From Where I Sit

Valued Program Endangered by Budget Cuts

2010-03-02T12:01:00.000-08:00

AHCCCS Freedom to Work (AZ’s Ticket to Work)

Health Care Program for Arizonans with Disabilities that Work

Let us be tax payers, instead of tax takers!

Give Arizonan’s with a disability a hand up, not a hand out - Retain the AHCCCS Freedom to Work (Ticket to Work) health plan. It allows Arizonans with disabilities to work their way out of poverty, maintain vital AHCCCS eligibility until they can get their own health insurance while paying a monthly premium and sharing their healthcare cost.

AHCCCS Freedom to Work can help people earn their way off public assistance rolls completely. Support self-sufficiency!

Why do we need AHCCCS Freedom to Work?

Arizonan’s with disabilities are the poorest of the poor.

§ SSI beneficiaries can only get up to $674/mo.(2009)

§ SSDI beneficiaries get an average monthly benefit of $1006) – 2006/07 Social Security Admin.

Many of the 192,429 working age Arizonans receiving either Supplemental Security Income (SSI) or Social Security Disability Insurance living in poverty, could work if provided necessary health care assistance.
Social Security rules offer new federal work incentives to work to help beneficiaries work their way to self-sufficiency.
Without this program, few people with severe disabilities on AHCCCS will be able to take the risk of losing necessary healthcare coverage to try working again.
Young people with disabilities will face a future of poverty and dependency because without necessary healthcare, they will never be able to take advantage of the other work incentives available.

This is a moment in history for individuals with disabilities who can and want to work.

Many people with disabilities, ages 18-64, and on SSA benefits want to work but fear losing necessary health care. AHCCCS Freedom to Work is key to removing healthcare as a barrier to employment. The Ticket to Work & Work Incentives Improvement Act of 1999 offered states options to create a “Medicaid Buy-in” program that matches state funds ($2 for $1) to provide expanded Medicaid (AHCCCS) eligibility for people with disabilities who work. Arizona implemented our “Buy-in” program in January 2003 (99 legislators voted “yes” in 2001.)

Who is using the AHCCCS Freedom to Work:

· 1,049 (10/09) working Arizonan’s with disabilities are able to work, maintain health care while paying in a share of the cost through monthly premiums. Enrollment has been stable for the last year.

· Most had already been on AHCCCS/ALTCS previously.

· Most of these individuals are willingly risking the loss of their Social Security cash benefits, because of the commitment Arizona made to them in 2001 that they could keep their AHCCCS health insurance if they are working.

Benefits to all Arizonans:

1,000 individuals work @ $20,000/year (single person income) = $20 million in wages spent directly in Arizona businesses.
1,000 individuals (taking a standard deduction) = $360,000 in Arizona state income tax.
Anyone can acquire a disability anytime!

For more information contact David at ABIL 602-443-0723 or davidc@abil.org

(11/9/09)

The AHCCCS Freedom to Work = Employment = Self-Sufficiency = Economic Stimulus!

Issue: The Legislature is meeting this week to close the budget deficits for 2010 (this current budget year) and 2011 (starts July 2010.)

One program they are talking about eliminating in 2011 is the AHCCCS Freedom to Work (FTW) health plan they call “Ticket to Work”. Attached is a fact sheet on the FTW program.

What you can do to protect this important program:

Contact your legislator at www.azleg.gov (you can find your legislators here too)

· If you email: Put your name and address at the top of your email. Use your subject line to say: Constituent – Protect Ticket to Work AHCCCS plan in 2011!

· Ask them to fight to protect funding for this program that helps people with disabilities work

· Suggest they eliminate some of the tax credits we can not longer afford, such as country club memberships

· Tell them your story if you are on the FTW program – briefly why it is so important for you

You can make a difference! Don’t let them make decisions without you! Nothing about us without us!

As If I Needed More Motivation

2009-01-04T08:09:00.000-08:00

I woke up this morning unsure that I can truly finish this race. My 50 pound wheelchair is feeling heavier and heavier each time I go out to push. My shoulders are aching and my blisters have blisters. I can barely do the things I need to day-to-day because my hands and shoulders hurt so bad. Not a good thing in a wheelchair user.

This "secret" was posted at PostSecret today. It felt like a sign, a reminder that this marathon is bigger than me. I am humbled and remotivated.

Researchers at the Reeve-Irvine Research Center are ready to begin Human clinical trials in a treatment for infants with SMA1. I have followed the progress of these trials for selfish reasons;. This treatment, once proven successful, will be used to return function to people with chronic spinal cord injuries. People like me and so many others.

If the people of RIRC are willing to dedicate their lives to figuring out how to help babies with SMA1 and how to restore function in people with chronic spinal cord injury, surely I can give a few weeks of pain, sweat and a little blood to support them.

If you're moved by this, I hope you'll participate in whatever manner you can. Of course a financial donation is great but there is so much more that can be done.

Please, sign the petition for SMA while you're at it, sign the petition for spinal cord injury research. Both will only take a second of your time.

And, if you're able, please consider a donation to my marathon effort. All funds go to the Reeve-Irvine Research Center where one day, scientists will announce treatments for both of these horrible conditions.

Area Martial Artist Sits Down For Those Who Cannot Stand Up.

2009-01-03T16:18:00.000-08:00

FOR IMMEDIATE RELEASE

Area Martial Artist Sits Down For Those Who Cannot Stand Up.

Accepting the challenge of a student, Sr. Master Mark Kaup-Lee will compete in the PF Chang Rock N Roll Half Marathon in a wheelchair. A 7th degree black belt and owner of 5 area martial arts academies, Kaup-Lee was challenged by his student, Jennifer Longdon; herself paralyzed, to complete the 13.1 mile race as she will; in a wheel chair.

The pair will raise money for spinal cord injury research. Longdon, an area martial artist and student of Kaup-Lee’s, sustained her spinal cord injury more than four years ago in a still-unsolved shooting. Longdon was riding in a vehicle driven by her fiancé, David Rueckert, when the pair was shot multiple times by an unknown assailant. Rueckert was shot in the head; Longdon was shot in the back.

Kaup-Lee was helping Longdon with her training when she groused “You think it’s so easy? You strap 50 pounds to your back and race 13 miles on your hands.” Kaup-Lee in that instant agreed. “It’s not the same for me.” Kaup-Lee explains “I have control of my balance and core muscles in a way that a paraplegic like Ms. Longdon does not. But it’s still pretty challenging.” Kaup-Lee’s first taste of the difficulty faced by those with spinal cord injuries came when he was training with Longdon one morning. “He flew up a hill while I chugged along behind. When he reached the top I told him to try it again without using his abs. It was a little more challenging the second time.” Longdon teased.

While wheel chair competitors are not, in themselves, new or noteworthy; Kaup-Lee and Longdon will not participate in the racing chair division but in the standard division. “We’ll be using regular wheelchairs weighing between 40 and 50 pounds instead of the lighter racing chairs.” Kaup-Lee explains. “Ms. Longdon cannot get in and out of the racing chair any more without assistance.” Kaup-Lee adds “Why do it if it’s easy?”

Of course, they are competing in their fundraising totals as well as the race. The pair will donate all proceeds to Research for Cure, a 501(c)3 Not-For-Profit organization that raises funds for the Reeve Irvine Research Center.

Donations can be made through http://masterlee.chipin.com/research-for-cure, or http://jenlongdon.chipin.com/research-for-cure or checks made payable to Research for Cure may be sent to Lee’s Black Belt Academy, 715 W Baseline Rd Tempe, AZ 85283. Note “Lee” or “Longdon” in the memo.

###

Racing for a Cure

2008-12-30T11:30:00.000-08:00

Dear Friends,

A year ago I began a fundraising effort to personally raise $1,000 for spinal cord injury research. I challenged 10 friends to do the same. We’ve had varying levels of success. First, thanks to those who elected to participate. Thank you to all who contributed and very special thanks to Susan & David, Kumar, Marty and Richard for reaching the goal with individual pledges. My own efforts have fallen short due in large part to a very serious illness this past spring that nearly took my life. I am fully recovered and back on track.

On January 18, 2009 I will push my first half-marathon (the PF Chang Rock and Roll Marathon), all 13.1 miles of it. It’s hard to believe that just 4 months ago, I could not push to the mail box and a trip around the block was impossible.

So I am begging for sponsors. Will you consider pledging? And, if you act now, I’ll give you the 1/10th of a mile gratis. :) $5 per mile is just $65. $10 a mile is fantastic! “Flat” pledges of any amount ($25, $50, $75 or MORE) are also welcome. I am grateful for whatever you can pledge.

This has been a year of great victories and deep loss. Just days ago, another friend died a death he would not have faced if not for his spinal cord injury. The shock and grief have been a mental setback. I’ll be racing for those like Patrick who have alternatively pushed me and held me up when I could not.

Every dollar raised will go directly to the researchers at the Reeve-Irvine Research Center who work to treat and cure a host of neuro-degenerative disorders. There have been great strides made since my visit to the lab almost a year ago. I am more confident than ever that we’re on the right track.

I’ll even be so bold to say that I believe that the next 18 months will see the start of human clinical trials and breath-taking announcements as we move closer and closer to a treatment for neuro-degenerative disorders including spinal cord injury.

To contribute, either e-mail me with your pledge challenge or make a contribution here. http://jenlongdon.chipin.com/research-for-cure. I'll update you on my results ASAP following the race on January 18th.

Thank you for your continued support. I honestly would not make it without the help of my friends.

With love and gratitude,

Jen

Thoughts on Being "Disconnected" -- Amanda's Voice

2008-03-24T19:18:00.000-07:00

I've met some of the most incredible people since my injury, people I would never have met otherwise. My life is so much richer for knowing them. Amanda is one of those people.

I think I would have liked her no matter what. Amanda is an intrepid spirit. She's very smart, well-read and well-traveled. She's introduced me to Russian art and a new author. She teaches me so much and she's half my age!

Amanda was injured on Christmas day two years ago. She was snowboarding and struck a piece of grooming equipment that wasn't supposed to be there. I can only imagine what that day must have been like for her and her family.

Amanda sustained the most devastating spinal cord injury possible. She is now a C-2 quadriplegic. She requires a respirator to breathe. She depends on other adaptive technology to manage her life; voice activated software allows her to use her computer (she's diagnosed and fixed my computer during a chat session), maneuver her wheelchair and operate the lights and doors in her home. She's headed back to school to finish her post-grad program. She's one of the most grounded people I've ever met. I have no pity for Amanda; only profound admiration.

I am not the writer that Amanda is. I'm struggling to find the proper words to introduce her here just as I struggle to find words to describe this new life. I am, however, smart enough to know when I should get out of the way and let someone else talk. Following is a recent entry from Amanda's blog. It says everything. I begged her to allow me to share it. She was gracious enough to agree.

So, with permission, here's Amanda....

Thoughts on Being "Disconnected"

I had a conversation with somebody recently and they asked me what one word I would use to describe myself. It’s not very hard for me to think of an answer. That word is “disconnected.”There is the obvious physical disconnect. My day seems to be a never ending routine of somebody touching or otherwise manipulating my body for 100 different reasons. Feeding me, turning me, stretching me, bathing me, keeping my lungs clear and on and on. It never ends. Once one thing is done there is little reprieve until the next. Everything is scheduled and charted. Micromanaged. In reality my life has become a series of checklists and medication sign off sheets. Nothing can be forgotten. There is very little room for compromise or rescheduling.

Some of it happens when I am sleeping. For the most part though, I am awake. And when I am awake all this takes on a surreal feeling. I know this stuff is being done to my body because I lay there or sit there and watch it. But for the most part I feel very little of it. And for what I can feel, the sensation is either so impaired that unless I am watching myself being touched I can’t be sure what is going on. Or there is pain. Pain that doesn’t always make sense and can drive me to want to die on the spot. But that’s an entirely different topic.However, I am for the most part detached from it all. Disconnected. It might as well be somebody else lying on the bed and I am watching them having things that look both undignified and uncomfortable done to them. Dignity went out the door long ago. I don’t even know anymore what that word means when it pertains to me and my self-image.

This is a good day. On a bad day my body spasms like mad or otherwise seizes up. It shakes, thrashes, clenches, freezes. Again I watch it with detachment. It’s my body trashing around but it doesn’t feel like it. Mind and body are disconnected.

Then there is the emotional disconnect, which is I believe harder to deal with. I try to make myself feel better by repeatedly reminding myself “things could be worse.” And it’s true, they could be much worse. Some people don’t get this when I tell them that. For them my life is about as terrible one as they can imagine. It sucks there is no doubt about that. But I have no pretense that my life is as bad as it gets. The truth is though, regardless of my understanding of this, it doesn’t really make things any easier to deal with. The reality is that having to depend on somebody else for essentially everything is humiliating, exhausting, and although this might make not make a lot of sense, isolating. I have people around me 24/7. If not right in the same room then within earshot. Which means no closed doors and somebody popping their head in the room every few minutes to make sure the ventilator circuit hasn't popped off and that I am still breathing. But even with that, I feel alone, cut off, and not part of everything else going on.

I can do things. More things that most people might imagine. But they all involve somebody else doing something to enable me to do whatever it is I can do. Setting up my laptop so I can use it, putting me in my wheelchair so I can move around, even something as apparently easy as using a voice activated system to turn on lights requires somebody attaching my speaking valve to my tracheostomy tube when I wake up in the morning so I actually have a voice. The effect of this is that while I cherish what little independence I can have, it is always bittersweet because that even that independence is dependent upon others. It wears me down to continually ask for things. Many of those who function in a caregiver role have become very good at anticipating my needs. This makes things somewhat easier. But often I just skip over doing something because I am too tired to ask. This makes me feel disconnected from myself and from life. That might not make sense but that is how it feels. It is an incredible mind fuck to see a glass of water on a table a few inches from you and not be able to do a damn thing to drink it unless you ask somebody to come and help. But that glass of water is pretty much a metaphor for a thousand other things. All around me, out of reach, disconnected.

More later.
__________________

Our Trip to RIRC - Correcting an Oversight.

2008-03-23T14:35:00.000-07:00

Someone pointed out that I shared the report from our trip to Dr. Hans Keirstead's lab at RIRC with everyone in the world; except this blog.

So, to correct this oversight, the report in all it's 13-page glory is attached below along with the introduction and summary. It was inspiring to visit with everyone at RIRC. They are certain and steadfast in their work. Quite a juxapostion between this post and my other recent post on suicide.

For many with severe disability the two ends of this spectrum are so much closer and entwined than others might think.

Remember, the report below was created for an audience of well-informed people with SCI. If you have any questions, if any acronyms are troublesome, let me know and I'll clarify. Happy reading.

__________________________

Attached is the report of our trip to the Reeve-Irvine Research Center and Dr. Keirstead’s lab. It is 13 pages long and quite detailed. I’ll give a bullet point summary at the end of this post.

This has been a labor of love. Brian needs total credit for the report. My original summary of the visit was a chatty narrative. Brian’s pre-med background made him perfect for reorganizing and more thoroughly reporting the science behind the discoveries. The final report is 90% Brian, 10% me. No wonder I keep scrambling the letters of his name and typing “Brain” LOL. As you read this 13-page missive, bear in mind that Brian is C-6/7, he typed the entire report one key at a time with a pencil tip. That’s how important this message is to him -- and to me.

I hope I speak for everyone on the lab trip when I say that we’ve been riding a high ever since we stepped into the RIRC. Once again, I found myself holding back tears of joy and excitement during our briefing. Sitting at a table with Maura Hofstadter and Hans Keirstead as he casually yet earnestly lays out his plan for “curing” people with SCI is electrifying.

RIRC hosts an annual meeting that is open to the public. This year’s dates are March 11 -13. For everyone west of the Mississippi that can’t afford a ticket to DC for W2W, try to make this event. It’s a fabulous opportunity to meet Hans, Maura and other scientists working on our behalf and hear first-hand about their work.

There’s a quote that I used to have pinned to my bulletin board before I was injured. It seems apropos now: "At first people refuse to believe that a strange new thing can be done, then they begin to hope it can be done, then they see it can be done, then it is done and all the world wonders why it was not done centuries ago." Frances Hodgson Burnett.

We’re just about there, to that place where everyone will wonder why it took so damned long to figure this thing out. In a very short time, the Kevin Everett’s of the world (people who regain complete function after a devastating SCI) won’t be news. It will be a wonderful day when there are fewer and fewer new members to CareCure.

I, like many others here have worried that us “chronics’” were going to be forgotten once “acutes” were treatable. I don’t worry about that any more. Twice I have sat with Hans Keirstead and looked into his eyes as he talks about treatments for chronics. It won’t matter how old the injury is, Hans is known to say. Even if our injuries are ten, twenty, forty+ years post, this treatment will return function.

I find myself daydreaming of hiking my favorite mountain again. I’ve been looking at cute shoes. I’ve been dreaming again; that’s something I shut off with my injury. I have HOPE. Another emotion I have not allowed post-injury.

Giddy, giggly HOPE -- backed by facts.

I will walk again. I will pee on my own again. I will feel the sand between my toes again. And, I will, as I have always dreamed, dance DANCE DANCE at my son’s wedding.

Here are those bullet points….

* The Reeve-Irvine Research Center (RIRC) has treatments in development that address all 3 phases of SCI; acute, sub-acute and chronic. Since SCI represents a population too small for drug companies to consider profitable, RIRC scientists, like Dr. Hans Keirstead, find characteristics that SCI has in common with other conditions. By grouping these conditions together, 2 important goals can be achieved for people with SCI:
o Create a large enough population to be profitable to big pharma;
o Shorten the trial length of each treatment. Instead of following a person with SCI for 10 – 20 years or more for data, they can use shorter trials in these other conditions.

* Safety studies with IP10 antibodies in ulcerative colitis should report soon. FDA approval for UC will allow this drug to be used off-label in Acute SCI. In animal models, as much as 70% return was noted when IP10 antibodies are given within 6 – 10 hours of SCI.

* In early 2008 Geron is planning to file an IND with the FDA and undertake safety studies using differentiated stem cells that form oligodendrocytes (these remylinate the spinal cord). The Phase I trial will be for people with new SCI, 1-2 weeks post injury.

Multiple studies addressing chronic SCI are underway at the RIRC:

* Animal testing with human embryonic stem cell derived motor neurons is underway. Human clinical trials await FDA approval – those discussions begin January, 2008. The first trials will likely be for infants with SMA-1, and then adults with end-stage ALS. This treatment is also for chronic SCI, without limit to the age of the injury. Decades-old SCIs may benefit from the treatment. The Geron experience taught Dr. Keirstead and team, which is moving the hESC motor neuron therapy forward, a great deal about the FDA approval process and they have been able to streamline their processes to move through the FDA system faster. This will be beneficial to the chronic trials.

* RIRC Director, Oswald Steward, is currently testing FDA approved drugs in chronic cervical SCI models. These drugs were developed for other applications, like heart disease and cancer, but have been found to be neuro-protective in fish models. Dr. Steward is testing 7 drugs now, but has many more ready to go. If any of these show efficacy in rat models, we can very quickly, in a matter of months, go to humans in a Phase II trial because the FDA has already determined them safe.

* Dr. Kim Anderson works with care issues such as sexual dysfunction and the metabolic effects of SCI that make us more prone to diabetes and other conditions. She discussed her current pilot study regarding diabetes in the SCI population.

* We have often talked about how funding is THE obstacle to curative therapies. Dr. Keirstead was careful to point out that funding is not the only issue. FDA approvals also play a pivotal role in how fast or slow a therapy will be tested.

* If FDA approvals go as planned, we can reasonably expect chronic SCI clinical trials in humans in 2-3 years with treatments potentially available in as few as 5 years. These predictions are dependant on several factors: funding; FDA approvals and efficacy in humans to follow previous animal models.

* www.researchforcure.org accepts donations for RIRC and Dr. Keirstead.

* Hopefully, everyone reading this will be inspired to raise funds and awareness for SCI research. Tania Cusack and Dr. Maura Hofstadter are the contacts at RIRC that can help with fundraising and research questions.

Voter in a Wheelchair

2008-03-23T14:24:00.000-07:00

For the past two years I have worked with the Maricopa County Elections Department to help train election workers how to best assist voters with disabilities. I have tried to make the point that for some getting out and voting is monumental.

Recently I saw this commercial that makes my point far better than my words ever will. I am so impressed that this company used an actress with a disability and created an honest, authentic portrayal of a slice of life in a wheelchair. Notice the everyday obstacles; weather, transportation, thoughtless barriers to be overcome just to participate in ordinary activities.

Kudos to Liberty Mutual for such a bold decision.

Kudos to Maricopa County Elections Department for their efforts to make voting possible for people with disabilities. I am so very proud of the work being done and for those within the Elections Department, especially Tonia and Tammy who have patiently, tirelessly championed this program.

The Great Fight

2008-03-22T17:57:00.000-07:00

con·tem·plate
Pronunciation: \ˈkän-təm-ˌplāt, -ˌtem-\
Function: verb
transitive verb 1 : to view or consider with continued attention : meditate on 2 : to view as contingent or probable or as an end or intention intransitive verb : ponder, meditate
synonyms see consider
Etymology: Latin contemplatus, past participle of contemplari, from com- + templum space marked out for observation of auguries
________________________________________________

I’ve contemplated suicide lately. Twice during this period I’ve come scary-close to surrendering to that siren call. Unrelenting pain accompanied by myriad life issues and social isolation all came together to make me wonder if there was any reason to go on. I don’t want to die. I just want the pain and sadness to stop.

It’s no wonder that suicide is the leading cause of death within the first three years of spinal cord injury. There is so much loss in the beginning. Loss of health. Loss of self. Loss of freedom and future. Loss of friends and for some, loss of family. All the health complications pale in comparison to the struggle to come to terms with sudden, unalterable disability lived within this alien new body.

Stigma exists in our society for those who commit suicide. People who do so are seen as weak or selfish. That’s easy to say. Try living this life before you judge. I am amazed by the number of people who tell me they don’t think they could live paralyzed. It’s ironic how many of these same people minimize my struggle with this decision.

I’ve been offered anti-depressants to get through. To blame my thoughts on depression is to trivialize the reality of my existence. Life with severe disability is hard. Sometimes quality of life trumps quantity of life.

I find near-total isolation of my SCI is the most daunting aspect. So many barriers exist that keep me from people. Getting inside other people’s homes is nearly impossible if the home has not been modified for a wheelchair. Bathrooms? Forget it. Same with meeting in public places; parking, accessible space and my unique bathroom needs make going out difficult.

A month ago, well after I started wonder if it still made sense to be alive, I was stunned to learn that another person within my spinal cord injury community chose to end his life. Ozy was a young man at the start of a big life when fate intervened. He was on a motorcycle trek through Mexico when a chance encounter with a wayward donkey caused a crash that left him a high-level paraplegic. Ozy went on to law school and started rebuilding but never found resolution. Ozy was a thinker, a doer and a writer. Among the last of his writings that I read is this…

"I expressed myself with my body! I showed joy with my body! I was a fighter and a wrestler, a streaker and skinny-dipper. I was a runner, a jumper, an expert weight-lifter, and yoga master! An adventurer! A thrower of axes and a hefter of logs. A fisherman who wrangled with sharks and octopi. A wearer of giant pumpkins! I was so much fun! A hearty embracer of friends. A climber of trees and of mountains. I loved to throw big rocks! To dig and build and move heavy things around. I was so strong! I loved to play with children! I would catch my cousins in my arms, all three at once, and run them in circles, or bear them proudly around on my shoulders."

Ozy and I shared an on-line community. We didn’t know each other beyond it. Upon learning of his death, our community pulled together and comforted each other. While many would not have made Ozy’s choice, almost everyone understood how he came to that decision. Since his death, there have been others who have come forward to say that they had either made an unsuccessful attempt or were also contemplating suicide.

From another friend (with permission)

Thanks for your post on suicide. I've been struggling lately and Ozy’s death has affected me. I didn't even know him beyond his posts. It's "the straw that broke the camel's back" On top of everything else, his choice sits in the back of my brain. I'm not always conscious of it but it's there and it colors all my thoughts. I hope it passes harmlessly. I was chatting with ***** and told her that it's not the SCI so much; I can live with that. It's the injury+ financial woes+ physical complications squared by estrangement +isolation + Ozy's choice = suicidal ideation. How does one talk about this outside of our community? I find that no one else gets it.

I acknowledge my injury. I understand its scope and (current) permanence. I REFUSE to accept it. I refuse to believe that I will live the next 20, 30, 40+ years in this chair.

The next time you’re tempted to tell me how “brave” I am or how admirable that I’ve gone on with my life, think twice. The struggle is great even if, from your perspective, it is invisible.

Those Damned Forwards

2008-02-19T13:15:00.000-08:00

Anyone who knows me well knows that I HATE HATE HATE those syrupy sweet forwards. I am not going to send anything to 10 friends to earn good luck or to wait breathlessly to see if you send it back to me so I know you care. I am a misanthropic curmudgeon for sure.

More often, if you send me one of those forwards, you’ll get this in return.

Today, however, I received one of those friendship poems that speaks to me in a visceral, honest way. I feel that I must share this one this time because it is the essence of me.

Are you tired of those sissy "friendship" poems that always sound good, but never actually come close to reality? Well, here is a series of promises that actually speak of true friendship.
You will see no cutesy little smiley faces on this card- Just the stone cold truth of our great friendship.

1. When you are sad -- I will help you get drunk and plot revenge against the sorry bastard who made you sad.

2. When you are blue -- I will try to dislodge whatever is choking you.

3. When you smile -- I will know you are plotting something that I must be involved in.

4. When you are scared -- I will rag on you about it every chance I get.

5. When you are worried -- I will tell you horrible stories about how much worse it could be until you quit whining.

6. When you are confused -- I will use little words.

7. When you are sick -- Stay the hell away from me until you are well again. I don't want whatever you have.

8. When you fall -- I will point and laugh at your clumsy ass.

9. This is my oath.... I pledge it to the end. "Why?" you may ask; "because you are my friend".

Friendship is like peeing your pants, everyone can see it, but only you can feel the true warmth.

Send this to 10 of your closest friends, then get depressed because you can only think of 4.

So there....

Valentine's Day gift funds SCI research

2008-01-10T07:53:00.000-08:00

Looking for a Valentine's gift? Please consider a visit to Whim. http://www.whimdesign.blogspot.com/

Not only is the Have a Heart bracelet pretty but 50% of the proceeds go to the Reeve-Irvine Research Center where scientists WILL cure paralysis.

Have a heart, buy a bracelet.

FDA Seeks Input Re: Human Clinical Testing

2008-01-09T17:54:00.000-08:00

The FDA is accepting electronic comments regarding human clinical testing of stem cell therapies. LINK
I beg you to ask the FDA to do everything within their power to expedite stem cell therapies for compassionate use. Your comments must be posted by close of business on March 26, 2008. Following is my submission and below that is more background on the FDA request for input.

I use some acronyms and abbreviations that are common in the SCI and research community. I put a key at the end of my submission for those of you that are unfamiliar with the terms.

I say this without hyperbole; I am dying. The complications of my spinal cord injury are killing me. I have defied my doctors’ predictions no less than 9 times in the past 3 years. There will be a time in the not so distant future that I do not recover. I have no hope that existing therapies will change this.

I have a child, a beautiful boy, who lost his childhood to my SCI. No child should have that experience. I want to see how his life unfolds. I want to meet the man that he will become. I want to meet my future grandchildren. I want to wring as much life out of this broken body as I can. I am not alone.

Hundreds of thousands of people face terminal hopelessness. Mothers watch their babies struggle in vain for air as SMA-1 steadily suffocates them. People with ALS face the same horrifying fate. Death and despair do not have to win. Stem cell treatments ready for clinical trials may effectively treat these conditions. Should we not have the opportunity to find out?

I acknowledge there are risks. All of life has risks. I have educated myself on the science of stem cells. I have met with key researchers. I believe they have reached a point where it is time to test these treatments in humans. We who know the future our afflictions hold for us are ready to face the risks posed by these treatments. Please give us a chance for life.

Approve clinical trials for hESC. Do not force us to leave our country in search of hope. In foreign clinics we risk fraud, dubious quality of care and worse. We trust in our government to see that, as US citizens, we receive the best possible treatments available in the world. That should include the potential cures made possible by hESC therapies.

Before another dies. Before another is forced to learn the rhythm of communicating while breathing on a respirator. Before another parent faces the despair of their child’s helplessness. Please approve clinical trials with hESC therapies. Thank you.

###

SCI = spinal cord injury

SMA-1 = Spinal Muscular Atrophy 1- a condition that manifests in infants around age 3 months and the mortality rate at 12 months of age is 100%.

ALS = Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease) a fatal, progressive muscle-wasting disease.

hESC = Human embryonic stem cells

---------------------------------------------------------------------------------------------

FDA Seeks Advice Re: Human Clinical Testing http://www.fda.gov/OHRMS/DOCKETS/98fr/07n-0471-nm00001.pdf

The FDA’s Cellular, Tissue and Gene Therapies Advisory Committee will meet April 10 in Gaithersburg, Md., to discuss “scientific considerations for safety testing” of such therapies, according to a notice on the FDA’s Web site yesterday.

"There’s a recognition at the FDA that stem cells are getting closer, and there needs to be some sort of guidelines on how to handle safety,”

Executives at Geron and Advanced Cell said they plan to appear at the meeting. Geron has communicated extensively with FDA reviewers over the design of the first human trial using embryonic stem cells, partly to convince the agency that putting the cells into people won’t result in the growth of abnormal cell clusters called teratomas, Thomas Okarma, Geron’s chief executive officer, said in interviews with Bloomberg.

http://www.telegram.com/article/20071219/NEWS/712190338/1002/BUSINESS

My Guilty Pleasures

2007-12-30T14:53:00.000-08:00

Every Sunday without fail, I log on and read PostSecret I love the range and the creativity of the secrets. They remind me that everyone is fighting a great battle, some less visible than others.

The Colbert Report will be back on the ert soon. I miss my daily dose of truthiness. The Daily Show and late-night tv will be back too.

Hope

2007-12-01T14:04:00.000-08:00

Hope. I haven’t allowed a lot of that lately. I find that spinal cord injury is best managed by keeping one’s thoughts firmly in check. Not a lot of reminiscing of life pre-injury, not a lot of wishing or dreaming about how different life would be if I were whole. At the same time, I do all I can to maintain my body so that if or when a cure comes, I’ll be eligible to participate. It’s this crazy balancing act of will, hope, acceptance and denial. I accept the dichotomy.

I expect something to come along that will result in functional gains in my lifetime. I just don’t pin a lot of hope on what that means. Will I be able to kick this chair to the curb? Will I be able to stand up and see what’s on the top shelf in the cupboard or at the grocery? Will I gain function that will improve my quality of life and perhaps even my longevity? I try to stay disciplined and not speculate too much.

When I slip, there is inevitably a price to be paid for allowing too much hope. Some experience will cruelly frame the limits of my current situation. An infection will fester and land me back in the hospital near-death. These episodes are followed by moments of deep despair and crushing depression. Better to stay rigidly neutral rather than ride this rollercoaster.

Then, Tucson happened and nothing will be the same.

Four days ago I crashed a private presentation by Hans Keirstead in Tucson. The hosts were very kind and welcoming. I was one of two people there in chairs and I had a chance prior to the presentation to talk to many of the members about what it meant to live with a spinal cord injury.

Meeting Hans Keirstead was the equivalent of meeting my favorite rock star. I was breathless. He is young, handsome and very charming. I saw no trace of the stereotypical stuffy academic in him. Before the presentation, he spotted me off in my little corner trying to be invisible; “Hi, I’m Hans” he smiled. I introduced myself and we chatted a bit. I told him the quick version of my attendance. The meeting was called to order and I found Hans sitting next to me as the hosts began their meeting and quickly attended to some other matters before the main presentation. The president of the organization invited every one to stand for the Pledge of Allegiance. Afterward, Hans leaned over and whispered conspiratorially, “I’m Canadian” I whispered back “that’s ok, I didn’t stand.” We shared a quiet laugh and then he was called to the stage.

In the dimmed auditorium I sat rapt as Hans lead us slide by slide through the complexities of his work. His ability to speak in every-day terms and retain the passion and scope of his work made his presentation all the more compelling. Time flew. Several times, I had to remind myself to breathe. Slide-by-slide, hope took root within me. It took all the discipline within me not to grill him on every slide for more details. I listened as he talked about how his work had progressed from acutes to chronics, how human clinical trials in a treatment for chronics were due to begin in months and how his lab was able to create the one thing my body cannot; motor neurons. I almost cried out when he showed an mpeg of muscle, grown from those laboratory motor neurons fire. Real, working muscle tissue! As if he could hear my mind screaming, he played the mpeg again. Hope fully germinated.

After the Q&A, I waited my turn to say my goodbyes. My host approached and bent down on one knee to speak to me eye-to-eye. “Would you like to join us for lunch?” My heart did the little dance of joy my paralyzed body could not. “Yes, please” I croaked. Thus, I found myself sitting next to Hans Keirstead as he talked about his work and his life. The more I learned about the man, the more confident I became that this was the researcher to back.

He talked a bit about his recent marriage, surfing, his love of flying helicopters and his time at Cambridge as the youngest person in his program in 200 years. He also talked about knowing at the age of 11 or 12 that he wanted to fix the brain and the spinal cord. Inside of Hans lives a desire to end the suffering of the many afflicted with neurological disorders. Conditions as diverse as SCI, ALS, MS, Parkinson’s and Alzheimer’s share commonalities that mean what works for one impacts other conditions as well. He runs an amazingly prolific lab. If he were not a stem cell researcher, I could easily see him as a billionaire internet entrepreneur.

I am not one prone to spiritual hyperbole. Yet, hearing Hans speak, looking into him, I feel that this man is destined to cure paralysis. Any chance that I can remain passive about the promise of stem cell research is gone. I’ve drank the Kool-aid and I am a believer; in the science and the scientist.

Lunch ended far too soon for me and it was time to part. I said my goodbyes to new friends with hugs and handshakes. Then I was in my van alone with my thoughts. The totality of the day’s events settled in and I began to sob from pure joy. On the drive home I allowed my mind to wander. Will I walk again? Maybe just stand eye-to-eye with another person? Would I hike Piestewa Peak again? Maybe one day I will feel sun and salt water on my legs and wiggle my toes in the sand. Maybe I’ll be able to physically express the joy my heart and spirit can barely contain. Maybe one day soon.

In less than 2 weeks I have the honor of visiting Hans’ lab and learning even more about his work, its progress and implications. I’ll share more then.

Just Pretend You're Dead

2007-11-26T10:36:00.000-08:00

This advice has been proffered for two vastly different circumstances.

First, the dreaded grizzly bear attack. I first heard this when I was 6 or 7 years old and preparing for my first camping trip. “Pretend you’re dead” an older cousin counseled sagely. I of course listened breathlessly to my cousin’s crisis cookbook on dealing with everything from the boogie man to that grizzly; wisdom meant to save my life in the wilds of central Ohio. At the time, this little Buckeye girl had no idea that the odds were better that I’d meet the boogie man in those Ohio fields.

I’ve moved west. Black bears are more common in my part of the country than grizzlies although their numbers are dwindling. Now, in the unlikely event that I ever do find myself facing an imminent bear attack, I have that childhood strategy to rely on; curl up on the ground in a tight little ball to protect my mushy parts and lay motionless. The thinking goes that the bear will believe you to be dead and bears are not interested in eating dead food. I don’t know if it’s true or not and I hope to never find out.

The second situation in which I was advised to consider this strategy is the dreaded public “invol.” This is one of those nasty little spinal cord injury secrets that we tend to share only with those that know the secret handshake and password to the club. “Invol” is short hand for involuntary bowel movement. I am a T-10 paraplegic. That means that from my mid-chest down I have no sensation or voluntary control. Code for I can’t tell when I have to ‘go.’

The general public believes that the worst part about having a SCI is that we can’t walk. On my list of all the individual attributes of my SCI that I would change if I could, walking barely makes the top 10. Spots one and two are owned by “one” and “two;” return of voluntary bladder and bowel function. I pee through a tube (a catheter) on a rigid schedule. Pooping is an ugly ritual that I leave to your imagination. However, as the saying goes, “shit happens.” Usually it happens at the most inopportune time. Fear of “going” in public keeps a number of people with neurological injuries locked safely away at home.

It was a frank discussion with another person with a spinal cord injury where the sage advice of my childhood was resurrected. We exchanged tips and stories of life in a chair when the subject turned to the dreaded invol. I shared my one and only story and he told me his. His was more public and contained a higher embarrassment factor than mine. Then, in that way that all the more poignant because it is such a casually spoken bald truth, he said to me “I’ve learned how to deal with it though.” He winked and smiled; “just pretend you’re dead.” We laughed but it stuck with me. This handsome young man, doctor-to-be struck by fate and now learning some of life’s more bitter lessons.

“Just pretend you’re dead.” Maybe spinal cord injury and grizzly bear attacks have more in common than I’d first realized. Both are sudden, unexpected and life altering. If survived, both leave a lot of room for second-guessing and “what if’s” Both tear through any illusion that life is fair, orderly and predictable. I suspect too that there may be some commonality in the area of public invol.

Coming out

2007-11-24T14:16:00.000-08:00

The day-to-day trials of spinal cord injury are infinate and embarrassing. Most people with SCI never speak about those details except among ourselves. I have been one of them. In an effort to maintain what little is left of my dignity, I do not speak of these things publicly. And therein lies the rub. If we don't voice these indignities then we remain the "brave little angels" in the wheelchairs.

I may regret this later but I have decided to share those details in the hopes that a greater understanding of what we go through will help move others to act politically and finanically to help end paralysis. To that end, I share the following post from my spinal cord injury group. The days following this post are the closest I've come to suicide post-injury.

I have had a commitment on my calendar for about a month to go and speak at a local high school. Even though I’m still sick, I figure I can pull it together long enough to give a rousing speech. I love doing these events and I think I’m pretty good at them too.

I get there, still feeling a little weak but I know that adrenaline will carry me through the speech. I went to transfer from the drivers seat to my wheelchair and boffed the transfer and go down. I’m all crumpled up and stuck in the back of my van so I dial 911.

It’s not a total disaster yet, I’m partially bearing my weight with my arms but when they give, I’ll fall the rest of the way in this very odd position and break more bones. I get the most annoying dispatcher in the universe. I try to explain everything to her. I asked her to please call inside the school and get someone to come out and help me stay up. This is a huge high school.

Pretty soon the campus cop shows up and the principal and vice principal in a golf cart. They all sit there and look at me. I yell at them to come help me please, I’m falling, I’m breaking my legs, please just lift me under my arms and keep me from falling. “We’re not allowed to touch you.” I’m crying, I scream in frustration, pain, fear and rage.

Finally, EMS appears. They lift me into my driver’s seat and inspect me. Not too deformed. Do I want to go to the hospital? One of the guys says, “At the very least, we should check your colostomy.” I don’t have a colostomy. But, I did have an invol all over the back the van.

Total humiliation in front of 7 men. I say the principal. “I’m supposed to be your speaker today, I’m sorry this will have to be rescheduled.” So much for a professional encounter…

The EMS guys don’t want to let me go off myself. So they followed me home, went in the house and got my shower chair and lifted me into that and helped me into the house. I also missed my interview. I thought I had a job. I was going to show up so confident and together, instead I can’t go because I pooped my pants. I called my PCA and begged her to come back and help me clean up the van and such.

Don’t know yet what’s broken but I've reached a point in my bone density that every fall results in a fracture of something, if only a toe. I’ll wait until there’s enough swelling and bruising to pinpoint it. Otherwise I get x-rays from T-10 to my toes. Three times in the last year is enough radation for one body thank you. I have huge abrasions on my back and butt and hip that I have to watch until they heal and it looks like I have an apple sized bruise on my hip.

Why is it that once you’re down, everything piles on? My son still hasn’t bothered to call to see if I’m still alive. Right now, I want to go to sleep and just peacefully pass on. I’m tired of fighting. I’m tired of the everyday humiliations and I’m tired of hurting and being sick. I hate being alone. Right now I never want to leave my bed again.

Wasted an up-do on this day damn it! I’m going to park myself in a safe place and drink!

My Anniversary

2007-11-15T07:36:00.000-08:00

Today is my anniversary. Four years ago today, my life completely changed. November 15, 2003, David and I moved in together and began our fairytale life. Oh sure, there was a handsome prince, beds of roses, moonlight dancing. There were dragons too, and evil trolls. We had financial struggles as David dealt with the fallout of an extremely acrimonious divorce. We had relationship struggles as our children dealt with the implications of our relationship. But, mostly it was good. No; great.

That magic year cumulated with a dream trip to Fiji. Away from the cacophony of the day-to-day we made commitments. First, to each other; I finally agreed to marry David. Next to our futures. We both decided to earn our doctorates; David’s in toxicology, mine in Oriental Medicine.

Three years ago today, my life completely changed yet again. November 15, 2004 started with the usual hike up Piestewa Peak to watch the sunrise. Then, our first day back to work following our Fiji trip. It was a whirlwind day of catching up and dreamy recollections of that idyll in Fiji. If coming down that mountain that morning I had known how much life would change just 12 hours later, I would have lingered.

9:20 PM November 15, 2004, we closed up shop and headed out for a quick dinner at our favorite little Mexican joint. We never made it home. At 9:46 PM, 5 bullets ripped through our lives and when the smoke cleared we learned those bullets had also ripped through David’s brain and my spinal cord. I guess you can also say that November 15th is our birthday since both of us “coded” that night.

The intervening three years from there to here have been insane. David has learned to function in a world of total darkness and he copes with incapacitating pain on a daily basis. My first big victory was learning to sit upright without assistance. Since then I’ve spent a lot of time learning how to cope with gravity in a new way. I struggle with life-threatening infections on a regular basis.

Since our injury, we have learned much about the character of people. There are those who cruelly took advantage of our tragedy and those who found our situation too sad or too challenging and chose to leave us behind. But mostly there have been angels who have given of themselves to comfort and support us. I am grateful to each and every one of you for all the large and small ways you have brought joy and comfort into our lives.

In the three years since our injuries, I have learned much about the science of neurological injuries. In these three years science has learned a lot about the science of neurological injuries too. What they’ve learned is that both the brain and the spinal cord are capable of regeneration under the right circumstances. This is huge, just like there was once a belief that the world was flat. Doctors now talk about when they will be able to heal our injuries instead of “if.”

The science exists. Clinical trials are beginning here in the US and throughout the world. Very soon, I will have the honor of meeting with one of the top researchers in the US to see first-hand how his work has progressed and learn more about these exciting advances. I’m eager to tell you all about after my trip.

Year-by-year, life goes on. November 15th will come again next year and the next… That magic day when scientists announce the “cure” for my spinal cord injury and David’s brain injury moves closer and closer. The biggest hurtle to this cure is money. The NIH budget has been decimated by war spending and other governmental priorities. Thus, those of us with chronic conditions from SCI to cancer to diabetes and MS find that we must fund our own cures.

So, on this November 15th, I would like to make lemonade from these lemons that have been handed to us. Once again, I need your help to do so. Will you help us fund these cures? Will you commit to raising one thousand dollars before the next anniversary of my injury? It’s less than $20 a week. Your thousand, along with mine and that person’s and all the others will give the researchers the boost they need.

I am asking you to have a car wash, a bake sale, a whatever-a-thon. Pass the hat at your Super Bowl party. Put a donation jar at your favorite hangout. Be creative and have fun with it.

Please.

The funds you collect will be donated electronically and will go directly to the researchers. No handling fees or administration costs.

I am also asking for your public commitment to raising these funds. Please respond here and let me know that you are willing to help. I know there are a ton a questions you’ll want answered. In the coming weeks, I will supply a link for your donations and some information about the research.

Thank you for your love and support.

Jen

The Power of a Single Finger

2007-09-28T09:53:00.000-07:00

One finger, a single click can change lives. I ask you to use yours to help me.

With a minimum of 500 clicks on this URL http://tinyurl.com/2776rg I will earn a chance to spend the day with presidential candidate Mike Huckabee. If I win that chance, I will spend my time with him lobbying for Spinal Cord Injury issues. By convincing one candidate to begin a public discussion on SCI issues, other candidates will follow suit.

This is a wonderful opportunity to bring SCI issues to the forefront on the national political stage. All you need to do is click. You don't need to register on the site, your email address is not collected (unless you actually enter it). No one will contact you. You are not endorsing this candidate or any other by clicking.

Quite frankly, I am not endorsing a candidate at this time. I am simply hoping to use this opportunity to communicate directly with a candidate and jump-start this conversation.

This is the simplest way possible to advocate for SCI issues without having to really do anything. Please, will you click? Click from every computer you can access, please.

Bonus points if you'll forward/post this URL for others to click as well. I assure you, simply clicking will not add you to any mailing list or commit you in any way to a candidate or political issue.

My friend and fellow advocate, Steven Edwards is also collecting clicks http://tinyurl.com/2686y7 but he has 500 and he's working toward earning more powerful rewards.

WE ARE NOT COMPETING. This is a cooperative effort.

Thanks!

Jen

Help Please

2007-07-04T15:03:00.000-07:00

I write this from bed as I am rather ill right now; part of why I haven't posted in a long, long time.

But I am writing to beg you to pray in whatever manner that you do that for a dear, dear friend. Another friend with an SCI is gravely ill.

Amanda is wise beyond her years, funny and adventuresome. She and I have shared laughs and tears and all our secret quirks yet we've never met. Anyone blessed to have a relationship with Amanda is richer for it.

Please send you thoughts, prayers, positive energy her way. Thank you.

Good News/Bad News

2007-05-24T17:51:00.000-07:00

I have severe osteoporosis and I've fractured both femurs since my spinal cord injury. The good news is that I have matching X-rays. The bad news is that I've learned that I am incredibly fragile.

Osteoporosis is a problem for people who don't bear weight on their bones and I understand that most people with SCI have some degree of osteo. After my first fracture, I learned a lot about osteo, and I've been actively working to reverse my bone loss. I take Actonel regularly. I eat a high calcium diet and take supplements. I stand for 2 - 3 hours each day in my standing frame. I participated in a FES study that created weight bearing exercise.

I went for a DEXA scan today. DEXA scans measure bone density. Often, the practitioner can give you an idea of how "old" your bones are based on their density. Last year I learned that the long bones in my arms were 36 y.o. my right hip was 75 y.o. and my left hip was 85 y.o. YIKES! I'm in my mid-forties.

The good news from today's DEXA, the very, very, very good news is that my spine and right hip have shown improvements. The spine more than the hip but improvement is improvement. The bad news, the very, very bad news is that my left hip has lost about 35% more bone density.

After consultation with the doctor, it appears that may be because of two factors, my most recent fracture was to my left leg. The splint and the support that kept the leg elevated seems to have been a factor in my bone loss. The other reason is that my left hip has twisted from the imbalance of my muscles that should hold it stable. The condition is called a pelvic obliquity and it's caused a severe "swoop" in my spine. It's hard to breathe sometimes because if it. Since I no longer bear my weight evenly on my hips, this seems to be a major factor.

The good news is that we'll get more aggressive on fixing my hip which has caused numerous problems. The bad news is that we'll get more aggressive on fixing my hip.

As far as osteoporosis treatment and prevention; the good news is there are options. I will take a new drug, Forteo and continue to stand in my frame and maintain a calcium-rich diet. The bad news, Forteo is a relatively new drug and there are some concerns about its safety. I think about the drugs that have created safety concerns lately; Vioxx, Avandia... others. I'll be taking this drug that may or may not pose risks by daily injections for two years. The other bad news, I'm no longer eligible for the FES study so I'll be unable to use FES and weight lifting to preserve my bones.

During my rehab I was taught that all of my choices from here on are going to be about weighing risks and benefits in making decisions about my care. I just hope these particular decisions are right in the long run.

du Jour

2007-05-23T14:17:00.000-07:00

Today Djaca and I had lunch at du Jour, the restaurant run by the students of the Arizona Culinary Institute. I am completely stuffed and ready for a nap. What a treat that was! From the amuse bouche, to desert magnificent!

Djaca and I worked on my French. She is a patient teacher and hardly laughs as I slaughter a beautiful, lyrical language. We sat and talked about her life in Paris, our experiences as mothers and celebrity gossip while tuxedo-shirted waitstaff saw to our every need. Our server, Shelly, excitedly talked about her upcoming apprenticeship on a Hawaiian cruise line. I told her stories of working in Bermuda.

It was a lovely reminder that I need to treat myself from time-to-time and also that luxury need not be costly. The entire 4-course lunch was less than $20 a plate. If you have a cooking school in your town, check to see if they run a restaurant. It's well worth the time and the price.

The only down side is that du Jour is only open for lunch. And they are closed 1 week each month. Nonetheless, I will return and bring new friends to savor the food and wine and conversation. For that time, I was whole again.

http://www.scottsdaleculinary.com/dujour_restaurant.php

TMI

2007-05-21T09:21:00.000-07:00

Of all the weirdness that is me I will share the following facts:

As a child I had a traumatic experience with beets that I still will not talk about but beets will never knowingly pass my lips. Seriously, beets scare me.

As a child, Dickie Cordell chased me and threw his ice cream cone at me and it hit my leg and stuck and slowly slid down my leg to my ankle. The gross part was that Dickie was the fat mean kid in our neighborhood and the cone was filled with Miracle Whip. I can't stand the stuff and even the smell of mayo makes me nauseous. How many people do you know have had not one but two traumatic experiences with food?

I love, I mean L O V E cheese popcorn but I don't like having my fingers turn orange, so I use chopsticks. Works with Cheetos too.

When I'm really relaxed and breathing deeply, my nose whistles. This is especially annoying as I am trying to go to sleep. Sometimes it even wakes me up.

I am incapable of remembering numbers of any kind. What was 6 last time will be 32 the next and 3 the time after. Never rely on me to judge distance.

I can't carry a tune in a bucket but I love to sing. When my son was little and I would sing to him, he would put his hand over my mouth and say "Momma, don't sing."

Once I start reading a book, I must finish it; no matter how bad it is. I am a compulsive reader. My ex had it written into his will that there be no printed material of any kind within eyesight of his casket. He envisioned me grieving at his casket when the little "Made in China" tag would catch my attention. OK, it's funnier when he tells it.

Which reminds me, I cannot tell a joke. I always blow it. They're never funny when I tell them.

How about you? What makes you "weird?"

My Garden

2007-05-20T11:22:00.001-07:00

I've always felt good when my hands are wrist-deep in dirt. There's something very satifying in the smell and the feel of rich, cool soil and the crisp smell of green. For many years I worked to grow the perfect tomato. Extra hard to do in Arizona's harsh climate.

Since my spinal cord injury, that's felt out of reach. Then I visited my friend Wanda, a chair user for 40 years. She has the most beautiful garden that she tends by herself. And she grows the BEST tomatoes! Yum! If she can, I can.

Yesterday, I worked with a landscaper to design a back yard space where I could get out and garden again. Today, instead of seeing used coffee grounds and egg shells, I see compost. I can taste my tomatoes and basil now.

I'm eager for fall and the upcoming growing season!

SSDD

2007-05-18T18:53:00.000-07:00

Big sigh. I don't want this blog to be a continual rant about parking. I went grocery shopping today. Took all these pictures as I was looking for a spot for my van. These are just the 3 instances where the median was blocked so my ramp can't come down. This doesn't even consider the cars that didn't have a disabled driver or passenger. I just don't understand why people can't get it. Any ideas? If you're interested in seeing more violations, some incredibly outrageous, like a big rubber chicken, check out http://www.caughtya.org/

A picture worth a thousand words

2007-05-17T19:35:00.001-07:00

I am amazed that so many people have interest in this. So far though, no response from the Sheriff's office or the County Board of Supervisors.

Rather than retell the story, here are the links.....

http://www.kpho.com/news/13263383/detail.html

http://www.azcentral.com/phpAPP/mult...al.com/12news/
__________________

And print....

http://blogs.eastvalleytribune.com/view.php?op=ViewArticle&articleId=1088&blogId=32
http://www.eastvalleytribune.com/story/89356
http://www.kpho.com/news/13263383/detail.html

And, someone I don't know, posted this....
http://malaysia.answers.yahoo.com/question/index?qid=20070507133559AAEgGpX

Other Websites:

www.caughtya.org

http://www.badcopnews.com/bad_cop_news/arizona/

Today, my op-ed appeared in the East Valley Tribune.

Last week I came upon a situation in which I arrived at a local business to deliver a speech on accommodating persons with disabilities and ironically could not find a place to park because a Maricopa County Sheriff’s car was unnecessarily parked in what, at the time, was the only available disabled space. I am a wheelchair-user and require a ramp to enter and exit my vehicle.

I snapped a photo of the officer’s car and on Thursday, the EastValleyTribune.com ran the picture with a story entitled, “Deputy did not belong in handicapped parking spot.” I am surprised by how much attention this photo has received and at the comments posted in response to it. I’d like to share with you some of the details that didn’t make the story and respond to some of the comments posted thus far.

First, I did not mean this photo to be an indictment against law enforcement officers, Sheriff Joe or the MCSO.

I do, however, believe the photo epitomizes the situation people face when dealing with accessible parking. I expected a law enforcement officer to have more empathy and better understanding of how precious those accessible spots are for those of us who need them.

The original statements put forth by the MCSO did indeed take responsibility. But, the MCSO spokesperson went on to state “the lot was full, the deputy needed to conduct official business” and that the car was not parked there long. Almost everyone who inappropriately parks in accessible spaces justifies their actions in the same manner.

The missing details are thus. I did circle the lot and luckily the spot next to the deputy came available. I realized before I started down my ramp that there was not enough clearance at the bottom so I waited inside my van until help arrived. While waiting, I watched another woman with an accessible parking hang-tag circle the lot and end up parking in a spot rather far away. This elderly woman hobbled up to the building on her cane past the inappropriately parked deputy’s vehicle. I wonder what she thought as she passed. Some have said “no harm, no foul.” I hope you’ll agree that this would be a much different story if that woman had fallen in the lot and broken her hip; or, if I had gotten to the end of the ramp and remained trapped there unable to wheel up my ramp backward and unable to go forward. As a person with a spinal cord injury, I am far more susceptible to heat stroke than an able-bodied person. Indeed a friend died last summer after been trapped outside for about 20 minutes.

What if the deputy had parked there after I had exited my vehicle and prevented me from getting back into my van? This often happens in parking lots.

As for how much room it takes to maneuver, wheel chair ramps have wings on the sides to protect us from falling off. I must clear the ramp before I can turn. My knees were against the deputy’s vehicle and I could not get the extra inch I needed to clear. These spaces tend to be quite tight.

I too become frustrated when I see people abusing the privilege of accessible parking. They know who they are. I would welcome stricter enforcement of the privilege.

Please realize that for many of us, those spots are our lifeline to living a “normal” life, whatever that may be. I need room for my ramp so that I can get out of my vehicle to work, shop, worship and do all the same day-to-day things that anyone else does. In my wheelchair, I am about the height of your average 10 year old. Wheeling through parking lots can be quite a challenge when cars don’t see me. The accessible spaces also provide a safe route in and out of the building.

My hope in publicizing the photo was that the public would take a moment and consider the importance of accessible parking and the importance of those median spaces in between. If you are not the disabled driver or passenger that was assigned the permit, don’t use it. If you are that person and you are not getting out of the vehicle, don’t use it. Please don’t park your motorcycle or shopping cart in the medians between accessible spaces. I’m not asking that you make my life easy. I just hope you won’t make it impossible.

My first post

2007-05-17T19:18:00.000-07:00

I have finally given up on my other blog. If you are interested, it's here http://360.yahoo.com/jenlongdon

Don't know that I have anything interesting to say but here goes!