Reflections for Labor Day Weekend: Until There's a Cure…There's a Telethon

This weekend is Labor Day which means picnics, BBQs, and relaxing afternoons spent enjoying the last few days of summer. For me Labor Day weekend always brings back memories of the Jerry Lewis MDA Telethon. I vividly remember the first one I watched in 1979 because I watched and learned about neuromuscular diseases while we were in the process of packing to evacuate from our home on the coast in Florida as Hurricane David, a deadly Category 5 storm, approached.

Years went by and I did not think much about the MDA Telethon again until I became a firefighter. On Labor Day weekend fire departments across the nation support the MDA with their “Fill the Boot” campaign.

Now many years later I watch the telethon every year with a mix of emotions. This is my 10-year anniversary of being diagnosed with the neuromuscular disease Charcot-Marie-Tooth Disease (CMT). Luckily the effects I experience from CMT are very mild—the worst being some pain with walking or prolonged activity as well as overall fatigue. I am blessed that this disease will not shorten my life, but this is not the case for many of the more than a million Americans who suffer from neuromuscular diseases—diseases such as Amyotrophic Lateral Sclerosis (ALS) which can cause death within 3-5 years.

While my health insurance covers all of my treatment for CMT, it does not cover the research that is needed to find treatments and cures for these diseases. Since many of these diseases have had their genetic cause identified there is a good chance that they can be cured or at a minimum have reduced pain and suffering through stem cell therapy or other forms of treatment.

As you celebrate Labor Day weekend with your families and friends please consider a small donation to the Muscular Dystrophy Association during the telethon, online, online auction, or if you see firefighters collecting for Jerry’s Kids, fill their boots! Every penny raised counts and goes to benefit the lives of more than a million Americans afflicted with neuromuscular diseases.

Some facts:

  • MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The Association also provides comprehensive health care and support services, advocacy and education.
  • The majority of contributions to MDA come from individual donors.
  • MDA is the largest nongovernmental sponsor of muscle and nerve disease research.
  • Funded almost entirely by individual private contributions, MDA seeks no fees from those it serves.
  • MDA dedicates 78.3 cents of every dollar it spends directly to research, services and education.
  • MDA sends more than 4,000 youngsters with muscular dystrophy to accessible MDA summer camps each year, at a cost to MDA of $800 per camper. There’s no charge to families.
  • Tens of thousands of people visit MDA’s 220 clinics and 35 MDA/ALS centers every year.
  • MDA awards research grants to more than 300 teams of scientists and physicians worldwide.

Thanks for taking the time to read this post and have a safe and relaxing holiday!

ASTD Board Member

Last month I was elected to be on the board for the Charlotte Chapter of ASTD. I’ve been a member of ASTD on and off for about nine years and am excited about serving on the board for such a great chapter.

Tomorrow I am headed to Arlington, Virginia for the ASTD Chapter Leaders Conference. The lineup of speakers is impressive, and I’m really looking forward to hearing Bob Pike–the guru of all things training/learning.

Opening General Session: Afterburner
Working together to sculpt a masterpiece—tips from fighter pilots on achieving optimal team performance

Keynote: Andrea Nierenberg
The Art of Networking and Relationship Building

Closing Keynote: Bob Pike
Sculpting a “Successful Attitude”: How You Think Does Make a Difference

There are lots of concurrent sessions as well.

I’m also looking forward to seeing my friend Paul Signorelli and meeting some new faces in learning.

The long and winding road…how I got into libraries

Beth Tribe tagged me for the “how I became a librarian” meme. It’s funny I’ve been debating since August whether or not to write this post, but I’m a firm believer that we learn from each other. So here goes.

Since I was in about 6th grade I wanted to be a college professor–of Astronomy. I excelled in elementary and middle school. High school on the other hand did not challenge me, and as a result I was not interested in learning. Given all that upon graduating high school I had two scholarships–a 3-year ROTC scholarship to FSU and a cosmetology scholarship to our local vocational school.

My parents encouraged me to get a “good job” as a secretary.

I spent that first summer out of high school working as a summer camp counselor for the YMCA. That was one of the hardest and most rewarding jobs I’ve ever had. It was there that a coworker encouraged me to apply for EMT training. I was accepted and had my scholarship transferred from the cosmetology program to the EMT program.

From the first night of class I knew that this was the place for me. I loved the practical education. I loved the clinical rotations in the hospital and fire station. I became known as the “trauma queen.” Whenever I arrived for an all-nighter at the fire station the fire fighters knew they would get no sleep. I think I set a record for the number of trauma calls during one semester.

During the course of my training and years as an EMT and firefighter I’ve held a human heart in my hand as it stopped beating, recovered bodies from a plane crash, crawled under a car to administer first aid to a trapped patient, seen the results of not wearing a motorcycle helmet, been shot at, and cried with a patient as he died from cancer. I’ve also been called on to “assist a citizen” who had a duck in her yard.

One of the other things I learned about myself was that I loved training. I became certified to teach CPR, first aid, and EMT classes. I think I was one of the youngest trainers in the area.

As you can imagine being an EMT and a firefighter is intensely physical labor. A few years of this took a toll on my body and I transitioned to a job as an emergency dispatcher. Now I was like a fish in water. I loved the fast pace, multitasking, planning, and technology. A fellow dispatcher and I became friends and she told me I “had” to meet her brother. To make a long story a little bit shorter. Her brother (now my husband) and I wrote letters (yes snail mail) for a few years until we finally met. About two months after meeting in person I left my job and the career I had established and moved from Florida to North Carolina with no job in sight. It was a leap of faith (and love).

I decided I wanted a change in careers. I had a few jobs here and there (bank teller, waitress, receptionist, computer trainer) and eventually landed a job working for Microsoft. As a support engineer for Microsoft Access I provided support to customers around the world. It was a great environment to work in, but the thing most people don’t realize about a company like this is that they hire only the best of the best. Previously I’d always been the star. Working at Microsoft is like being the valedictorian of your high school then going to an elite university where everyone else was was valedictorian too. Keeping up with the techies was a struggle, but the awesome thing about Microsoft is that their culture is not hung up on degrees. In fact, Bill Gates dropped out of college to found the company. Although I had taken college courses here and there, this was reassurance that I could put off completing my degree even longer.

In the Spring of 1999 I began having symptoms of carpal tunnel syndrome. I saw doctor after doctor and had test after test. Technicians thought the nerve conduction machine was broken because there was no response no matter how high they turned it up. When they brought in a class of medical students I knew something was really wrong.

Eventually I was diagnosed with a form of muscular dystrophy called charcot-marie-tooth disease (CMT) just a few months before my wedding. I was told that the disease would slowly progress and that I may lose most of the use of my hands and eventually need a wheelchair. The diagnosis came as a huge blow to me. I had never suspected that I had any health problems. After all, I had been a firefighter. I had raised money for Jerry’s kids. Now I was one of Jerry’s kids?

Within two weeks I was laid off from Microsoft.

I applied and was interviewed for job after job in IT and training. The interviews went great. Until I disclosed my newly diagnosed disability and accommodations that I would need–such as voice recognition software to reduce the amount of keyboarding, handicapped parking, etc. By law I did not have to disclose my condition until after being hired, but I wanted to make sure that I went to work for a supportive organization. Besides who wants to start a job under false pretenses?

I remember seeing the job posted for an Automation Support Coordinator for PLCMC and thinking to myself. This is it. This is the job for me. I had always loved libraries and this job had computers, training, working with the public all in one. It seemed like the perfect job at the perfect time. I remember my interview like it was yesterday. It went well until the last question. “Can you perform the duties of this job with or without accommodations?” My heart sunk as I disclosed my condition. Elaine Novak reassured me that this would not effect the library’s decision and that there were other employees with disabilities. I left with a sinking feeling in my stomach.

Weeks went by without hearing anything. A month after my interview I received the job offer.

Nine years, a husband, and two kids later I have a job and career that I love in libraries. I’ve worked my way up to coordinating training for the library system. I’m getting started in consulting. My health is mostly good, and my condition has actually improved over the years. I can’t imagine working anyplace other than in a library. Next year I will graduate with my BS in Communication and then go on to graduate school. It is often a struggle to work full-time, have two kids, and go to school. But the experiences I’ve had are ones that have shaped the life I have now. Now seriously…can you imagine how different my life would be if I’d become a cosmetologist?

Since this is the meme that won’t go away, I’m tagging Marianne Lennox, Stephanie Zimmerman, Tony Tallent, and Helene Blowers. How did you get started in libraries?

I Voted

Today is the primary in Indiana and North Carolina. Record numbers of crowds turned out for early voting at the library last week. Normally I vote during early voting, but this year is different. This year I am an undecided voter.

Registered as unaffiliated, I get to choose which primary I vote in. It’s a toss up this year. The Republican candidate is pretty much already a given, and I am all for both of the Democratic front runners. Part of me feels it really doesn’t matter. It’s just a primary.

But something happened on the way to work this morning. I thought about all the women who came before me who fought so hard for our right to vote. Would I be doing them a disservice by not voting? Does apathy ever result in anything good?

I turned my car around and drove to my precinct. The parking lot was full, but I went in anyway. I knew that if I did not go first thing this morning I would keep finding an excuse not to do it. I only waited in line for about 15 minutes. While I was waiting I reflected on the excitement I felt when I turned 18 and registered to vote and felt even more so the first election I voted in.

I quickly but carefully cast my ballot and silently gave thanks to the many volunteers who work at precincts around the country.

To all my friends in Indiana and North Carolina, please go out and vote today!

Out of the Cube Farm!

One of my department’s goals during our reorganization was to have the Human Resources staff together in one location. Up until last week we had a staff of four in three different locations. Last week I moved into a great office with the other training specialist for PLCMC.

It is a beautiful office located in Virtual Village. I can’t believe what a difference it makes to be in a quiet office out of the traffic that flows through my old cube farm.

The room is partitioned by a 5-foot wall across the center. Julia is on the left side right as you walk in and I am hidden away on the right.

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There is also space in the corner for a small conference table, microwave, fax, and my tree that has followed me around the library during my 9 years here.

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