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Thread: My Working 2 Walk Symposium/Rally Report

  1. #1

    My Working 2 Walk Symposium/Rally Report

    I appologize that it took me so long to post this here. This originally started out as an email that I sent out in May to the 100 people on my mailing list. I tweaked it and changed a few thing so I could share it with people that may not be familiar with me or my journey. I must warn you that it's nearly 8 pages on Word, so prepare yourself.


    My name is Joe White. In July of 2003, I sustained a C6/7 spinal cord injury when I was thrown from a mechanical bull at the county fair. Since then I have been an advocate for spinal cord injury awareness and a cure for paralysis. This spring I went to the Working 2 Walk Symposium/Rally, in Washington DC, to support the passage of the Christopher Reeve Paralysis Act (CRPA) and to educate myself in the areas of paralysis research and advocacy efforts.

    I didn’t head out alone. Brenda Patterson went with and was a huge help, not only to me, but also to everyone around us. She has developed the same passion for learning about spinal cord injury (SCI) research and advocating for awareness and quality of life issues that I have. She has been supportive and helped out on any project that I’ve needed help with, and I think that since she went back to school most of her papers and speeches have been on the topics of SCI, the CRPA, or stem cell research. I only recently found out that after she finishes her undergrad, she plans on going to lawshcool to practice disability law.


    Saturday - April 29, 2006


    I started this trip just like I start every trip, with no sleep. It seems that I get too excited before any big trip to get any sleep. We left for the airport at 3 am on Saturday morning and got into DC around 9 am. The flight was pretty uneventful, but getting to our hotel in Crystal City, VA was fun. There is a little bus that will take you to the Metro station, and then a train takes you to the Crystal City stop. From there, we had to find the Hampton Inn. I had a map, but it wasn’t very detailed. After a short scenic detour in the wrong direction, we asked a local woman for directions and she pointed us towards our hotel. Crystal City is a nice place to stay. It’s just about a ten minute Metro ride outside of DC, into Virginia. It’s far enough away from everything that it’s calm. There’s enough space for local and chain restaurants. It goes like this… there’s DC, then a river, then a highway, then Hotels, and then houses. I liked it a lot. After we got checked in, I took a much needed, two-hour nap. Then Betheny called and wanted to go sight seeing. We took off to go meet Betheny, her son Jake, and this guy named Todd. Todd was an interesting story and a really nice guy. Betheny had met Todd through Unite 2 Fight Paralysis. I guess he was a huge fan of Christopher and Dana Reeve. He followed Dana’s singing and both of their acting and careers. Todd was looking around on the Christopher Reeve Foundation website and happened across the Working 2 Walk Symposium/Rally. He admired what was going on and wanted to support he cause. I find this part to be pretty amazing. He just wanted to help, so he came down from New York to join in our efforts. Todd doesn’t have a SCI, nor does he have a family member with a SCI. He has no connection to spinal cord injuries other than wanting support a worth wile cause. It’s awesome that there are people like that in this world. Any way… the four of us had a great time. I got to teach Betheny how to use an escalator in her chair while we were scouting the way to the Ronald Reagan Convention Center for the next day. She has limited hand function, so her son had to stand behind her to make sure she didn’t fall. It was a blast. Later that night we went out for Mexican food with Todd, Betheny, and her family; and then spent the rest of the night hanging out in the hotel bar meeting people. By the time I went to bed I had been up for 42 hours, with a two-hour nap in there somewhere.

    The Science Symposium – Sunday, April 30th


    In the morning, we met up with a bunch of people to travel to the symposium together. Since I had talked Betheny into using the escalators the day before, she wasn’t as familiar with the elevator locations as she wanted to be. I got a kick out of this, because she went up the elevator specifically to see where it was the day before. Not everybody can or wants to try the escalators. Then in the train station, Betheny and a group of people kinda jumped the gun and got on the yellow train instead of the blue train. They both get you there, you just have to transfer with the yellow line and we decided the day before that blue was better. Well, we all made it there eventually, just a little bit late. We still got to hear from Dr. Hans Keirstead, and others speak about emerging therapies in person. Dr. Keirstead went into more detail about the study of his that was featured on 60 Minutes. He was able to direct stem cells to become a certain cell type, called a myelinating oligodendrocyte. When implanted into the spinal cord, these cells wrap around the damaged nerve cells to repair the covering, or myelin sheath. Repairing this covering makes it possible for the nerve to carry the impulses again, therefore restoring function. Dr. Marie Filbin talked about a substance called cyclic AMP (cyclic adenosine monophosphate). Research has suggested that this substance can turn on growth factor genes in nerve cells, stimulating growth and helping to overcome signals that normally inhibit regeneration. The last thing I found interesting was the summary of 4-Aminopyridine (4-AP). In theory, it improves the conduction of demyelinated or damaged nerve cells. In people who have this condition, such as in multiple sclerosis, Gullain-Barre, or spinal cord injury, the drug should improve conduction and therefore motor, sensory, and autonomic function. I was on this drug for quite some time and it improved my strength, dexterity, and sensation. It was neat to hear about it from the scientists.

    Next was the state of rehabilitation research. I learned how therapies have moved from compensatory to activity based. It used to be that they taught you how to use a wheelchair and other things to compensate for your injury, but now activity based therapy incorporates specially designed rehabilitation therapies and exercises to help individuals with spinal cord injuries improve their overall health, strengthen their bones and muscles, and possibly regain the ability to feel and move. The use of FES bikes (functional electrical stimulation), suspension treadmill therapy, and aqua therapy are all relatively new concepts. Susan Harkema from the University of Louisville described the NIH clinical trial that she had participated in, showing the surprising finding that over 90% of people with an “incomplete” spinal cord injury recover walking. It was a very exciting and educational morning. I have never been one to hang on to the idea of a “Cure”, but I think that with a combination of the previously mentioned therapies, big things are on the horizon. Imagine remyelinating most of the damaged axons, growing new axons, and then improving the conduction along the still damaged ones. Add all of the activity based therapy to the mix and the possibilities are unlimited.

    During lunch, we heard from Dr. Naomi Kleitman. She is the Program Director of the Spinal Cord Injury Program and extramural research at the National Institute of Neurological Disorders and Stroke (NINDS) at the NIH. I know that’s a lot. According to Medicine.net, The National Institutes of Health (NIH) is an important U.S. health agency. It is devoted to medical research. Administratively under the Department of Health and Human Services (HHS), the NIH consists of 20-some separate Institutes and Centers. These Institutes and Centers represent NIH’s program activities. She heads up the National Institute of Neurological Disorders and Stroke. It is just one of those institutes. Their mission is to "support and conduct research and research training on the normal structure and function of the nervous system and on the causes, prevention, diagnosis, and treatment of more than 600 nervous system disorders including stroke, epilepsy, multiple sclerosis, Parkinson's disease, head and spinal cord injury, Alzheimer's disease, and brain tumors." I felt like I learned a bit more about how the government works. It sounds like she works hard on behalf of neurological disorders and is a good ally to have in the NIH. She seemed to have some personal opinions or thoughts that she couldn’t voice, because she is a government employee. When she was done speaking, Professir X (aka Richard Gaskin) performed. Professir X is a quadriplegic rapper that was shot in the neck in 1987 and instead of giving up he decided to use the gifts that God gave him to inspire the children and adults. Check out some of his videos. http://www.professirx.com/info.html
    After lunch we heard from a panel of advocates. These were people whose lives were personally affected by spinal cord injuries. Some had spinal cord injuries themselves and some had family members with spinal cord injuries. The most memorable was a man named Joseph Briseno. Two years ago his son, Jay, was shot in the neck while serving in Iraq. This left Jay with a very high SCI requiring round the clock intensive care. A very close family, the Brisenos refused to institutionalize their son. Instead, they set up an intensive care unit in their basement so Jay could live at home. The entire family pitches in for the round the clock care that Jay now requires. Joseph left his job to help care for Jay and become an advocate for a cure for spinal cord injuries. It just floored me to listen to everything that this family has been through. It was such an emotional story that there was hardly a dry eye in the place.
    I must say that I find Restroom conversations fascinating at times. It seems like the most unlikely place to have an intellectually stimulating of informative conversation. I’m not sure what social structure of a women’s restroom has, but I usually like to do my thing and get out of there. It turns out that they can be informative. I had a fifteen-minute long conversation with Dr. John McDonald about the ineffectiveness of baclofen. Baclofen is an antispasmodic drug that I’m on. It turns out that it’s ineffective in the way of helping your body heal from a spinal cord injury. In fact, it inhibits regeneration in SCIs and only masks the underlying problems. I knew it was bad, but what are you supposed to do when your legs want to do something completely different than you want them to do. Dr. McDonald suggested that I come off of it and control my spasms with alternative means. I am on the highest dose of baclofen and another drug to subsidize. That makes me think that it may be easier said than done, but I have to contact him to get further in to it. I think we were both tired of being in the restroom, so we ended the conversation there.
    The final panel of speakers was supposed to be talking about building a clinical trial network. Instead the three presenters just described the clinical trials that they participated in. It seemed like these guys forgot that they weren’t speaking to a room full of doctors. It was long, drawn out, and used a lot of terminology that went over many people’s heads. I have to say that I pretty much lost interest and only stayed to hear Dr. Wise Young speak. Unfortunately, they were too short on time for Wise’s entire speech. He wasn’t going to speak at all, but we convinced him otherwise. You could tell that he was also frustrated with the other three guys. After letting them know that they took too long to say not enough, he had time to make three points. “First, he talked about the many therapies that are waiting for clinical trial. He said that we need clinical trials to move therapies from laboratories to people. Second, clinical trials have one other purpose besides finding therapies that work. They will tell us which therapies don’t work and are unsafe. We shouldn’t be spending our time and resources on therapies that don’t work or are unsafe. Third, almost all scientists believe that there will be therapies that will restore function to people with spinal cord injury, that it is not a matter of if but when such therapies will become available. Of course, how long it takes is a matter of how hard we work, having sufficient funding, and being a little lucky. Luck is important because we don’t have the resources to investigate every option.” I found this link at the Christopherreeve.org Resource Center. It is a trailer from the last symposium and gives you a good idea of what this one was like. It’s long, so watch it when you have lime.

    It was a very long day. The symposium didn’t end until after 5pm, so by the time we got back to the hotel, it was time to meet people for dinner. We had quite the large group for dinner too. We met with the Smiths, Marilyn, John, Isaac, and Noah; Sue Maus and her husband, Colin; Betheny, her husband Steve, and son Jake; Eric, Todd, Brenda, Kiran, and me. We had called ahead to make sure there was enough room for all of us at the Top Thai Restaurant. After all there were 5 wheelchairs in the group. I’m not sure why we did that, because when we got there, nearly 45 minutes later, they still weren’t ready for us. It was nice to hang out with and get to know everyone a little bit better, even if the service wasn’t the best. After dinner we went back to the hotel to socialize and network at the bar again, until way too late. I had a hard time sleeping this night too. I was nervous about my speech the next morning.

    The Advocacy Symposium – Monday, May 1st


    I was a nervous wreck all morning. I almost couldn’t get dressed, because my body was going crazy. Spasms and stiffness like you wouldn’t believe. We finally got to the Ronald Reagan Convention Center and we were early. I know, I know… you can pick yourself up off of the floor now. We got there early enough for me to buy a couple more t-shirts, visit a little, and most importantly calm down. I was in the middle of eating a doughnut when I was called to go on stage. For some reason I just stuck it in my shirt pocket and rolled onto the stage. I’m not sure why, it’s not like I was going to be able to finish it up there on the panel. We were up there to tell our stories, what we have done in the realm of advocacy, and what others can do to help. Chris Chappell and Sue Maus are founding members of Unite 2 Fight Paralysis. Sue talked about setting up the rally, contacting the press. Chris talked about U2FP and visiting hospitals and scientists. Kris Gulden suggested writing letters to the editor of your local paper, writing opinion editorials for major newspapers across the country, calling your elected officials, wearing your Superman dog tags and being visible, or just talking to your neighbors. She said, “I believe that each person has an ability to make a difference.” Don Reed stood up and spoke about his son Roman and how they helped develop and pass the Roman Reed Spinal Cord Injury Research Act and Proposition 71 in California. Carl Richards runs a website called linksforcure.com and is an active advocate. Bob Mulcahy is an ambassador for the Christopher Reeve Foundation, has successfully lobbied all of the lawmakers in his state, and is now working on other states lawmakers to support the CRPA and the Stem Cell Research Enhancement Act (SCREA). I just got up there and tried to talk about the things that I have done, how I did them and what else I think can be done. I wasn’t sure how I sounded. I got a bit stage frightened while I was up there. My vision got blurred and I felt rushed. Apparently it went well, because over the next day and a half a number of people told me that my speech and I were creative and inspiring. That made me feel weird and really good at the same time. I hope that people take that inspiration all the way home and put it to good use.

    After lunch, we heard from the Christopher Reeve Foundation. They presented some lobbying tips and talking points for our legislative meetings. Number one was the CRPA. We went over the four titles and prepared for any questions that the senators, congressman, or staffers might have concerning the CRPA or it’s funding. The next was NIH/CDC budget with detail to funding of the Christopher and Dana Reeve Paralysis Resource Center (PRC). $6 million of federal funding has been cut to this very important resource. The third talking point was the SCREA. This could only be addressed to certain members of congress though. Some members just stop listening when you mention stem cells and since the CRPA ahs nothing to do with stem cells we didn’t want them to stop listening.


    Rally Day – Tuesday, May 2nd

    This was the day… the day the whole trip was built upon. We had stayed up in Betheny’s room for quite some time the night before, helping her with her speech. She had it written already, but she needed people to read it to and to bounce ideas off of. It was an honor and fun to be a part of that process. So we got up early again and made it to our destination early again. Can you believe it? It was a very exciting morning. I knew Betheny’s speech and we had the job of initiating applause at the proper time. The energy was overwhelming. Betheny was looking awesome in her bright red suit, the stage was set, and everyone was getting ready to start. The next thing I know, I hear someone say, ”Betheny wants you on stage, Now!” She had asked Steven, Kiran, and me if we would share the stage with them. We all gladly accepted. I guess we filled out the stage and helped keep the ones speaking a bit calmer. It was so amazing to be right in the middle of things. This added to the rush of speaking the day before was incredible. So there I am sitting on stage next to Noah and Kathy Lewis, the CEO of the Christopher Reeve Foundation. I glance over to see who’s next to her, and it’s Susan Serandon. Later while Susan Serandon was speaking Hillary Clinton filled that seat. Holy crap! That’s our former first lady. I was star struck, but comfortably star struck. I could probably get used to this. So I sat on stage while these incredibly motivating and powerful people spoke on our behalf. Betheny Winkler, from Unite 2 Fight Paralysis, emceed, Kathy Lewis CEO of the CRF, Brooke Ellison, motivational speaker and New York State Senate candidate, Noah Smith, activist, Jesse Billauer, from Life Rolls On, Dr. Wise Young, from Rutgers University, Senator Hillary Clinton, Senator John Kerry, Senator Tom Harkin, Congressman James Langevin all spoke with conviction and passion about the urgency and importance of the Christopher Reeve Paralysis Act. Professir X did a couple of songs again at the end of the rally too. Coming down off of the stage and weaving in and out of reporters and TV news crews to congratulate and support our friends was a new experience for me to. A Chicago PBS reporter interviewed me, but I haven’t seen it air yet. I still have to contact her. It was so incredible to be up there. After Hillary spoke, she walked across the stage and thanked every one of us while shaking our hands. Did I say star struck yet? We also grabbed Susan Serandon for a “photo op”. After that experience and presentation, we were ready to go see our senators and urge them to support the CRPA.

    The main focus of the trip, for me, was the passage of the Christopher Reeve Paralysis Act (CRPA). This is a bill that if enacted into law, has the potential to help over 2 million people in the United States that suffer from paralysis. According to the Christopher Reeve Foundation,
    “This bill is primarily about two things: advancing collaborative research in paralysis and improving the quality of life today for people living with paralysis. The CRPA encourages coordination of research to prevent redundancies and hopefully hasten discovery of better treatments and cures and, as importantly, to improve the daily lives today for those living with paralysis.

    The CRPA has four components that support and enhance paralysis research, rehabilitation, and quality of life programs.
    · Title I Paralysis Research. Expands research on paralysis at the National Institutes of Health (NIH). This centers on encouraging collaborative research – connecting scientists doing similar work to enhance understanding and speed discovery of better treatments and cures.
    • Title II Paralysis Rehabilitation and Care. Builds on research to enhance daily function for people with paralysis including a Clinical Trials Network to measure effectiveness of certain rehabilitation tactics and encouraging shared findings on paralysis to improve rehabilitation.
    • Title III Improving Quality of Life for Persons with Paralysis and Other Physical Disabilities. Works with the Centers for Disease Control and Prevention (CDC) to improve the quality of life and long-term health status of persons with paralysis and other physical disabilities.
    • Title IV Basic Rehabilitation and Health Sciences Research: Utilizes the Veteran’s Health Administration facilities to improve paralysis research by tracking data within the world’s largest system of hospitals. “
    The CRPA needs to be passed as soon as possible. The US is falling behind in this type of research. Scientists are going outside of the country to do the research and US citizens suffering from paralysis are going to other countries to be treated. Often these clinics are charging excessive fees for unproven and sometimes unsafe therapies. There is no reason that we as US citizens should have go abroad for treatment. We need a clinical trial network set up in the United States and the CRPA addresses that issue.

    The CRPA requests $100 million over a 3-year period, to establish the infrastructure for clinical trials for therapies to reverse paralysis. The estimated annual direct costs of care for Americans living with paralysis due to spinal cord injury are $15 billion. It is one of the costliest conditions in our country.
    Even modest improvements in function; allowing a vent dependent quadriplegic to breathe unassisted and returning hand function to many others, would decrease medical and other costs of care by an estimated 60% or $9 billion annually. Over a 10-year period, without adjusting for inflation, the savings add up to over $90 billion.

    We took this and more information to our lawmakers to convince them to support the CRPA by co-sponsoring the bill. One week before the Working 2 Walk Rally, Brenda and I went to visit Representative Pete Visclosky. We only got about half way through our presentation of the CRPA before he cut us off. Representative Visclosky then said that he would co-sponsor the CRPA and to look for his name on the list. The next week, we had our appointments with the Washington DC offices of Senator Bayh and Senator Lugar. We left the meeting with Senator Bayh’s legislative aide feeling confident that he would relay all of the information. The aide said that the CRPA sounded like a piece of legislation that the senator would support, and I think that with a little bit of urging or a follow up meeting Senator Bayh may become a co-sponsor. Our meeting with Senator Lugar’s legislative aide didn’t leave us with the same optimism. She said that the senator doesn’t like to co-sponsor bills for a variety of reasons. She also said the issue was further complicated by the fact that this is an election year and that we should just try to reintroduce the CRPA in the next session of congress. We told her that that was unacceptable and that just the opposite needed to happen. The more co-sponsors that the CRPA gets, the more likely it is to come out of committee and get voted on. I am going to try to set up an appointment with Senator Lugar the next time he is in his Valparaiso office, to discuss the CRPA with him in person.

    Did the Working 2 Walk Rally do any good? This comes directly from Unite2FightParalysis.org,

    “Our visit to Washington directly resulted in 2 new Senate co-sponsors for the Christopher Reeve Paralysis Act, plus 10 more in the House of Representatives! Co-sponsor lists which are updated daily can be found here: House of Representatives 1554 and Senate 828.”

    I greatly appreciate all of your support. Without some of you, this trip would not have been possible. If I could ask for one more thing… Would you please check this list to see whether your legislators are co-sponsors or not. If they are please thank them, if not please write, call or email them urging them to support the Christopher Reeve Paralysis Act. If you have any questions that I may be able to answer, I can be contacted at 219-531-0055 or heyjoewhite@comcast.net.

    Thank you all,

    Joe



    You can use this page on the Christopher Reeve Foundation website (christopherreeve.org) Find legislators here. When you contact your lawmakers, you can write your own letter or use the form letter from christopherreeve.org. (CRPA form letter)


    Please visit these websites when you get a chance:

    Working 2 Walk Symposium/Rally
    http://u2fp.org/Work2Walk/index.htm

    Unite 2 Fight Paralysis
    http://u2fp.org/

    Christopher Reeve Foundation
    http://www.christopherreeve.org

    Care Cure – an online spinal cord injury community
    http://www.carecure.org


    Working 2 Walk Symposium/Rally picture sites:

    My DC Pictures
    snapfish.com http://www1.snapfish.com/share/p=668...=SYE/otsi=SALB

    My favorite DC pictures stolen from other sites
    snapfish.com http://www1.snapfish.com/thumbnailsh...43/t_=50076443

    Other picture links hosted by U2FP
    http://u2fp.org/Work2Walk/Photo%20Albums.htm

    P.S.

    I bet you thought it was over. The advocacy and networking doesn’t ever end. I came home with 11 different cards and numerous scraps of paper, all from people that I have to contact in the near future. They are all for SCI networking and/or new friends. Maybe I can do something for them, they can do something for me, or maybe we just hit it off and want to keep in contact. Case in point, we shared a plane to Chicago with Shelley and Cody Unser. Cody has a foundation called, the Cody Unser First Step Foundation. They are doing a lot of stuff; raising awareness, raising funds, spreading hope and knowledge and more. The one that I’m most interested in at the moment is a quality of life program that they have called Cody’s Great Scuba Adventure. http://www.codysfirststep.org/scuba.htm Unfortunately I won’t be able to participate this year, but I hope to be there next year.

    Well we made it home and jumped right back into life. It was an educational, exhausting, productive and fun five days. I will keep all of you up dated as more and more things happen. Until then, thanks again for your support and take care.

  2. #2
    Very nice write-up, jOE. Much of this belongs in the Cure forum-it would get tons more reads there.

  3. #3
    Well... Maybe someone will copy or move it then. I just want to share it with anyone that wants to read it.

    Oh yea, thanks Sue.

  4. #4
    Hey, Mods--can you copy the appropriate parts of this to the Cure forum? Thx.

  5. #5
    Senior Member
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    Right. Thanks for writing all this jOE, also for writing it in this chronological order with your personal views included. I believe that the CRPA is important (any bill proposals for helping out for SCI are)... - Where in the system is this bill proposal now? Also, some has to advocate harder for it (I know many are, but still?), you know if I do a Google “News” search for CRPA it shows no match on any documents? As for “Web” searches I get some results, but the first one I get is “The California Rifle and Pistol Association CRPA is an organization of sportsmen dedicated to the preservation of the second amendment and the shooting…”, - could more have been done to make this better known? Not the rifle stuff I mean, but the stuff we are talking about. Your write-up here by the way makes it better known.

  6. #6
    Senior Member NetoAnAstro's Avatar
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    This is the kind of rally I want to participate in. All this information makes me believe that others are out there doing what I should be doing to help. Thank GOD for people like you.
    AstrO

  7. #7
    Quote Originally Posted by Leif
    Right. Thanks for writing all this jOE, also for writing it in this chronological order with your personal views included. I believe that the CRPA is important (any bill proposals for helping out for SCI are)... - Where in the system is this bill proposal now? Also, some has to advocate harder for it (I know many are, but still?), you know if I do a Google “News” search for CRPA it shows no match on any documents? As for “Web” searches I get some results, but the first one I get is “The California Rifle and Pistol Association CRPA is an organization of sportsmen dedicated to the preservation of the second amendment and the shooting…”, - could more have been done to make this better known? Not the rifle stuff I mean, but the stuff we are talking about. Your write-up here by the way makes it better known.
    Leif--try searching for "Christopher Reeve Paralysis Act" instead of the CRPA acronym.

  8. #8
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    Sounds amazing.......thanks for all you do Joe to lobby and work for a cure. I hope I get to attend next year. I found this site only in May so hopefully I will get to be involved soon.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  9. #9
    way to go, Joe! That's awesome. Hope to see you next year.
    Daniel

  10. #10
    Senior Member Leo's Avatar
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    Great write up Joe, thanks for all you do


    Leif the answer to this part is it's still stuck in committee.

    Where in the system is this bill proposal now?
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

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