A personal appeal by Holly L.

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Recently, I was sitting in my floor sorting through old shoes. I came across the shoe in the picture. Its mate is missing, as is so much of my former life. I got all teary-eyed and found myself just touching the shoe ,and as my fingers ran over the sides my memories came flooding back.  I realize finding someone teary-eyed and caressing an old tennis shoe might not make much sense unless you understand the story behind it.
Way back when I bought these shoes as a  teenager, I bought them to primarily wear while I ran and worked out. Most of us wear this type of shoes into the ground until they are no longer functional and discard them.  However, I never got the chance to wear these down.  It was I who was discarded. They saw me through the runs that I did not really like, the walks I did like, and the workout video I probably tortured my dormmates with a bit too frequently. I wore these shoes the first time I checked out my university’s new gym. I wore them to go play (well, play at playing) tennis with my sister. I imagine they accompanied me to classes as well, as I was a full-time college student majoring in psychology with my eyes on becoming a counselor. I planned on one day receiving my doctorate. I am sure they went along on some late night adventures on campus. They could not accompany me to my part time jobs in the hospital as those required nicer shoes but they probably did the come along to the one at the snow cone place. In the summer, I worked 3 part time jobs to earn money for college.
These shoes represent the healthy me. The me that I was before M.E. came in and ravaged my body.  The me that could work, learn, play, serve, and worship freely. The me that I have lost to this illness. When I wore these shoes, I could push my body in exercise and it felt good even if it was hard. Then, exercise benefited me rather than stressing my body to the point of dangerous consequences as it does now. I could tell my muscle to do something and it would obey me. I had a surety of foot that cannot exist with my present neuro-immune illness.  I miss that me. I miss what that body could do.
If I could do even half of what I used to, then my life would be so immeasurably full. Perhaps, I would be counseling families as I wanted. Maybe I would have the multiple children I always wanted. I would not have had to suffer through wretched hospital stays and endless doctors’ visits. I would not have missed voting in my first presidential election because I was in the hospital. My family would not have had to take their college student back in who had so recently moved out for independence.  I could work and care for my family better. I could contribute more to society.  My life would be infinitely better if this illness received the research funds to adequately perform quality biomedical research. So many hurtful doctors’ visits would not have happened had medical personnel received adequate training about this illness. If people understood this illness better, perhaps I could get accommodations that would allow me to live my life more fully.
This brings me to why I was going through my old shoes that caused this moment of teary remembrance.  Sorting through old shoes is something we might do in the midst of a spring clean but I was doing it to find a pair to send to Washington D.C.

Why are you sending shoes to D.C., you ask?

Great question!  I am sending my shoes to Washington D. C. to represent me in a #Millionsmissing demonstration at Health and Human Services on March 25, 2016.

Who are these millions and why are they missing?

I am only one of millions who battle an illness called myalgic enecephalomyelitis (M.E.) We are missing from our normal lives, from work, from society, from church, from family and friends. We are hidden away suffering untold horrors in darkened rooms. Many of us are unable to go out and represent ourselves at demonstrations.  A brave group of people are gathering up shoes from those of us able to send them and demonstrating outside HHS in D.C. and many other cities to present our demands for increased biomedical research, awareness, and education for medical personnel.

What are the demands of this protest?

I touched on the ideas above in ways that my life could be better. Here is a list of the demands and a detailed explanation : http://millionsmissing.meaction.net/protest-demands/<

How can I participate?

If you live in one of the cities with a demonstration, the organizers would love to see you ! You can find more info here: http://millionsmissing.meaction.net/  If you do not live nearby but would like to participate they have several ways to participate virtually. Lots of info on that here : http://millionsmissing.meaction.net/virtual/
There are several simple ways you can help. Change your profile picture. Share information on May 25th the day of the protest.  Place shoes on your doorstep in solidarity with these ME warriors and share the photo. Donate to the demonstration here http://millionsmissing.meaction.net/donate/ . Participate in whatever way you can. It will be much appreciated by the #Millionsmissing.

Can I speak to my elected official about this?

Yes, please do! Our elected officials do want to hear from us and the more people they hear from, the better. I was honored to have a phone meeting with a staffer from Senator Lamar Alexander’s office in August of 2015 regarding my concerns with ME and requests for funding from the NIH. I am so grateful that those of us in Tennessee have Senator Alexander to turn to at this time. He serves as the Chairman of the Health, Education, Labor and Pensions committee.  I hope to have more meetings in the future where I can express the concerns of Tennesseans with ME. We have begun an MEaction TN group and we’d love to have all of those with an interest in this to be a part of it.
I also plan to reach out to  Senator Bob Corker. I am so proud of his work on the End Slavery Act. I cannot help but think he will understand the plight of those with ME as well.
I am excited about sending this information to Representative Stephen Fincher as well. These representatives represent you in a special way as they are familiar with your area of the state and the issues in it that affect you. Let’s utilize that. They want us to!
Please, please join me in talking to your local and state representatives. I had written Jimmy Eldridge, my representative to the TN house of Representatives, about my concerns to end the backlog of rape kits and one of his staffers was great about looking into it and responding. I should have written him sooner with my concerns about ME as well.
Find your senators here : http://www.senate.gov/senators/contact/
Find your representative here: http://www.house.gov/representatives/find/
Tennesseans find your representatives here: http://www.capitol.tn.gov/legislators/
Thank you so much for doing all you can.  Together, we really can make a difference in countless lives.

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6 thoughts on “A personal appeal by Holly L.”

  1. Jaime, thank you for this. It is very moving and oh my goodness, does it sound familiar – you describe so well that old feeling when exercise used to such a great experience, instead of impossible, or if possible, terribly damaging
    Some similar shoes of mine have, hopefully, arrived in London for the UK shoe demo, to be joined by many others, I hope.

    1. Findlow,
      Just to clarify! This one is by Holly L; I just posted it. 🙂
      Thank you so much for the comment!
      Jaime

  2. Theresa Schroeder

    I appreciate the comments here. But they seem to be from last year! As someone with ME/CFS, I understand the difficulty of verifying and reading frequent posts. Am I missing something? I just joined, son perhaps I’ll get more info soon. I was really encouraged by Knoxville lighting the Henley St. Bridge this year. Before reading aboutvthatvon Twitter, I didn’t know there was an ME group here.
    Thanks!

    1. Sorry, this was an article from last year! To find out about new protest information, visit http://millionsmissing.meaction.net/. To keep updated about #MEAction’s current goings-on, subscribe to our newsletter. We promise we send out emails once a week around the protest (during ‘crunch time’) and less often otherwise. We won’t spam you. 🙂

    2. Hi Theresa! If you are interested in joining us for TN advocacy efforts, please join our Facebook group MEAction TN. We also have a regular Facebook page. We would love to have you.

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