Kidney Head

I think most of you know by now that I live in Tupelo, MS. Well last weekend it was an absolutely beautiful day and I decided to head downtown. It was just a random decision I made to get out of the house. I've lived here all my life but have rarely been downtown to get out for the day. They've also recently done a lot of improvements for crosswalks and curb cuts to make it a lot easier to get around in my wheelchair. The city is kind of out in front about improving the sidewalks recently and making the city much more accessible. Anyways, I just wanted to point out that I rarely am downtown. But there seemed to be a good reason for me to get out this day. I was rolling down the sidewalk when a young guy approached me with a sticker in his hand. It was a custom sticker that was red and white of a bear's face. But the left eye was covered with a shape of a kidney. He just told me he wanted me to have one and read the back of it that talked about a foundation he started. His mom just told me that they wanted me to have one and we went our separate ways.

So they walk off and I start reading the back of this sticker and I'm shocked. In case you can't read from the picture I will post what it says in quotations. Kidney Head- "Bryson Burks' father lost his battle with kidney disease after being diagnosed with the rare blood disease atypical Hemolytic Uremic Syndrome (aHUS). While in the clinic for his father's dialysis, Bryson learned kids were undergoing the same grueling treatments. Kidney Head is a foundation that helps the families of children on dialysis- making their everyday lives easier in order to focus on their unique health issues.

kidneyhead.org/donate

Isaiah 41:10

So I read this and thought about how terrible it would be to lose your father at a young age.  At the same time I thought how incredible it was for this young man to turn such a tragedy into a positive.  I thought to myself that I wish I would've talked or learned a little more about the situation before rolling away.  Then I got my opportunity.  We had went from downtown all the way to the new courthouse and started our way back to our vehicle.  Then I saw him and his mom coming out of a store.  We started talking again and I wanted to tell him that I thought it was incredible what he was doing.  His mom started to explain a lot more about the situation.  She said that everything had hit them suddenly when they found out the news and were not prepared.  She said Bryson would stay with his dad while he was going through dialysis which lasts several hours.  I believe she said that a certain group raised money to give Bryson an iPad to have something to do while he waited with his dad during dialysis. Like it states above, while he was there he noticed there were kids going through the same treatment as his dad.  So after his dad passed away, he decided to start this organization kidney head.

He said that his dad was a Grateful Dead fan and that inspired the name of the organization.  If you're not aware, Grateful Dead fans were also known as deadheads.  They were also linked to dancing bears with all kinds of different colors.  So that is the story behind the name Kidney Head and the bear with the kidney over the eye. So the goal of the organization is to raise money for children on dialysis.  They told me the money can go to anything that the child or their family may be needing at the time. Medical expenses can be so expensive and such a burden on a family especially when this happens unexpectedly. So I just wanted to write a blog to share their story and this organization.  It was very inspiring to me and I hope maybe that it helps spread the word.  There are still good people in this world.  There are also people suffering that we never see or know about.  So I hope this helps spread awareness and maybe somebody will be compelled to donate. I taped one of these stickers to the front door of Our Artworks to show support. So I'm glad Bryson gave me the sticker.  He also never asked for a donation, but just simply wanted me to have one. He just wants people to know the story.

One last thing to add to this story.  This is a great reason to get out and be a part of your community.  You never know who you're going to meet or what you might be missing out on.  You just might miss an opportunity to meet somebody very inspiring.  I hope you enjoyed this blog.  I know it made my day meeting somebody overcoming something tragic in their lives.  It inspires me to keep doing what I'm doing.

And make sure to check out the website kidneyhead.org

My YouTube channel

There are so many different ways to reach people in this advanced technological time.  This blog, for example, is one of the avenues I use to reach a lot of people and tell my story.  I'm not sure if most of you know this but I am really into new advancements in technology.  I love keeping up with every new technology coming out because a lot of it has features that make my life easier and more independent.  I quickly realized there were several great YouTube channels that are updated almost daily with new tech. A few that I subscribe to and love are Unbox Therapy, MKBHD, Austin Evans, Jonathan Morrison, and several others. These guys have been doing this for a long time and actually make YouTube videos for a living. They are able to get a hold of all of the new products when they come out. So it's a great way to keep up with new products and get a review to find out if they're good or not.

So, after watching all of these YouTube videos I realized there are not a lot of people discussing how people with disabilities can use this new technology to make their lives easier. All of these smart home products and so many other technology can be used by someone with significant disabilities like myself with a high level spinal cord injury. So I decided to start my own YouTube channel. The video I will post today is describing what exactly I want to do with the channel but I will also tell you. The first thing I realized is I needed to let people know who I am and the technology that I'm using today. One of my first videos I made shows me using my current environmental control unit. The reason I show it is because the actual person and company that installed the unit has now retired. So if any of my products stop working then I will have to purchase new ones. So I'll make videos as I go along of new products I'm either using or that are available that can benefit those of us with disabilities. 

I hope you check out my YouTube channel and there were a few other things I wanted to say about it. I just started the channel for several different reasons. I want to show people that it is possible to do about anything you set your mind to and technology can definitely help with that. I just hope that I can at least reach someone and help show them a way to make their life easier while living with a spinal cord injury. Also, I'm doing all the editing on my own. So I had to learn how to make the little intro on my own. I have my girlfriend or whoever that can help at the time actually record the videos with my iPhone for now. I don't have a professional microphone to record with so my audio may not be the best. So I'm hoping to improve every aspect of the videos over time. I also point that out to let people know to be patient with me and I'll put out videos as soon and much as possible. It really helps me out if you will subscribe to my channel and like my videos. I will try to write a blog post every time I post a new video with a description of the video in case I'm not able to explain everything in the actual video. So enough talking and check out the link below. We will see where this channel can go.

http://youtu.be/KFGl-uza0wM

2016 Charity Bowl presentation at Sigma Nu

My last blog post I talked about finding out that I was the recipient for the 2016 Charity Bowl by Sigma Nu.  So I wanted to talk a little bit about the game and show some pictures from the presentation. JD Maloney was my contact from Sigma Nu during the process and he did an amazing job. The event was planned for Thursday, March 31, 2006 and was supposed to start about 4 PM. There was supposed to be a cheerleading contest before the game started between several of the sororities from Ole Miss. Then the game would start about 6 PM and they would do the presentation during halftime. Well, the week of the game all the weather reports indicated there would be severe weather Wednesday and Thursday. It was supposed to rain all night Wednesday and all during the day on Thursday. So this would leave the field completely wet and would be a problem for me getting around in my chair. So I had a conversation with JD and we decided to move the presentation to the Sigma Nu house on Friday at 6 PM. So I told everyone that was planning to come to the event to wait until Friday because of the chance of inclement weather. I told JD that I would make it to the game and if the weather was bad I would just return home to Tupelo.

So Wednesday night while I was in the bed thinking about the game it was coming a bad storm outside. I wake up Thursday and we did not have bad weather all during the day here. Me and my mom left the house about 4:30 PM and headed towards Oxford. The sun was out for most of the drive over there but it was a little overcast. We make it to the Oxford Lafayette Sportsplex and you could tell it had rained the previous day but the field was okay. I had to navigate around and find the driest spot but I was able to make it onto the field. I had enough time to eat something at the concession stand and then make it onto the field as soon as the game was beginning. I didn't realize how serious the game would really be until it started. On one side of the field you had the Sigma Nu football team and members of the fraternity. The other side of the field were members from the Kappa Alpha football team and members of that fraternity. There were also emcees for the game and they were members of Sigma Nu. They did a very good job of showing appreciation to the members of Kappa Alpha ha ha. They talked a little bit of smack but it was entertaining and fun.

So the game started and both teams were in full uniform with helmets and pads. They brought out the athletes and former high school football players for each team. There were some serious hits during the game. They had a full referee crew from the NFL. So the refs kept the game from getting out of hand. The effort from Sigma Nu was amazing. I'm a huge football fan so it was nice to get to see a game in the middle of the spring. During halftime I was presented with a jersey that the Sigma Nu team wore with the number 16 to represent 2016. It was absolutely amazing and everybody cheered really loudly. I even gave a little halftime speech to the Sigma Nu team for extra motivation for the second half. They came up short during the game but they never stopped playing their hearts out. They almost came back to when at the end after being down by several points at the beginning. But I think that was almost a life lesson within itself. It doesn't matter if you're down as long as you keep fighting and you never give up. Sometimes life hands you those type situations to learn from.

So after the game was over I had a chance to meet a few players that play football for Ole Miss. I was glad they came out to show support for a great cause. They are in the picture directly below. As soon as the game was over it started lightning and the rain was coming our way. So fortunately we were able to stay for the entire game and everything worked out perfectly. But we still had already planned to do the presentation the next night at the fraternity house. If we had known we could have had the entire event in one day. But you can never predict what the weather is going to do. And I really enjoyed how everything turned out.

 OL from Ole Miss 70 Jordan Sims 55 Tyler Putman 50 Sean Rawlings

So Friday my parents, girlfriend, PCA, and myself headed to Oxford to the Sigma Nu fraternity house for the official Charity Bowl presentation. They invited us to eat at 5 PM and we had the presentation at 6 PM. It was parents day at the fraternity. So it was really nice because I got to meet several of the parents of all the guys from the fraternity. There were so many nice people that I got a chance to speak with. So in a way I was happy that they moved the presentation and I got the opportunity to check out the fraternity house. My brother also made the trip with his wife and a couple of his friends that were former members of Sigma Nu. So we got to eat with everybody. As soon as we finished eating we went outside by the pool and had the presentation. Kimmy, my girlfriend, made sure to get a video of the presentation so I could show everyone that was unable to make it. It was so surreal and I couldn't believe it was happening. I've always done everything in a volunteer capacity. I've never wanted any money for doing what I do. It was kind of the same feeling about my old job. It is a calling. Not everyone can do it. But volunteering and having a passion to grow Our Artworks into something amazing has never been about money. So I have to thank William Heard for nominating me for this award. Putting your heart into something really does eventually pay off.

So underneath this paragraph I added the video from the presentation at the Sigma Nu house. Brent Ferguson is the one that is talking about me and presents me with the check. He was one of the philanthropy chairmen and did an amazing job. Morgan Parmer was another chairman that I didn't mention that also worked very hard on this. So I want to give a shout out to those guys for doing such a great job of making this an amazing experience for me. JD is the one in the video standing behind Brent with the suit on. I would also like to thank the entire Sigma Nu fraternity. I was never in a fraternity but I realized after Friday that if I could go back I would try my best to be a Sigma Nu. I felt like an honorary member. So if you didn't get a chance to make it to the presentation I hope you will take the time to check out the video and pictures below. I made sure to get a few pictures inside the house so everybody could check them out. Hope you enjoy.

Eli Manning's Sigma Nu class picture

2016 Charity Bowl by Sigma Nu fraternity

I am very honored and humbled to be the recipient of the Charity Bowl for 2016.  I just noticed a tweet from the new Chancellor of the University of Mississippi with a link to my blog, and it also recognized me as the recipient for this honor to represent Chucky Mullins.  It is absolutely surreal and still a shock to me.  I realized I haven't written a blog post in quite a while and thought that I should at least share a few of the articles written about me recently.  It is a good way to also catch up on what I've been up to lately.

One of my goals is to join the MFPA.  That is the mouth and foot painters Association, which is a worldwide organization for artists that are only able to paint with their mouth or feet.  I currently volunteer most of my time at Our Artworks, which is a nonprofit organization that has a weekly art class for people with disabilities.  I'm also a board member at the life office in Tupelo.  Life is an acronym that stands for living independent for everyone.  It is a nonprofit organization that helps people with disabilities to return to their home with as much independence as possible.  Life will build ramps to make your home accessible.  We help people transition from nursing homes back to a home that is accessible if that person can live alone.  We offer several services. We also refer people to other departments that can provide services that we are not able to provide.  So we figure out a way to get people the help they need.

Chucky Mullins was an important person in my life even before my injury.  After my injury, he became an even bigger inspiration.  I was hurt May 14, 2008 and arrived home August 1, 2008.  The following spring I decided I would attend the Chucky Mullins courage award banquet every year.  I love Ole Miss football and Chucky Mullins is a very important figure  associated with the football team.  I thought it was amazing they still recognize him and his number is back on the field.  So I haven't missed a banquet since my injury.  I also purchased season tickets in August 2008 after returning home from my injury.  I have made every home game since that time except for a couple that I was either sick or the weather was too miserable for me to attend without getting sick.  I love Ole Miss with a deep passion.  I graduated from the University in 2006 with my criminal justice degree and decided to stick around to work at Oxford Police Department.  I moved from Oxford back to Tupelo after I got out of the hospital.  So I'm not in Oxford as much as I would like, but I love every chance I get to make it back.

I'll always remember a statement that the first recipient of the Chucky Mullins courage award and football player to wear his number made.  He said I wonder if Chucky would think they picked the right guy.  So I hope that Chucky would think I was deserving of this award.  I've had the opportunity to meet Brad Gaines and the Phillips family that adopted Chucky.  They are all incredible people.  I always say one of the blessings of my injury is the people that have been placed into my life.  I've been very fortunate to meet so many amazing people after my accident that I never would have otherwise.   I always tell people that I'm just lucky that I'm alive and feel very fortunate.  I have a great support system around me with my parents first.  My brother was by my side almost the entire time I was in the hospital.  I've been blessed with great friends that I've met that are also paralyzed.  So I'm very blessed and honored that I was even considered for this.  I am confident that you would have trouble finding too many other people that love Ole Miss the way that I do.  So I know they got that right with this selection.  I just wanted to write a little something for everyone that is checking out my page right now.  It's obvious I will have to update everyone and do a better job of keeping this blog up-to-date.  So I hope you enjoy some of my articles I've written.  I will leave a couple of links below of recent articles written about me receiving this honor.  I'll also leave a link below to an article that I wrote about Chucky Mullins several years ago.  Thanks for checking this out.

http://kevinonwheels.blogspot.com/2011/04/chucky-mullins-true-hero.html

http://www.wtva.com/news/local/Charity_created_in_honor_of_Chucky_Mullins_awards_former_officer.html

http://hottytoddy.com/2016/03/27/sigma-nu-charity-bowl-to-assist-former-oxford-police-officer-2/

New mobility Magazine

There are several great websites for people with disabilities to enjoy and find out information about specific questions you might have. There is a magazine that I came across a while back. The name of the magazine is new mobility. But they also have a website www.newmobility.com

I really want everybody to check it out. And whenever you go to the website, make sure to check out the blog icon and click on spin 2.0 . Luckily I was able to find this amazing person, through the Internet that writes this blog. Her name is Tiffiny Carlson. She seems to always write about something that is exactly what I'm thinking about. I copied and pasted a sample of one of her recent blogs. I'm sure if you're in a wheelchair, then you will know exactly what I mean, after reading this entry. So please take the time to read through this then go check out the website.



Spin 2.0
Lean on me? Put your foot on me? No way
Jun 19 10:12
A disgruntled woman wrote me the other day about one of the biggest pet peeves I think most people have when living the wheelchair life.

People who have no qualms about using our wheelchairs as an end to a means for something they need to get accomplished. Have no idea what I'm talking about? Let me explain.

The woman who wrote me told me that last week, while waiting for the elevator with a coworker, this coworker suddenly propped his foot up on her wheelchair and tied his shoe. I don't know about you, but if you use a wheelchair, this is about equal to someone putting their foot on your thigh. Highly offensive barely covers it.

But not everybody gets this apparently, as the jerk at her work so rudely exemplified. For people who have no experience being around someone in a wheelchair (and make no mistake there are a lot of people in this boat; if I had to put a number on it, probably 90% of the populace have never had direct contact with someone in a wheelchair), they don't even think about the people in the wheelchairs.

Our wheelchair is an extension of our personal space. It can't be avoided no matter how you feel about being in a wheelchair. They say our personal space is about 1½ feet (in the U.S that is. It's vastly different in other countries and is usually not as spacious). I can't tell you how many times I've been at a movie theater where the person behind me has propped their foot up and put it on my back rest. Every time this happens I immediately turn around and look at them with the evil eye. They usually get the point and put their foot down right away.

And don't even get me started on people who just lean on my wheelchair or use it as some kind of support. We are the temporary cane for old ladies. The woman who wrote me said it perfectly, "Like come on, would you grab a walking person's shoulder for stability. I doubt it! It's a matter of respecting people."

It can be hard dealing with this when it happens though. When it does, always make sure you say something the instant you notice it. Never feel like you should hesitate when someone is invading your personal space. You don't have to necessarily yell at them or be a complete b#$!% about it, but you can at least ask them to “Please remove whichever body part is touching your wheelchair.”

I'll sometimes say this in a curt manner, other times….I'll say it very sweetly with a big smile. Honestly, it all depends on how old the person is. It's really hard to yell an old lady when she's about to fall over and grabs onto your push handle to stop herself (yes this has happened).

Most of the time people will apologize after I've said something about it. "Oh hey she can talk?!” Maybe it makes them finally see the person and not the wheelchair. I think that this is really key in finally changing people's perceptions of people who use wheelchairs - just talk to them.

I think every human should make it their personal goal to know someone in a wheelchair at least once in their life. There are so many important social mores that you only learn if you hang out with us. Maybe you don't care, and that's fine, but don't get mad at me when you embarrass yourself when someone in a wheelchair gives you a tongue lashing (much worse than my own) when you're out on an important date.

Our wheelchairs are our personal spaces. They are, they are, and don't you forget about it.

How do you feel about others touching your wheelchair? How do you handle it?

Vote for Ronnie!

I know that most people have a very busy life but please take the time to read the article to the first link. It shows you just a little bit of Ronnie Jernigan's day at work. He works at the L.i.f.e office here in Tupelo. Life is a non-profit organization that stands for living independent for every one. The organization helps to build ramps and provide other needed equipment for the blind/paralyzed/other individuals that need help in the local area. I just saw Ronnie the other day at the life office and he never mentioned anything about any of this. If you click the second link you can vote to help him win a modified minivan that would make life much easier. He has been paralyzed for a very long time and has helped a lot of people. I have never seen him without a smile on his face. And he always has encouraging words whenever you see him. The second link also has a share button. Before you vote you can share the page to your Facebook or twitter. There are several other ways to share the page. Also enter in the promo code 990 to add an additional five votes. You can only use the code once but you can vote once every day until the Sunday. I normally don't ask for anybody to vote for anything like this unless it is important. So please vote and spread the word. Let's try to help him win!

An independent living hero

Ronnie Jernigan | Mobility Awareness Month - Vote For Me!

Brotherly love

Sometimes you come across something on TV that truly captivates you. The kind of thing that actually makes you appreciate good reporting. I saw this on ESPN E: 60 which have a lot of inspiring athletic stories. I saw a small clip, and it showed a young boy doing drills for peewee football. He looked perfectly normal, and it made me wonder what exactly the story had to be about. This kid ended up being absolutely amazing. I don't want to describe everything about the video, because I would like for you to experience it for yourself. Please take the time to watch this. I'll give my thoughts in the following paragraphs.



I do have to admit that I watched this video several times. I'm also man enough to admit that it brought me to tears. I don't mean that in a bad way at all. It's so overwhelming that this eight-year-old kid could be so unselfish. It seems to be rare to find anyone like this anymore. I've also learned since I've been paralyzed that there are several other causes of paralysis. As they said in the video, the younger brother had cerebral palsy. So I looked up the information to learn more about it myself.

So I typed in cerebral palsy on Google. I found the website, US national Library of medicine-the world's largest medical library with information about cerebral palsy under diseases and conditions. This is exactly what it said.
"Cerebral palsy is a group of disorders that can involve brain and nervous system functions such as movement, learning, hearing, seeing, and thinking. There are several different types of cerebral palsy, including spastic, dyskinetic, ataxic, hypotonic, and mixed. Cerebral palsy is caused by injuries or abnormalities of the brain. Most of these problems occur as the baby grows in the womb, but they can happen at any time during the first two years of life, while the baby's brain is still developing. In some people with cerebral palsy, parts of the brain are injured due to low levels of oxygen in the area. It is not known why this occurs. Premature infants have a slightly higher risk of developing cerebral palsy. Cerebral palsy may also occur during early infancy as a result of several conditions, including:
• bleeding in the brain
• brain infections (encephalitis, meningitis, herpes simplex infections)
• head injury
• infections in the mother during pregnancy (rubella)
• severe jaundice
In some cases the cause of cerebral palsy is never determined." http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001734/

It's amazing how much we can learn from younger children. There are a lot of lessons we can learn from this video. No matter what your situation in life is you can overcome it. I mean, the older brother Connor was very unselfish and understanding. He loved his brother no matter what. One of my favorite moments from the entire video was when he refused to race without his brother. He also didn't care about what place he finished as long as he finished with his brother. You could also tell how happy the parents were that their sons were so close. The most important thing for the mom was for her child to be accepted and respected. This is something we should all think about the next time we see a family with a special needs child. We should all try to treat every person the same as anyone else.

I hope that you enjoyed this video. This is exactly the goal that I've had for this blog. I love to share stories that inspire people. I would love to hear your reactions and how this video made you feel. It's always great to see positive experiences in the media. I get really tired of hearing so much negative news all the time. So please leave a comment below!