me motivates me to analyze this performance. So, here’s my story! My sphere of influence has declined to the point that my ability to move people to act is becoming very limited. I can still count on family and close friends but moving beyond that is very tough. I’m not inclined to use Multiple Sclerosis to garner sympathy. I find myself traveling in circles that include fellow MS patients that are more mature and generally retired. That doesn’t strike me as a philanthropic gold mine! I sent 545 email messages to the Tustin and Irvine, CA Chambers of Commerce member companies. The result was one donation and I have an ongoing relationship with them. So…

I am going to, “throw in the towel” on trying to go big and bold. I will recognize the limits of my influence and work within those boundaries. I think I can dedicate myself to my individual effort and forget the team effort. I may even be able to top this year’s total!

ODE TO MS

by Leslie B. Malmgren 3/4/06

You and me,
And me and you
Together, forever

Not all you,
But not all me
Together we grow

Like many we fight
I say yes
And you say no
Still we survive

I have become me
Due to you
And you live
Through me

Always questions
Never answers
Just tomorrow
Like today

But You Look So Good !

- Author unknown

When I woke up this morning Just like I always do,
I found that this was different
I was really feeling blue.
I know there's nothing I can do
To make myself feel fine.
I'll simply try the best I can
To work and not to whine.
My torment in my body
No one can understand.
They look at me, I'm looking good
I must be feeling grand.
To look so hale and hearty,
I must be feeling great.
The way my body treats me
They cannot estimate.
For one to look so healthy,
With good colour and a smile,
They think I'd like to have some fun
And maybe walk a mile.

They cannot know what's going on
Inside my body now.
I may look strong and healthy
And could even lift a cow.
But that's not how it is with me,
I struggle to get dressed
My buttons give me lots of time
To really get depressed.
I cannot do the simple things
An eight year old can do.
I can't do up my button
Or even tie my shoe.
Frustration is my daily pal
Stays with me all my life.
Especially when I try to eat
And cut things with my knife.
Sometimes this makes me cranky,
Cause all of this frustration
Is more than I can bear.
I do not want to be a crank
Or even a complainer.
What's going on,
You cannot know,
Even if you had a trainer.
Try getting dressed with mitts on.
It'll make you feel lots older;
Or walk a hundred yards or so,
Your leg tied to a boulder.
Try talking to your friends about
The things you do and see.
Especially when you can't speak right
As "fifty" comes out "free".
You know the things you want to say
They just don't seem to come.
Good thing it's only now and then
Or they'd all think you're dumb.
But that's not hard to live with,
As friends, they all know you.
And when the times get really tough,
They're there to see you through.

It's really not demeaning
On someone to depend,
For most of us can find someone
Who'll help us as a friend.
Some understand the turmoil
We go through day by day;
They help us when we need it
And get us on our way.
Those friends do understand MS
And what it does to us.
But some cannot understand
Why so often we do fuss.
About the feeling we'll explode
Or half your body's numb,
Or that your brain's not up to par
And you feel really dumb.
Who cares you ran the hundred
In seven seconds flat.
Your ball days too are over,
You can't even hold a bat.

So you lose your temper
Every now and then!
It really doesn't matter much
Cause you don't even know when.
That's what happens with MS.
You're full of ups and downs.
But people always notice that
You've got more smiles than frowns
You think you cannot handle it,
You're wrong, you're wrong my friend.
We, all of us, can handle it,
So let us not pretend.
Of course it's not a fun disease,
But name me one that is.
And I'm sure to give you full marks
For being such a whiz.
It's hard when on the inside
You feel less than you should.
But look upon the bright side,
Hey! You're really
looking good!

Who are the people with Multiple Sclerosis? - By Virginia Sanchez

We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little 'funny' at the grocery store. We are the people that you "tsk, tsk" over because we might look "too good" to use a handicapped parking space. We are the folks who may not be able to get out to the Church or Temple every weekend; we are your peers; we are human beings.

We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.

Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.

Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. "HOW ARE YOU D-O-I-N-G????" they'll scream, speaking to us as though we were either hearing or intellectually impaired. "YOU LOOK SO G-O-O-D!!!!"

Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; "..and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S..."

We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Everyperson. We are the People with Multiple Sclerosis. We are People, Just Like You....

CHRONICITY by IRA LIPSKY

Chronic means forever.
Chronic means no days off.
Chronic means you arise and drift off with it.
Chronic means all of your family, friends, co-workers, neighbors & acquaintances know you through it and it through you.
Chronic means you can't leave it, you can't escape it, you can't fool it, you can't remove it, you can't forget it, you can't buy or sell it, you can't give it away,
Chronic means it is a part of you.
You can hate it, despise it, revile it, ignore it, and it remains part you.
You can fight it, go to Germany for it, deamalgam it, sting, pharese, and oxygenate it, magnetize it, oil, low-fat and deglutinize it, consult stars and swallow algae for it, imprison your free radicals for it.
And the next day it remains.........
Chronic is forever.
© Ira Lipsky

MS and Fear-The Terrorist Within by Ira Lipsky

I see similarities between the fears of the victims of deliberate terrorism, and the fears I face everyday. Like them I am in the grasp of a terrorist. My terrorist is a disease not a person, yet they both act in similar ways. For example:

-I never know when an attack is going to occur.
-I never know what the extent of the damage will be, or how long captivity will last.
-There is no reason or logic I can appeal to, my captor doesn't care.
-People not in my situation can only offer support, they cannot identify with me.
-My family and friends are frightened, frustrated, and angry because they cannot rescue me.
-My fate is in the hands of bureaucrats and specialists, who while looking at the "big picture" tend to forget that I am an important part of my own small picture.
-My fear can make me act irrationally, and I will grasp at any straw to gain freedom.

However, people with MS differ in a life saving way from the victims of terrorism, because we KNOW that a terrorist is lurking within. That knowledge gives us a sense of power and potency which can be enlightening and protective. As much as we want to be like everyone else, and take good health for granted, we can't because our bodies are held hostage. But no chain ever made can bind the psyche, our minds and spirits are free. This is not a distinction to be taken lightly. Throughout history people have survived against seemingly overwhelming physical odds, because their minds and spirits were strong. A commitment to self-worth and survival can endure relentless bombardment.

We will not succumb to the terrorist within as long as we believe in ourselves and maintain our dignity. With a firm sense of self and the support of our families and friends, we may know fear, but don't have to be dominated by it. Living on the edge as every person with multiple sclerosis does, we must learn how to balance, when to move, and when to let life's winds blow on by.

© Ira Lipsky