Some of the kids that I work with wanted to do the #IceBucketChallenge. Before we did it we discussed #ALS and civic engagement. Afterwards they dumped water on their heads and on me.
Random thought. . .
Premise Four: Civilization is based on a clearly defined and widely accepted yet often unarticulated hierarchy. Violence done by those higher on the hierarchy to those lower is nearly always invisible, that is, unnoticed. When it is noticed, it is fully rationalized. Violence done by those lower on the hierarchy to those higher is unthinkable, and when it does occur is regarded with shock, horror, and the fetishization of the victims.
Premise Four provides a great starting point if we want to understand what is happening in Ferguson, Missouri.
Short version – I am running the Chicago Marathon in honor of Ken Lempa, my dad. He was a runner and a victim of ALS. Please support my efforts to find a cure for ALS. Donation may be made online ( or by contacting me (8 lempa 8 (at) gmail . com). )
I ran my first official race this past Thanksgiving (2013). It was a fun Pi-K (3.14 miles. . .get it?) that involved a lot of pie. It was also two weeks before my 33 birthday. . .and my Dad’s passing. It was very important for me to run this race for two reasons. First I wanted to make sure that my Dad – a runner up until he could no longer stand on his own – would be able to hear about my first race. The second reason had to do with a memory. The first race that I ever saw my Dad run was a Turkey Trot. I remember that he gave me the sweatshirt from the run. A sweatshirt that I proudly wore for years.
Dad’s two year battle with ALS (Lou Gehrig‘s Disease) ultimately took his life and led to emotional distress for those he knew, but he always made it a point to encourage me. This was especially true when it came to my then new found love of running. He was one of the only people that didn’t laugh when I told him that my ultimate goal was to run a 100 mile ultra-marathon. In fact, his response was to tell me to get a good pair of shoes and drink a lot of water. I now run in top notch running shoes and carry at least 20 ounces of water on every run.
Shortly after Dad died I joined a half marathon training program. I knew that this would help clear my mind and keep me physically active. It worked so well that I then signed up for a marathon training program. Of course if you are in a marathon training program you also need to sign-up for a marathon. It was around this time that I was approached by my good friends at the Chicago ALS Association about joining Team ALS’s Chicago Marathon team. I thought about it for a few days and eventually decided that there was no better way to honor my Dad than to run a marathon in his hometown while fighting to cure the disease that killed him.
A friend recently asked me how I dealt with the pain inflicted on my family by this terrible disease. I told her that I still try to look for the positive aspect of even the most negative situation. I don’t think my Dad would want us to be sad. I think he would want us to enjoy life and do what we can to make the world a better place. Please join me as I support the ALS Association and every individual who has been touched by this awful disease.
Steve Gleason has done a lot to bring attention to Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig’s Disease). Please read this letter that he wrote to his congressional delegation. Living with such a debilitating condition is not easy. Government and insurance companies have the ability to make it just a little bit easier. Unfortunately they usually do the exact opposite.
An Open Letter to Louisiana Senators and Congressmen:
Dear Senators Landrieu, Vitter and all Louisiana Members of Congress,
Recently, legislation was introduced to ensure patient access to quality, complex rehabilitation technology. An example of that technology is my power chair. I cannot imagine living with ALS (or any other physically restrictive disease) without a power chair. It is not only a necessity, it is a means of independence for me and my caregivers. The bi-partisan legislation introduced is S. 948 and HR 942. While every organization that supports the care of people with physical limitations supports this, not one legislator from Louisiana has signed it as of today.
Adding to this, the Centers for Medicare & Medicaid Services (CMMS) have new rules which become effective April 1st. Exactly the opposite of the legislation above, these superfluous rules will inhibit people from having consistent access to essential communication devices. The term essential is not hyperbole. I use my eyes to type on one of these devices. Essential communication; from requests for food or water, to telling my family I love them, advocating at the United Nations, or open letters to policy makers.
While I am very fortunate to have the ability to own and customize my equipment, most people who are dealing with ALS, and conditions like ALS, do not. Living with a physically debilitating disease is not only a tremendous emotional burden, but a financial one as well. By taking away access to these devices, the CMMS is harming the very people the institution was created to help.
Imagine if your cell phone, tablet and laptop were taken away when you had a hospital visit. While it is logical to rent “simple” machines like a car or a pressure washer for periods at a time, renting complex and customizable technology like a cell phone, tablet or laptop is far less viable, especially when that technology is your only means of connecting to the world.
I was recently in a Microsoft commercial. The commercial shows how transformative technology has been to individuals and the world. Microsoft calls these technologies “empowering”. These new rules from the CMMS will quash the power that technology gives people like me… people who intend to be productive and purposeful.
Please sign S 948 and HR 942. And, please introduce immediately an exclusion for Speech Generating Devices (SGDs). Thank you for your attention to this important issue and for your voice in Washington, DC. Through your support, you will also safeguard the voices of thousands of others.
This year I am taking part in Leadership Lawrence, a leadership program based on the Kansas Leadership Center‘s Four Competencies – Diagnose Situation, Manage Self, Facilitate Intervention and Energize Others. I was drawn to this program after hearing how amazing, awful, and stressful it was. The neat thing is that the same people shared both positve and negative experiences with the program. This made the recommendations more real. . .more sincere.
On Monday, March 10 I had a blast speaking to Kim Murphree of Lawrence Hits about my experience (so far!) with the program. My interview starts at the 32:00 minute mark. Please ignore my cold and click here to listen: http://lawrencehits.com/wp/blog/podcast/leadership-lawrence-radio-hour-031014/
A number of upcoming projects have led me to revisit some of my past experience. I think this is called “dusting off the cobwebs.” Some of the dusting has been invigorating. Some has reminded me why I didn’t further explore those options.
Every so often I will post a link, article, story, or something relating to these experiences. The first Item I came across was an enjoyable documentary called Saul Alinsky Went to War. It is a look at the Alinsky model of community organizing put into practice. A paper on organizing models [pdf] describes the Alinsky model:
The community organizing model developed by Saul Alinsky owes its inspirations to the Communist theories of mass mobilization. Alinsky, on the lines of Marxist philosophy views the current capitalist economic and social systems problematic and the cause for all social issues such as crime, unemployment, inequality, discrimination, declined morality and environmental degradation. Alinsky emphasizes working within the system to change the system. Just like Carl Marx, Saul Alinsky has little discussion of how a society should be structured and its function after the successful revolution overthrows an 0ppressive dominant system.
Pop some popcorn, pull up a comfy chair, and click away!
On December 12, 2013 I received a phone call from my mom while my co-workers were wishing me a happy 33rd birthday. My Dad had lost a 2.5 year battle with ALS (aka amyotrophic lateral sclerosis; Lou Gehrig’s Disease). While his passing wasn’t unexpected, we didn’t think it would happen on my birthday. Needless to say I hopped in my car and started driving. And driving.
This trip was nothing new -hell I once road a 125cc scooter from Lawrence, KS to Chicago – but it was different. It was both longer and quicker. Further and shorter. Multiple text messages from my brother reminded me to be safe while at the same time telling me that I needed to get home sooner. Rachel checked in to make sure that I was OK as did a few of my closest friends. Gaslight Anthem’s ’59 Sound was on repeat.
The drive itself was mostly a blur. I do remember laughing and crying as long lost memories formed a mental collage. When I arrived in Berwyn I was greeted by my Mom and brother. We hugged, laughed, and cried.
Three months later it is still hard to believe that our family of five is now a family of four. This experience has both weakened and strengthened us as a family. I am grateful for my friends and family that supported me throughout this ordeal and have checked in on me afterwards. I might not always say it, but I love and appreciate you.
I am also extremely thankful for the ALS Association Greater Chicago Chapter. Without them I don’t know how we would have made it through this ordeal. They provided equipment, guidance, and emotional support. Additionally the ALS Association also supports research to fight ALS and discover a cure.
Last year I captained the top fundraising team in the Walk to Defeat ALS. This year we have reformed Team Lempa and are again raising money to find a cure to this horrific disease. You can support us by clicking here: http://webchicago.alsa.org/goto/ChrisLempa2014
PS – I will be participating in a number of runs throughout the year. I will use these runs to raise money for the ALSA and to raise awareness of this horrific disease.
I don’t like New Year’s Resolutions. For that reason I was very excited when I read about goal setting in Matt Frazier’s new book No Meat Athlete: Run On Plants and Discover Your Fittest, Fastest, Happiest Self. With that inspiration in mind, I will be spending a portion of today setting goals using the following 5 points as an outline:
- Get some dreams on paper.
- Set a timeline for each goal.
- Circle your top three one-year goals.
- Get specific about your three one-year goals.
- Make plans and take action.
Once I complete my goals, I will post them here as a way to hold myself accountable.