<iframe src="//www.googletagmanager.com/ns.html?id=GTM-P3V3WD" height="0" width="0" style="display:none;visibility:hidden">

Incontinence Support Blog

Medical Journaling – Part 1

Posted by Phoebe Ezell

Sep 15, 2016 2:19:28 PM

Recently a good friend of Men’s Liberty was in the hospital with a life-threatening infection.  As with most hospital visits, it was extremely stressful on his caregiver…  Me.

While he underwent emergency surgery and recovery, I realized – it was left up to me to be his health advocate.  I found myself talking with all the doctors and nurses assigned to him, trying to take notes on what was happening every day; the daily doctor’s instructions, if they changed; what all the machinery was that was connected to him, and what was being poured into his body.

The one additional element I didn’t record was how he was feeling.  And that was only because he couldn’t verbally communicate with a vent tube down his throat!  It was the quietest he has ever been in his lifetime!

For the most part I have all my notes on one notepad, but I also have them jotted on paper napkins, the back of grocery receipts and whatever other loose pieces of paper I would dig from my bag to take notes.

Keeping these notes allowed me to clearly share the majority of each day’s events with all of our family and friends.  Those notes also now act as a mnemonic device for me as I share with him the sequence of events that he was clueless to, as he was in an induced coma.

I became his memory of that time period.  I had often witnessed my father saying that about my mother as they negotiated the V.A. medical system.  She is his memory.  Now I had a lot better understanding.

With today’s healthcare systems so very complicated, I now wonder how people navigate them alone.  And as it keeps getting more and more specialized and intricate, the need for a “memory keeper” is key.

These are my steps for being proactive with your own medical care and keeping a medical journal:

First, start with a notebook or notepad.  Nothing fancy, but simple to utilize, by keeping your notes in one place.  Making it a really bright color makes easier for you or your caregiver to find it in an emergency.  Your medical records and notes should be the only thing you put in this notebook.

There is no right or wrong way in organizing your notebook.  It is all about creating a system that works for you.  You should be able to access the information that is important to you.

Remember that I said I took notes on receipts, napkins, etc.  Instead of transcribing them, I simply taped them into my journal.  In other words – NO RULES.

In addition, if you are incapacitated, the journal allows others to have access to what you are currently experiencing and monitoring with your health.

So that brings us to “What to put in your notebook.”

  • Record your pharmacist. They have an electronic record of all the prescriptions you fill with them. If you have more than one, make a note of their phone numbers and addresses too.
  • Record any information related to all of your doctors. Include their phone numbers and addresses. Make it easy for someone else to know who you are dealing with.

  • Record some of your basic health information as well. Start with simple statistics like your DOB (Date of Birth), weight and height, blood type and your typical blood pressure, if you know it.
  • Record any medications you take on a regular basis. Remember to record if you have any reactions to your medication. When recorded, it’s also easier to remember to discuss it with your doctor on your next visit.
  • Record prior illnesses, surgeries and injuries. These events may play an important role in your long-term health. It’s very easy to forget major medical events when you are directly asked by a doctor. Talk about a brain freeze, or even a “Senior Moment.” OMG - I forgot that I had a car crash that I had with a semi-truck in my youth. That accident may have affected my neck and spinal pain later as an adult. And who forgets getting run over by a semi-truck?!

I use to have migraines and then started a “headache journal.”  I used a simple date book.  I could record the date it happened, the type and level of pain (from 0 to 10), where it was in my head, how long it lasted, and anything else that was happening in my body (nausea, etc.).

I also looked at my life and what was happening in it.  Things like what I was eating and how I was feeling that day.  Eventually, I saw a pattern and could address the source, not just the pain.

Hopefully, this gives you some ideas to begin your own personal medical journal.  And perhaps it will spur some discussions with your spouse, family members and friends.  They need to know you’re being proactive with your health – and by telling them, they’ll know where to look to find your journal in the event of an unfortunate tragedy.

Begin taking the steps to create your medical journal now!!  In a while, I’ll share some more tips related to this subject!

We also want to acknowledge that this month is National Spinal Cord Awareness Month. Men's Liberty has some wonderful blogs on Spinal Cord Injuries, including blog postings from Caleb, so look around and read these wonderful posts!

Topics: spinal cord injury, Health Literacy, Guest Blogs

Tales from the aisle seat...

Posted by Caleb Bartlett

Feb 24, 2016 10:36:00 AM

Traveling by plane is getting more and more stressful. From security checkpoints pat-downs and shoe removals to TSA officials who view mother’s breast milk as potentially toxic substance, there are a gazillion mundane things that can really get things off to a bad start. Long lines, lost luggage, inattentive attendants, flight delays, long layovers, and more can have you spending more time just getting to and from your destination than the actual vacation. If you’re traveling on business it can wear you down, inhibit your performance, cost money, and even affect your health. This applies to all of us, but what about the added difficulty for those of us in chairs?

I could write six months’ worth of blogs on the ins and outs of dealing with airlines from a chair, but for now I will offer a series of suggestions for dealing with the airlines that will help make the fast-approaching vacation season a bit easier to navigate if you plan on getting out of town. So here we go…

    1. Never Book Your Tickets Online- Do your research and book by phone. Find out which airlines have the best customer service reputation for assisting people in chairs, and supply the most direct flights. Speak directly to an agent and ask lots of question. Airlines process thousands of calls a day, be specific and give them all the info you can. Remember to ask that they waive the phone booking fee because you called with specific needs.
    2. Try to Book Direct- Nobody in chairs likes awkward transfers and if you have any layovers or plane changes you increase you travel complications and even chance for injury. If you cannot transfer unassisted do not travel alone. Airline employees are not wheelchair-savvy, and are often rushed and trying to get the plane filled, packed, and on its way on time.
    3. Do Their Thinking for Them- Never assume airline or security staff know anything. From the moment you book your tickets, to claim your baggage, make it clear what your needs are. If you need an aisle seat with an adjacent seat, tell them and tell them why. Always clarify that you need pre-boarding time before the other passengers. If you use a manual chair tell the attendant at the door of the aircraft to store it in the forward compartment and do not stack anything on it.
    4. Take Your Time- Arrive at the airport as early as you need to in order to check your bags and get through security so that you can be at the gate 90 minutes before boarding. If you use a catheter try to void before boarding. Rushing creates a recipe for disaster.
    5. Know Your Gear- Travel as streamlined as possible. Keep an emergency kit of all your medical essentials in your carry-on. Keep wheelchair add-ons like cushions and backpacks with you in the cabin. Pack smart.
    6. Don’t Be a Jerk- You catch more flies with honey. Don’t hold people responsible for what they don’t know. Be kind, grateful, and take time to teach and it is amazing what people will do. Service industry staff are used to being yelled at and walked on. They’re more afraid of you than you are of them. Help them help you and you’ll pave the way for another person in a chair to have a better, safer trip next time.

Happy traveling!

Topics: spinal cord injury, Spinal Cord Injury with Caleb, travelling with incontinence

Too Little...Too Late With Caleb

Posted by Caleb Bartlett

Apr 27, 2015 3:37:00 PM

 Every few months I get a message here on the blog. Ironically, it usually comes from a mother. A mother whose child has recently suffered a spinal cord injury and they are looking for answers. Answers I do not always have. Answers I wish were simple and are not. Many want to know if stem cells work, others want my advice on whether or not they should get stem cells. Some are just fumbling in the dark looking for some sort of direction now that the doctors and therapists have sent their baby home. It can be a tough and heartbreaking conversation.

I have noticed a recurring theme in all of these exchanges and it baffles me. It is the sheer lack of preparedness and practical, useful real world how-to information they are sent home with by the medical establishment. They simply have no clue and judging by the information they are given the doctors and nurses have no clue either. It's a crime when you really think it over.

In five days it will be twenty-one years since my accident. I am in astoundingly good health and due largely to the fact that we noticed very early on that with a little common sense and forethought many potentially dangerous situations could be avoided. The truly interesting fact is that 80% of the time doing the exact opposite of what the nurses did or suggested was the safest route. While I am very thankful to be healthy that little bit of info I just shared does not paint a very reassuring picture of the medical profession or its understanding of living post-injury over the long term.

I'll give an example of what I am talking about. One of the major problems to watch out for post-injury health is skin breakdown due to sitting or lying in a particular position for a long time. However, many other skin issues can arise from dry skin, heat rashes, insect bites, burns, soap residue and so on. It is vital that the skin be kept perfectly clean and dry. So in order to maintain proper skin health someone like me must constantly shift their weight, reposition in bed, stay clean and stay dry.

Now here's the mix up. Nurses are taught to prevent skin breakdown by keeping the skin soft and moist by covering their patients with copious amounts of lotion. A technique most commonly used and developed for the elderly. It does not apply across the board and it simply does not work with spinal cord injury. What happens is that more often than not lotion is not given time to dry, especially in areas that don't often see the light of day. Instead of that morning dew glow like Beyoncé you get whole areas that never get totally dry. Warm, dark and damp equals a breeding ground for stuff I don't want to discuss. Not only that, but most moisturizing products use mineral oil and not essential oils. The cellular walls of our skin does not absorb mineral oil, but what's worse is that mineral oil keeps water and oxygen, the two things your skin needs most, from moving both in and out of the cell membrane. It's like spreadable cellophane wrap. So why do the nurses use it? Even more, why do they tell us to use it? 

I could provide example after example. Each more disturbing than the other and sadly the cause of great physical and emotional suffering, and even loss of life. Sometimes I think we need a cure for spinal cord injury more to be protected from outdated, careless medical practices than the injury itself. The entire system needs a dramatic overhaul before it's too little and too late.

If you are reading this and you or someone you love has a new injury, get online, do more research. Study the products and medications you are using. Talk to those of us with older injuries. Don't be afraid. If you are a nurse or a doctor, listen... LISTEN... think things through. Observe. We don't need any more parrots spouting what they've been taught. We need healthy, bold innovators. Network and find practical, useable resources for your patients. If you are one of these medical professionals who got into this because of job security then God help you and I hope you sleep at night. Yeah, I just said that.I realize this month's post is short, but hopefully it is to the point and made you think.

Thanks for reading.

Get Help Now!

Topics: spinal cord injury, Spinal Cord Injury with Caleb

That Darn Easter Bunny...

Posted by Caleb Bartlett

Mar 26, 2015 11:00:00 AM

It's now the second day of spring. It snowed yesterday on the first day of spring. It doesn't feel like spring and these Meteorologists on TV might as well be telling us the Easter Bunny is running behind on chocolate orders and had to outsource holiday deliveries to Godiva. Fortunately the snow is melting very fast.

I'll tell you something else that is melting very fast, the weight around my middle. At least I hope so.

Because my injury is at a high level the muscles below my chest are mostly paralyzed. When a muscle is unable to move it becomes atrophied. The muscles that wrap around the abdomen are the support system for the core of the body. When you sit up, your core pulls you up. When you stay seated it holds you up. When you walk it stabilizes the entire torso. They work without even thinking about it. Their other job is to hold the stomach, intestines and other lower organs in place, tucked up under the diaphragm. When those muscles atrophy the organs slide forward and down causing a condition known as "Quad Belly". It gives the appearance of a beer belly. When any extra fat builds up on the body it tends to build up in and around that area. Also, the forward shift and lack of consistent muscle contraction can cause the metabolism to slow down considerably so once weight is gained it can be difficult to burn off.

It seems that somewhere between the holiday stuffing and gravy, the winter comfort food and the reduced trips to the gym due to below freezing temps and piles snow I started to resemble Boss Hogg on a frat boy Pub Crawl. If you're too young to catch the Dukes of Hazzard reference I simply... well... got fat. This is not good. Fat building up around the inner organs puts me and other spinal cord injury survivors at risk for early on-set heart disease and diabetes. So with summer approaching and my deep-seated need to look sexy in a leopard print thong (but mostly to just be healthy) I got my butt in gear. However, not after a fit of remorse and self-loathing that fed my other deep-seated need to wallow in the kind of selfish vanity only another Virgo like myself could truly comprehend.

I truly love food. All kinds of food. Every ethnicity, type and shape. Baked, fried, roasted, grilled, fermented, chilled, salted, smoked, boiled or raw. Meat, dairy, veggies, pasta, fruit, bread, desserts... my god... I love the culture around food, discovering a great new restaurant or recipe, learning how something made, sharing food with friends, growing and preparing food. In truth, I don't eat bad fatty food, processed foods, fast food or even candy! I just love high-quality, good food. What is it that song by Sting says, "If you love someone set them free..."

So chia seed smoothies and the gym, the continued electrical stimulation bike, smaller portions and a few other techniques have me exercising self-control and little by little seeing results. So screw you Easter Bunny and your tempting chocolate demons! Ironically, rabbits are vegetarians.

My goal is to lose twenty-five pounds... and keep it off. So often people with Spinal Cord Injury live a lifestyle and adopt habits to ease the daily emotional pain and frustration. Whether it be subconscious or not it is often covered by drugs, alcohol or anti-depressants. The need for the comfortable and familiar can run very deep and strong. Certain foods and activities can act as a drug as well. Personally, I believe this condition is a result of the feeling of hopelessness fostered by a long-held belief by the medical profession that there is no cure. These unhealthy life choices cloud the vision of the future and continue to hold many in a permanent winter of despair. We have to look beyond the common held belief and start believing in ourselves. We have to make positive, healthy life choices so we can live and be ready when the solution we've been allowing ourselves to hope for comes.

Spring always brings new life, and while your parents may have told you a libidinous bunny who lays colored eggs delivered all that candy to you... this spring I hope if you are reading this and need to let go of something to stay healthy, you will allow yourself to hope and believe the real truth that a cure is coming, and the next doctor who says, "there's no hope"... well... even your parents told you the Easter Bunny was real.

Thanks for reading.

Get Help Now!

Check out these other popular blogs from Caleb!

http://blog.mensliberty.com/blog/bid/300024/Understanding-Spinal-Cord-Injury-Part-1

http://blog.mensliberty.com/blog/bid/306223/Understanding-Spinal-Cord-Injury-with-Caleb-Part-2

http://blog.mensliberty.com/blog/bid/311261/Understanding-Spinal-Cord-Injury-Part-3-with-Caleb

Topics: wheelchair, spinal cord injury, Spinal Cord Injury with Caleb, holidays, Guest Blogs

5 Ways Adaptive Sports Changes Lives with Men's Liberty

Posted by Mens Liberty

Jul 5, 2014 2:15:00 PM

Men’s Liberty has been privileged to be a Mission: ABLE partner and supporter of the National Veterans Wheelchair Games which are taking place in Tampa in July 2013. We’ve learned SO much from these inspiring athletes. And every time I talk to the competitors they give me new reasons to believe in the resilience of the human spirit. They speak with passion and conviction about the impact that adaptive sports have had in their life. Whether you’re an old hat or still a bit green, we’ve heard your stories and wanted to share the top 5 ways you say that adaptive sports have changed your lives. Have additional ways – let us know in the comments!

The stories below are from a variety of individuals, including veterans and civilians with spinal cord, traumatic brain and other injuries.

#1 – "Today, I am only on three different medications (down from 15) because of skiing. I have had the same coaches for the last three years and they have seen fast and unbelievable changes in me with my TBI."

Spc. Joel Hunt is an army veteran with a Traumatic Brain Injury who competes as an Alpine Skier. 

"When I came home I spent one year in a wheelchair feeling helpless. I was always the man that provided for my soldiers. And now I had to swallow my pride and ask for help. When my parents came to take care of me they constantly motivated me by getting me out of the house. I was lucky because a lot of soldiers do not have that support system. I am from Kokomo, a small town in Indiana and I had never skied before in my life. What I didn't realize is that skiing would change my life. In February 2008, I started getting out of my wheelchair because of my dizziness and my blackouts due to overheating. Plus, I didn't have enough control in my legs due to numbness and I was on 15 different kinds of medications. At times, my speech was slurred and my thinking was so slow that people thought I was drunk.


Since I had PTSD and TBI, I never wanted to get out of the house. My parents forced me to go to BOEC TBI ski camp to give it a try. On December 17, 2008, I learned how to ski and was told that I was carving on the third day. I was then introduced to NSCD to learn to race camp which I did well on rec skis. My best friend told me to check out CAF Operation Rebound and because of them and Disabled Sports USA's (DS / USA) efforts, I was able to compete that next year."

How adaptive sports changed your life: "Today, I am only on three different medications (down from 15) because of skiing. I have had the same coaches for the last three years and they have seen fast and unbelievable changes in me with my TBI."

For more information on Joel, visit: http://www.va.gov/adaptivesports/va_groups_story-JoelHunt.asp

#2 – “Playing sports, along with everyone's support, played a key role in my physical recovery as well as my psychological recovery.”

Carlos Leon is a quadriplegic and former marine who competes in the Discus. He’s only 2.62m from breaking the world record!

Training Regimen: "I pretty much live at the gym because I want to be the best in the world at the discus throw."

How did you get involved in adaptive sports: "My parents are Colombian so playing soccer at an early age is a tradition in my family. I've been an athlete my entire life. In June 2005, I had recently returned from deployment in Iraq and was six months from relief of active duty. While stationed in Hawaii's Kane'ohe Bay, I went swimming with some friends. I dove in the water, hit some coral rock and broke my neck at the fifth cervical vertebrae. Five months later, I attended my first sports camp."


How adaptive sports changed your life:
"My family, friends and the Corps were behind me 100%. Playing sports, along with everyone's support, played a key role in my physical recovery as well as my psychological recovery. Six years have passed since my accident where I lost function of my limbs. Now, I can walk with the assistance of a cane or walker. My discus throw, which is now my sole focus, has gone from eight meters on my first throw five years ago to nearly 24 meters. I am only 2.62 meters off the world record."

For more information on Joel, visit: http://www.va.gov/adaptivesports/va_groups_story-CarlosLeon.asp

#3 – “Growing up, I didn't know any injured people. The only injured people we see are the people at traffic stops asking for change. Paralympic sports opened my mind to a different world. I learned that I had options."

Kari Miller is an Army veteran and double amputee. She competes in women’s sitting volleyball and won a silver medal at the 2008 Paralympic Games in Beijing, China and named best libero at the 2009 Euro Cup.

How did you get involved in adaptive sports: "In December 1999, I was on leave of duty to visit my family for Christmas. While driving, my car was struck by a drunk driver and as a result, I lost both of my legs. In the weeks following the accident, I had plenty of bad days but my physical and emotional rehabilitation came through athletic competition."


How adaptive sports changed your life:
"Through sport competition, my work with the USOC Paralympic Military Program and support from my family, I realized my full potential as an athlete with a disability. Growing up, I didn't know any injured people. The only injured people we see are the people at traffic stops asking for change. Paralympic sports opened my mind to a different world. I learned that I had options."

Kari participates in sports for: Rehabilitation, competition and teaching other disabled Veterans about sports.

Fun fact: Kari is a rock climber and comic book enthusiast.

http://www.va.gov/adaptivesports/va_groups_story-KariMiller.asp

#4 – Going from instructor to student gave me a new appreciation of how “hard it is for our students to do what we ask them to do; and how dedicated and competent our instructors are.”

For many years, I taught skiing and snowboarding at the Adaptive Sports Foundation as a volunteer instructor. I skied or snowboarded everywhere on Windham Mountain with ease. I gave the first snowboard lesson to many of our students on the racing team.


Life changed for me a few years ago when I developed a neurological condition that cost me the use of my legs. In 2008, I could no longer snowboard or ski. In fact, I could barely walk.

So, I became an indoor volunteer, doing what I could to remain active in the program and stay in contact with friends, fellow volunteers, and students. My fellow instructors and students, especially Michael Mistretta, Kevin Cohane, John Swartwood and Mary Bozzone, gave me wonderful advice on how to cope with my new disability, which made life a lot easier. I learned how to use crutches and a wheelchair, which was something I never thought I would have to deal with on a personal level.

Last winter, I took the plunge and tried mono-skiing. With assistance and encouragement from Adam DeMuth, my daughter Dani, and many other instructors, I was finally able to get back on the snow. The experience was exciting and enlightening! Being on the other side, a student and not instructor, brought home two things I never understood before: first, how hard it is for our students to do what we ask them to do; and second, how dedicated and competent our instructors are.


I wish I could say I was an instant superstar, but the fact is, I did a lot of falling, and Adam and Dani did a lot of picking up. I knew what I was supposed to do, but I wasn’t always able to do it. And, it is amazing how steep White Way, a Windham Mountain beginner trail, looks when you are going down in a mono-ski and not upright on a snowboard. After a few days and many runs, I was able to master Willpower, another Windham Mountain beginner trail, and get up and down White Way with ease.

My instructors displayed infinite patience, not only teaching me how to ski, but encouraging me after each frustrating fall. This year my goal is to improve enough so that I can return to teaching. If I can accomplish that, I know I will be better than I ever was before, because now I have seen life from the other side.

For more information on the Adaptive Sports Foundation, visit: http://blog.adaptivesportsfoundation.org/2011/03/volunteer-gains-first-hand-insight-as-role-changes-from-instructor-to-participant/

#5 –  “When you’ve had a traumatic injury it affects your social life, self-confidence and self-worth. Our job is to say ‘your life has changed but it hasn’t gone up in smoke’.”

Tom Brown, who was a rehabilitation therapist at McGuire VA hospital and director of the first National Veterans Wheelchair Games, knows firsthand the therapeutic value of adaptive sports. Born without legs— “I have been basically between artificial legs and wheelchairs all my life”—at age 7 he was the youngest member of an all-men’s wheelchair basketball team.
 
While majoring in music at the University of Illinois, Brown enthusiastically participated in UI’s wheelchair sports program—one of the few in the country at the time. In the end, love of sports prevailed; he pursued his master’s in therapeutic rehabilitation (TR).


“The goal of TR is to get people with disabilities out into the community,” Brown, Paralyzed Veterans’ director for the 32nd Games, explains. “When you’ve had a traumatic injury it affects your social life, self-confidence and self-worth. So we work on whole body, mind and soul. All of these [injured] were military vets, parts of teams—now suddenly they are on their own, they can’t be part of something. Our job is to say ‘your life has changed but it hasn’t gone up in smoke.’ ”

Dr Ken Lee, head of spinal cord medicine at VA Medical Center in Milwaukee, and himself a combat veteran and former patient (he received a traumatic brain injury from a suicide car bombing) seconds Brown’s view. “We’ve been pushed to do some sports since childhood,” he says. “It makes sense that when we have an injury or life-altering medical event, we can use sports to get back into the world—the wheelchair is no longer a boundary.”

A member of the Games’ national physician team since 1999, Dr. Lee sees it as an event that epitomizes adaptive sports’ unique healing abilities. “Many people think adaptive sports are fun and games,” he says. “They don’t realize it is all about rehab. Adaptive sports keep the rehab in motion—and keeps the injured moving forward.”

Both Lee and Brown see an added value in the sheer numbers competing. “The modeling between a new vet and a worldly vet, who has been to the Games and been out in the community is remarkable,” Brown says. “It’s worth probably more than any therapist or hospital program could ever do. It’s one thing for an able-bodied person to tell them ‘you can do it’—when they see fellow vets doing it, it sinks in.”

For more information on the Paralyzed Veterans of America and the Wheelchair Games, visit: www.pva.org

Have additional stories you want to share?  Let us know in the comments!

 

Click me

Topics: adaptive athletes, spinal cord injury, mission able

How A New Technology Is Helping Paralyzed Patients Regain Use of Their Legs

Posted by Mens Liberty

Apr 14, 2014 2:00:00 PM

Before Rob Summers had a spinal cord injury, he was a pitcher for the Oregon State Beavers with a win in the College World Series under his belt. He dreamed of being a major league baseball player. Then, on July 12, 2006, a car veered into his driveway and hit him as he stood outside his house. At 20, he was paralyzed from the neck down. Though he had some feeling below the waist, doctors said he would never walk again.

A decade ago, that may have been the end of the story. But Summers, along with three other young men with spinal cord injuries, have been given a new treatment--an epidural stimulator implanted over the spinal cord--that could change the way we think about paralysis. All of these patients, once completely paralyzed from at least the chest down, can now move their legs. The treatment, described in a study published today in the research journal Brain, is the result of research from scientists at the University of Louisville, UCLA, and the Pavlov Institute of Physiology, with funding from the Christopher & Dana Reeve Foundation and the National Institutes of Health.

Summers was the first to get the implant, and a study discussing his recovered motor functions post-implant was published in 2011.  Now researchers know that his results can be repeated--including on two patients diagnosed as "motor and sensory complete," meaning they were never expected to gain back any function at all. All four patients have gained back movement of their toes, knees, whole legs, ankles, and trunk to varying degrees when the stimulator--which mimics signals that the brain usually sends to the spinal cord to initiate movement--is turned on. And over time, with training, they've been able to gain back more movement with less stimulation, showing that the spinal cord can improve nerve function.

"The concept is that the brain sends a simple straightforward signal, the spinal cord responds, and it has complex signals that execute the details of the movement," explains Dr. Susan Harkema, a professor at University of Louisville and the director University of Louisville’s Kentucky Spinal Cord Injury Research Center (KSCIRC). "That's why when we turn the stimulator on, there's a tiny residual signal that comes from the brain, which must be pretty minimal. It certainly must be very, very small and it can't be complex because there's not much remaining. If you can optimize the spinal cord, it can respond even to that faint signal."

For over 15 years, Harkema has worked to understand the role of the human spinal cord in generating locomotion. Researchers have known for a long time that movements like swimming, walking, galloping, and running are controlled by neurons in the spinal cord, not the brain--at least in other animals. But humans were thought to be different. "When I started my career, I was asking whether the human spinal cord had any of those properties," she says.

Harkema studied people with complete spinal cord injuries for over a decade, gathering evidence for her hypothesis that it was possible to change the output of the nervous system with the kind of repetitive training associated with walking. This led to a therapy called locomotor training--where patients stand and step with body weight support and a treadmill--that's just beginning to take hold. Locomotor training only works, however, for people with incomplete spinal cord injuries. Anyone with a complete spinal cord injury (someone who lacks all motor control and feeling below their injury) won't benefit. But even patients with complete spinal cord injuries can benefit from epidural stimulator implants, according to the new study.

Initially, Summers hoped to do rehab with the Reeve Foundation's NeuroRecovery Network, but he couldn't get in. "For me, the spinal cord injury affected my core strength. Even after going back to TIRR [The Institute for Rehabilitation & Research in Houston] a second time, I still didn't qualify. It was at that point I opted to go to the research side," he says.

In December of 2009, he received an epidural stimulator implant. "Going into it, I spent months reading every article dating back to the 1950s that had ever been written on epidural stimulation, animal models, and hypotheses--the science behind it, the theories that went along with it," he says. "After the surgery was over, it was kind of like, 'That was step one and now the hard work begins.' It takes me back to my athletic mindset days."

On the third day of post-implant therapy, he was put in a harness over a treadmill, and stood independently for the first time in four years. "In the moment, it was gameface on. I didn't really think about what was going on except the mission at hand, and as soon as we were able to reflect on what happened, it was tears in joy," he says.

About six months into his therapy, Summers was sitting on a table hooked up to electrodes, surrounded by doctors and scientists. He was talking to his head trainer therapist, and started laughing. "You should take a look at this," he told her. "I can move my toes on command."

"Her jaw about hit the floor at that point," Summer says. After that incident, Summers began voluntary movement training. Now he can move his toes, ankles, knees and hips, He can do sit-ups, he has increased muscle tone, and better blood flow and circulation. Thanks to his discovery, the three research participants following Summers regained voluntary movement almost immediately after receiving the stimulator implant.

All four of the participants have varying levels of movement in their legs. "They all can move every joint, but how many times or how much strength does vary across them. We don't know if it's because of differences in injuries or the time they were implanted. Also, as we implanted and trained, we learned from the person [who had received the implant before]," says Harkema. It will take us time to sort those things out, to understand how far this can actually go and who's more likely to respond. What was surprising to us is that four out of the first four all have responded."

The participants have also seen positive changes in the secondary consequences of their spinal cord injuries--problems like poor heart function, poor circulation, atrophy, and bone density are all getting better.

Now Harkema and the rest of the research team need to improve the epidural implant technology. The stimulator used on the first four participants is an off-the-shelf stimulator used for pain management. The interface is too slow, and it requires each patient's control algorithm to be changed periodically by a human being.

Harkema would ideally like a voice-activated interface (or one that can be activated with a single button). Also, she says, "the stimulator itself needs to be more flexible. Right now, if you want to change configuration, you have to turn it off and start it up again. There's a hardware redesign and a software redesign that needs to happen," she says. Looking further into the future, she imagines a smartphone-like device that would let a patient could say "I'd like to move my leg," and the stimulator's configuration automatically changes.

She also stresses the importance of the changes in the aforementioned secondary consequences, which will most easily translate into a clinical setting.

"One of the big take-home messages is that our preconceived notions that people with severe paralysis have no hope of recovery needs to be scrutinized and looked at and challenged," says Harkema. "We purposely took individuals that by all clinical and scientific measures would be considered having no hope of being able to move or stand or change their neurological health status, especially after so many years of injury. This tells us that it's the most severely injured who need the most intense rehab."

Summers, now a motivational speaker and youth baseball coach, says that his six-day-a-week therapy has made life much easier.  "I'm in and out of a car in 30 seconds. The first time I tried [after being injured], it was 20 minutes in, 15 minutes out," he explains. "I have the freedom to go to any restaurant, go out in public, travel as much as I travel, do the things I do, and not have to worry about it."

He's hopeful that eventually, with updated stimulator technology, he'll one day be able to walk.

Blog Repost from: http://www.fastcoexist.com/3028720/healthware/how-a-new-technology-is-helping-paralyzed-patients-regain-use-of-their-legs

Topics: Interesting Articles, spinal cord injury

Redefining Superman

Posted by Mens Liberty

Mar 13, 2014 2:00:00 PM

Today I turn 36 years-old. Yes, thank you for saying "Happy Birthday". As I look back over the past year and forward to what lies ahead in the next I am inclined to ponder a few things about life as I see it and I feel inspired to share. As the fundraising process moves forward and I continue my exercise schedule towards optimal health I don't have much on that front to report, so I will share how all this is affecting the "little grey cells" as Hercule Poirot would say. Yes, I watch PBS, I'm a nerd, I know.

31 years ago today, on my 5th birthday, around dinner time a handful of neighborhood kids showed up at our Richmond, VA home with gifts for me. To this day I don't understand why the whole neighborhood does not show up with gifts every year Today. They say I'll grow out of it, but when you're young and impressionable these things tend to cling to the subconscious. It's either that, or I just flat out think I deserve it... but I digress. Among those gifts were a pair of Superman Underoos. If you were a kid in the 80s you know exactly what I'm talking about. For those who don't, Underoos were a packaged set of children's underwear usually containing a t-shirt dyed with a given cartoon character or superhero's colors and emblazoned with their symbol, along with a set of briefs to match. In my case it was a royal blue t-shirt with the yellow and red Superman "S" and a bright red pair of boys undies' with an obnoxious yellow waistband. I was in Heaven (spare me your snarky comments).

I don't know if that's where it started, but I grew up obsessed with the concept of the Superhero and bravery. The idea of a man or woman, whether they possessed a hidden power or superhuman skill, maybe they were real-life figures like Gandhi, Martin Luther King Jr, Jesus Christ, or just a pioneer family making a go of it in the old west inspired me. I was enamored with what I later learned Joseph Campbell describes as the "Hero's Journey". I devoured books about war heroes and statesmen like Jefferson and Washington, brilliant minds like George Washington Carver, Michaelangelo, and Edison, but I loved fiction too, mythology, and of course later in life, science fiction. I still remember where I was when I watched Back to The Future starring Michael J. Fox for the first time. This was the coolest thing EVER. A clever, sarcastic outcast who rode skateboards (being towed by a car mind you), played in a rock band, had a smokin' hot girlfriend (who, it seemed, he could kiss whenever he liked without getting caught), and best of all... a time machine. Not only did he work over Biff Tannen, if his first plan didn't work he could go back in time and change the plan! Brilliant. I didn't just get inspired by Michael J. Fox, I wanted to BE Michael J. Fox. I wanted to walk like him, talk like him, dress like him... little did I know years later, how much we'd actually have in common.

Then there was Superman. The towering Christopher Reeve as the mild-mannered Clark Kent. I couldn't identify with Reeves completely, but Superman is still... well... Superman. Who WOULDN'T want x-ray vision, unstoppable strength... who wouldn't want to fly? What if you really could have super-human powers? Saturday afternoons on hot summer days when the waves were flat I'd hole up on the couch and watch either Bruce Brown's Endless Summer on VHS or a nebbishy Gene Hackman get his ass handed to him by the Man of Steel on rerun network TV. Tin foil on the antennae and all. It was a cruel irony that this icon of indestructibility would fall from a horse suffering a severe spinal cord injury and again, have so much in common with me.

At first glance Clark Kent and Marty McFly have little in common, but let's look closer. They were/are whip smart. To the everyday observer they are as common as you and I. They love something with their whole heart. They put themselves in harm's way for what they believe to be right. They will fight the odds to reshape their own destiny. They both possess qualities that make them true heroes despite what they look like to the outside world.

When I was injured I was 6' tall, athletic and determined. I quit high school a year early intending to graduate via correspondence. I wanted to get on with my life. I wanted to surf, play guitar, travel the world. A big man, or so I thought, with big plans. In many ways I really was like Marty McFly, cool, self-assured, able to stand-up to the man, but like many young people I was missing a deeper truth. My heart knew it, but my head was living in the same world that manufactured these larger than life figures. I was living in a Hollywood of my own making with me as the star. Easy mindset for any kid to fall into though for sure.

Reality sets in quick when your lying flat your back in a hospital, all that 165 lbs you worked so hard to gain melting away to 115 in less than a month, but it reaches a whole new level when you go out into the world and everything that you thought made you or anyone a hero is gone. In our world today we define winning by having. We measure success by fame or humanitarian heart by the size of the donation. We award the man who can stuff a rubber ball into a round hoop and condemn the man who stands up to government corruption. We worship the founders of billion-dollar companies with zero regard for the way he treats his own family. Then there's the young people, every ad campaign, billboard, news article and magazine cover seems to dictate what it means to be sexy or worthy of respect. These impressionable minds bombarded with an unattainable ideal that doesn't exist introducing confusion and pain into their already complex lives. Our entire paradigm of what defines true heroism is buried somewhere under the murky distortions of materialism, phoney political rhetoric, subtle racism disguised as national pride and our insatiable quest for the status quo. What makes it even more insidious is that somewhere along this descent we allowed our media to somehow influence mass public opinion into thinking that those with less or the disabled are some sort of yardstick for what suffering is. They are trotted out as somehow special, poster children for courage and celebrated in an effort to convince ourselves that despite all our own difficulty someone "always has it worse". I am just as guilty of that as the man on two feet. Suffering is just suffering. There's no deeper meaning here.

To redefine something means to reexamine or reevaluate especially with a view to change. There are two types of people in the world, truth seekers and truth doers. Truth seekers will exhaust endless hours and resources on the search. They will talk all day, ponder, read... even write... about truth, yet they forget one thing, when confronted by truth, action fostering change is demanded. The truth doer is one who when faced with truth has no need to look further, only change. The truth doer redefines what is possible because at the core of their world view is one constant, the only constant, change. So today, I'm putting out a call to the Truth Doers out there, we must redefine what it means to be a Hero.

I said in the beggining that this posting was the result of looking back over the past year. As I have begun this physical process it has mentally begun to unravel many fears and frustrations that settle in after living with spinal cord injury for so long. They become such a natural part of everyday life one often forgets they were even there. In the hero's journey there is usually a point of their facing the abyss.Theseus had to defeat the Minotaur in a labyrinth of shifting floors, moving walls and total darkness to unlock the key to the labyrinth itself. Often the lesson is lost on the excitement of the story, but if we consider it we see that the labyrinth is the mind and the Minotaur and shifting walls and floors are nothing more than our own grotesque fears living among the ever-shifting, self-deceiving perceptions of ourselves. So I pose the question... is the real Superman the man who saves the world or the man who saves himself from himself? If so, does this require good looks and fame, or any number of material things?

Today Marty McFly is just another pop icon left over from a simpler time, but the man Michael J. Fox has faced time head on within his very own body to emerge as a voice for those in need of stem cell treatment. What would have happened if Michael had buried himself under a mountain of anti-depressants and booze, holed up away in some mansion while he wasted away? What if his only legacy was a clever, witty sitcom star who suffered an untimely demise? Someone else would have inevitably answered the call, but it didn't go that way did it? The real man, in a real world, looked into the abyss of fear, of death, of suffering and said, "How can I be of service?". To the victor go the spoils and I defy anyone to convince me that the work he has done in the last 5 to 10 years pales in comparison to his Hollywood stardom. The man who conquered time did it because of his illness, not in spite of it.

So it is with Christopher Reeve. I say his finest hour was not his time on the silver screen, but his determined hard work in the face of complete immobility to bring stem cell research to the forefront of U.S. government healthcare policy. I have a friend who had the privilege of watching him work, directing an entire film from his wheelchair post-injury. Relentless, composed, devoted... thrilled to be working. Directing a movie is a massive undertaking for any able-bodied person. But when you're a real Superman... yes, meditate on it.

These men are only 2 examples. Individuals who have discovered their true selves, their inner strength in the face of impossibility. I use them here because of the connection I share with them, but there are countless others. Who inspires you? How do you define true heroism? Have you ever researched the amount of people who reached their greatest success after the age of 40? What about the people who made world-changing contributions and never received a college degree? How about those who went from poverty to riches on hard work and determination? Hershey went bankrupt 9 times before he made his millions in chocolate. Abraham Lincoln was born in a dirt floor shack and was entirely self-educated. Beethoven was deaf. Ray Charles was blind.

After you have considered all I have said, you have thought about who inspires you and why, I want you to do one more thing... I want you to look in the mirror, ask yourself... What about me inspires me? Who am I really? Because ultimately, you are the only Superhero you will ever need and finding that man or woman within yourself will save the world (your world), turn back the clock, get the girl (or the boy), and you will never be the same.

That's all for now. I need hang up my cape and Underoos and assume my inconspicuous alter ego, pour a cup of tea and watch a little PBS. I'll finish saving the world tomorrow... after all it's my birthday today.

Topics: spinal cord injury, Spinal Cord Injury with Caleb

Coming Together - A Community for the Cure

Posted by Caleb Bartlett

Nov 26, 2013 9:17:00 AM

In 19 years it has never ceased to amaze me how much behavioral psychology is at play around Spinal Cord Injury. There are always the personal, day-to-day battles with victories and losses a person in a chair faces just living life, but one of the greatest obstacles toward complete recovery from a spinal cord injury is often the sluggish and competitive community surrounding it.

This community of patients, doctors, therapists, trainers, caregivers and family make up a fraction of the global health care landscape, but the trickle-down effect of the recent trend in medicine to be the first across the finish line has had enormous implications. Everyone is vying for being the best treatment, most effective technology, the accurate results and the one to hold the trademark that the motivation for saving lives and truly finding a cure has taken a backseat to this materialistic ideal of "Look at me and what I did."

The ones needing the cure aren't helping either. Quads are jealous of Paras cause they're more independent... the Paras are pissed caused Quads get more attention... the men resent the women cause they can get a date easier and the women are sad because men can catheterize themselves safer. You think I'm kidding, I wish I was. I've received messages from spinal cord injured people telling me I was wrong to get stem cell treatment because I might be disappointed!

My all-time favorite line is when anyone, be they an industry professional or fellow spinal cord injury, says to me "I just don't think it's a good idea cause I don't want you to get hurt." Would someone please tell me how as a society did we become so passive-aggressive then have the unmitigated gall to pat ourselves on the back and call it compassion? At the risk of this post turning into a rant let me explain why I bring this up.

In order for healing of any kind to take place whether it is mental, emotional or physical it requires an environment. Think about disease, it festers in a climate suitable for its gestation. Health is no different. Why do we wash our clothes, vacuum our floors, bathe daily and brush our teeth? We want to create a healthy place for life to flourish.

The ultimate environment for anyone to make any headway in the face of spinal cord injury whether they have received stem cells, any other radically progressive treatment or not any at all there must be an equilibrium. Yes, a healthy skepticism can be a valuable thing as long as it fosters research and an honest exchange of information, but once we lose sight of the ultimate goal and the needs of those who have been injured to make a full recovery we negate any chances of true progress. I bring this to light today because we need to get on with the business of healing. I need to get on with it and so do you. We have to create a climate for a cure.

To those of us in chairs I am putting out a call... to cut the crap. Yes, being paralyzed really, REALLY sucks. It hurts and affects every single area of our lives, but we're not alone. There's not one spinal cord injury on this planet, there are thousands. All suffering the same fears and dreaming the same dreams. Someone may have more or less than you, but we all want to walk again. We may not all achieve it the same way, but who are we to dare criticize a fellow survivor for how they choose to reach that goal?

To the doctors, trainers, and therapists... I sure love you guys, and G-d knows we're grateful, but do us and everybody else a favor... get over yourselves. Just because you are doing research, helped someone in a chair learn to transfer themselves or got them to a certain level of independence does not mean you've solved the problem. Just because a task is easier doesn't make it better. Catheterizing is still catheterizing whether you do it on your own or someone does it for you. Learn to listen, really listen. You are an outsider and respect it. You will never be able to fully understand, so don't lull yourself into thinking you do.

Finally, to all of us... whatever role you play in this quest... get on the same team. Support each other. If you want stem cells, get'em! If you just want to do therapy, do it! If you want to go holistic, vegan, Chinese herbal, shamanic, yoga, and get naked around a bonfire I say go for it and more power to you! We have to build the environment for a cure.

The cure. The cure is our mantra. The cure is the goal.

Topics: Caregiving, medical research, spinal cord injury, Spinal Cord Injury with Caleb

Understanding Spinal Cord Injury: Part 3 with Caleb

Posted by Caleb Bartlett

Sep 4, 2013 10:41:00 AM

Caleb BartlettThis is my third part in the series Understanding Spinal Cord Injury and I want to again thank all of you for your amazing support. Last month I allowed all of you to "join me in the shower" by sharing what daily life is often like on a physical level for someone with spinal cord injury.Today I'm going to talk about the mental and emotional effects of a trauma-based injury. Something worth pointing out here is that one thing I have observed over the last nineteen years is that while the nature and physical outcome of spinal cord injury may vary extremely from person to person, the psychological results are more often than not very much the same. Again it bears repeating, these are my personal experiences as I have lived them. There are exceptions to every rule, so if you are reading this and have had a very different experience then feel free to write in and share. The purpose of this blog is not only to document a process, but to  encourage healthy discussion and the sharing of information.

THE MENTAL & EMOTIONAL EXPERIENCE

In my previous posting I tried to stick to a chronological order of how my injury and physical care developed over time. The mind's response to trauma is a bit more nebulous so laying out a step by step order of difficulties is well... a bit difficult. There are many more contributing factors to the emotional pain than a simple "Ouch, I broke my neck and it really hurt". There is the shock of the initial accident, the fear introduced by the doctor's initial diagnosis and prognosis, the trauma of time spent in a triage center, the battle back to a modicum of health through therapy, the reality of a very different life at home and the burden of the suffering you see in the hearts of those you love. Any one of these can be compounded and magnified by any number of factors; the mental fortitude and psychological state of the injured, their home life and how they were raised, age, spiritual path, family and community support, lifestyle pre-injury, quality and quantity of physical therapy and amount of return, and that is only a partial list.

Caleb Bartlett

I must state here before going any further that I am a profoundly blessed man. My life has been far from easy, yes I have suffered, but I can honestly say I have been loved. Years from now, when my life is over and I am ready to close my eyes and say goodbye to this dimension of reality I will know I have lived a life filled with and surrounded by love. Real love, not the Hollywood lie that panders and patronizes, but true, honest commitment that will take a bullet for you, go to hell and back with you and still look you in the eye and call bullshit when you need it most. Everyday of my life my family amazes me. My friends who have been there for me. You guys know who you are, and you may never know or understand the dark moments you were there to pull me out of, but you did and I love all of you. It is because of you that I am here and healthy today.

When I was 10-years old we lived in Stuart, FL. My mother's aunt was in her 80s and lived alone in Ft. Myers which is only a few hours away. My grandmother would fly down from New York and visit her every winter and since we were not far they decided to visit us in Stuart. We were living in a second-floor apartment at the time and 48 hours into the visit my great-aunt fell on the stairs and cracked her hip. I can easily remember her curled up on the sidewalk at the base of the stairs and being very puzzled as to why she whimpered quietly like a small child for her mother who had been dead for over forty years. Trauma and pain combined with fear cause us to quickly revert to childhood and the need to be protected. The main reason a child cries from the pain of an accident is not necessarily the pain itself, but the terror it feels when its most basic survival instincts become so violently threatened. As we grow older skinning our knee, touching a hot dish, banging our head, etc doesn't seem such as big a deal, we wince in pain, shake it off and laugh about how silly we were. It takes a bit more to make us "run home to momma". It is usually something that causes us to come face to face with death. Soldiers on the battlefield have been known to call for their mothers as they lay dying. Such is the nature of intense, life-threatening trauma for its core, central effect is to send us mentally back into the safest, securest reference point we have in our psyche, the protection of the mother. If the mother is not available or it is trauma beyond her capability of fixing we withdraw mentally into the subconscious and essentially block out whole parts of ourselves to escape the pain and suffering. This is the root cause of Post Traumatic Stress Disorder.

It is actually harder for me to talk about the accident itself now nineteen years later than the days and weeks that followed simply because it means something vastly different now than it did then. Strangely in the days and weeks after the injury it was talking about the future that was the source of fear and pain. The in-between years was the revelation of "Holy shit, what have I done?!" that was the toughest topic to truly accept. Each moment created its own set of issues and it would be a long time before I could sift through and come to terms with most of it.

I was raised in the Charismatic/Evangelical Christian church. I was taught to believe that the Jesus Christ who walked the earth 2,000 years ago performing miracles of healing still did so today through the work of his Holy Spirit and those miracles are still available to all. As a 16-year old coping with just the initial fact of the accident itself that philosophy was much better than anything the doctors were saying so I entirely immersed myself in my beliefs. Many of you may have known me all my life and are still involved in the Christian church. I may get offensive here, but it is not my intention. When blind belief of religious dogma and intense psychological trauma brought on by physical suffering combine without being put in check they form a dangerous cocktail of denial that can take years to breakdown, sometimes it never does. With the best of intentions I buried myself under a bandage of denial that caused me to make poor lifestyle and health choices, hurt loved ones and even mismanage personal finances. I will state here unequivocally that one of the earmarks of true spirituality is being brutally honest with yourself. I will be addressing belief and spirituality in a later posting in detail, but let me make one thing very clear. Yes, I will acknowledge I have been guilty of denial through misplaced belief in the past, but I will never, ever trade the lessons in hope and courage in the face of impossibility I learned through study of the Biblical scriptures during that time.  everything in life happens for a reason, but a truly enlightened individual will never mock the beautiful qualities of faith, hope or love in another human being no matter how misplaced or misguided they may be.

Under the blanket of denial I buried everything. The fear, the frustration, the anger, the blame, the shock, the tears, the grief, the embarrassment, the shame and whatever else even  resembled pain. After about three years in mid-1997 the stress of all that bottled up mental garbage started finding physical outlets. I started having panic attacks almost 4-5 times a week with no idea what they were. I would lay awake in bed and shake like a leaf in the wind for 3-4 hours and then pass out exhausted. This would continue for another 6 years, but gradually less and less as I figured out on my own how to breathe my way through them. I became a nervous eater. I could not handle sitting quietly so a bag of Doritos or potato chips became a comforting drug for a mind that felt on the edge of breaking out into a fit of screaming at any moment.

Although I couldn't scream if I wanted to. I don't even laugh like I used to because my ribcage muscles are paralyzed. Then came the digestive issues. I don't think in 15 years I've gone a full week without some form of stomach pain. One of the major symptoms of PTSD is digestive trouble, mine was so severe that even after dealing with the mind, the damage remains that was done in the body. Mentally and emotionally I started exhibiting passive-aggressive behavior patterns and forgetfulness. Worst of all I began forming small, subtle lies. To myself first and then to others. I would gloss over the truth and tell others what I thought they wanted to hear thinking that this was a form of faith that would turn a given situation around to what I wanted it to be.

Then came the addiction. I have never been a "substance abuser", but I found other outlets as a means of escape. The internet, chat rooms, hours of movies or TV, sugar and snack food, and of course porn all kept my mind occupied. This in and of itself became a source of frustration because I couldn't even masturbate if I wanted to because I can't even unzip my pants without assistance. Too much information perhaps, but it's time we got real here folks. When I was injured I was 6' tall, athletic and popular. I returned home from the hospital atrophied, scarred and disfigured completely ashamed and self-conscious. I will be addressing dating, relationships and disability in another blog, but what really added insult to injury was that the raging hormones in my body ceased to elicit pleasure as my confused nervous system reacted to sexual stimuli with nausea, shakes, my heart racing, aches and shooting pain. Finally, I gained weight. This compounded everything with body-image issues and shame.

In 2000 I moved to Long Island. I decided to attend college after six years of being out of school. For the first time in my life I was not attending church on a regular basis and with the world of literature and study opening up to me along with the reality of having been in a wheelchair for a good deal of time thus far I hit a wall. My preconceptions and fairytale  ideologies began to break down. On the one hand I was consciously dealing with the denial, while on the other trying to stem the bleeding of the open wound it created. I'm became
quiet and withdrawn as depression set in. Those who have suffered from real depression know you don't just cheer up, even when your happy your sad. It's like a lead weight in your subconscious. One positive in all this is that I have family and a few close friends who are a talkers, avid, professional talkers. We put all the cards out on the table. If you feel it, say it now or explode later. This was and has been a tremendous blessing because I was afforded the rare gift of being able to battle my demons in a non-judgmental, supportive environment. Another gift is that the Lords of Destiny saw fit at my birth to program me with an intense passion for self-analysis and the desire to transcend. This to me is the embodiment of the concept of Grace. While karma may dole out some heavy-handed happenings during our time on this planet the beauty lies in the truth that the very same karmic force has endowed each of us with a unique skill set required to rise to the challenge. That my friends is Grace.

The first two breakthroughs I needed came around the same time. First I had to face the fact that this happened, period. Also, I had to accept that it was not my lack of faith, lack of hard work or sin that had kept me from being healed. The third part of the realization being that it was time to take a serious step towards living my life as an adult, and taking my physical health, exercise, diet, education and career into my own hands instead of covering  my irresponsibility under a pile of excuses and calling it "waiting for God to reveal his plan". These three decisions were the integral parts of facing the reality of my injury and how I'd handled it up to that point. The second breakthrough was somewhat gentler, but imperative. I began to study and understand the nature of post-traumatic stress. This helped to alleviate the guilt and inner-turmoil over the aspects of myself I'd grown to hate and become so deeply ashamed of. While yes, I was taking responsibility for my actions, I was also learning that I could not be blamed for the way my brain was wired to respond to trauma. These two key changes gave me a place to start, a platform from which to work. I was no longer fighting blindfolded with a cardboard saber.

Little by little, step by step I began to filter through the detritus. With each new revelation came deeper peace. Let me say this, you must DO something. It is not enough to recognize the problem. Do I always do everything I should when I should the way I should? No. Do you? No. We take steps. One of the first actions I took was self-discipline by eliminating fast food and soft drink and increasing my fruits and vegetables. I returned to therapy and got  myself
into a wheelchair that increased my stamina, cardiovascular health and independence. Self-worth and purpose began to replace fear and shame. I began to build relationships with others like myself who had suffered difficult circumstances in their lives. Sometimes just sharing our story or laughing at a similar experience proved to dispel the cob webs just long enough to find a new level of clarity. Were there setbacks and bad days? Of course! Even bad months and bad years, but if you're going to fall, fall forward. I began devoting myself to work and education. The ultimate goal being to pinpoint a fear, no matter how small, and move toward it, not away. By taking action you learn to recognize the elements that have been at work in you mental self and transmute them into their nobler qualities.

As one journeys deeper and deeper into the core of who they are it can get ugly. Especially if you're trying to accomplish other things as you move on with life. Nobody has time to stop and "fix things" while they attempt to raise kids, build a career, stay healthy, maintain a home, etc so the road to self-realization can be one that seems to move forward and backward at the same time. In August of 2010 I had suffered a major setback in my career financially and it affected some important relationships. It triggered a regression into such a depressed state that I was done. I had gone as far as I could go into dealing with the most painful parts of myself without some sort of profound change. I was literally ready to end it all and by that yes, I mean suicide. Now, what I'm about to share are the key elements to what I feel was a personal spiritual experience that occurred within my own consciousness.

At around 8 o'clock one evening that first week in August I pushed myself down the street to a quiet back alley where I like to go to get alone and think. I was the lowest emotionally I'd ever been and the great progress I had made only seemed to add to the pain as feelings of failure began to set in. For the first time in years I did what I can only describe as prayer. I said, "I don't know if I'm talking to Jesus, the Devil, Buddha, an Alien, Krishna, the Cosmos or anybody at all, but I know something out there is a lot bigger than me. I know if you have the power to fix anything in my life than you must have the capability to hear me. I need help. I need help now cause if I don't get it, I'm done." That was it. Did I feel better? Nope. I turned around and went home. Within 72 hours I received a phone call from a business associate in Los Angeles. He invited me to come speak to a group of students at the Art Center College of Design in Pasadena. I said yes and the next month I was on a plane with my mother and brother for California. To this day I don't know why or how and I won't go into details because they are intensely personal, but while on the West Coast over a period of 6 days I went through a profound experience that introduced me to the practice of meditation. Returning home refreshed and with an open heart I let myself step away from much of what filled my days work-wise and I put all obligations aside to rest and meditate.

On a quiet afternoon in October I was sitting in my office. I had been pondering the concept of judgment. For the first time in my life I came to an understanding that judgment is the act of separating out parts of ourselves and others and deeming them as more or less worthy of love. Judgment is often a perception based on incomplete or missing information. It is also a conclusion drawn based on a belief system or conditioned response. Through an emotional investment in the outcome a given set of circumstances judgment always determines something as wrong and therefore unworthy. Our natural human proclivity to attach ourselves what feels good denies us a deep understanding of true compassion and therefore the ability to see the beauty through the pain and the lesson on the other side. As I was rolling this fresh concept around in my heart and mind I felt drawn to meditate. I closed my eyes and began to focus on what pure, unconditional love really is. The only real life picture I could formulate was holding my niece in my arms the day after she was born. I've never known a more pure moment. The sheer power of that experience was what helped me understand the pain my parents went through watching me suffer what I have. Sitting there with the image of my niece in my consciousness tears filled my eyes as in my arms I saw myself cradling my damaged and broken spinal cord. I held it delicately and loving and whispered the words, "I love you and forgive you" as, for the first time in my life, I let myself love myself. Not only myself, but my injury, the wheelchair, the pain, and the suffering. I wept for two hours straight and left that room changed forever.

Since that time my life has radically changed. Yes I have had incredibly difficult moments, but my mind is at peace. I'm still a work in progress, but I can honestly say I am moving forward. I want to get out of bed in the morning. I get offended less. I'm comfy in my own skin. I got out in public and don't hurry past my reflection in a store window. I'm ready for life. Do I have it all figured out? No, but I am taking each day as it comes. If you're reading this and going through something tragic be encouraged. It may sound cliche', but it is true that the answer really is inside of you. Turn off the TV, clear up the clutter, take some time to get your head quiet and then do the work. No-one else will do it for you. You may feel alone, maybe you truly are, but if you take the steps you'll find the support you need. When the student is ready the teacher always appears.

Thanks for reading.

Topics: spinal cord injury, Spinal Cord Injury with Caleb

Losing my temporarily able-bodied status, one physicians story

Posted by Sarah Woodward

Aug 17, 2013 9:57:00 AM

Today I wanted to share this amazing post from physician Sandra Shea. Originally posted over at the awesome KevinMD.com, she has a powerful reminder to share about how we think about our bodies and about people with physical disabilities like spinal cord injury.

--------------------------------------------------------------

I thought of Peter when I lost my TAB status.

I lost it on vacation. These things happen. Suddenly, one Friday night in Florida, I was no longer a TAB. Shouldn’t have been too surprised, I guess.

But I didn’t expect it would involve a chicken.

I should explain.

I’m a medical educator: I have a PhD in experimental psychology/neuroscience, and I teach first-year medical students. In our curriculum, the students work through patient cases that are grouped by organ system. At the end of each case, we have a wrap-up in which we highlight the case’s diagnostic features and answer any student questions. Most of these discussions are faculty-led, but occasionally they’re run by a patient whose history mirrors the case we’re studying. Peter was one of these.

Like the patient in one of the neurological cases, he had fractured his spine in a diving accident. In a matter of seconds, he’d been transformed from a typical teenager to a tetraplegic (someone paralyzed from the shoulders down), although he retained some motion in one arm.

Peter opened his sessions by telling the students that he would answer any questions they had about any aspect of his condition.

“The doors are closed, but your curiosity should be open,” he’d say.

Each year they’d start hesitantly, but eventually move into delicate questions that ranged from how bowel movements were completed to how he participated in sexual activities, and with each question he and they developed a stronger tie. Peter would answer their questions quickly and candidly (even when they asked his opinion of physicians).

Then, one day, a question stopped him cold.

“I was wondering about the terms we see applied to patients with spinal-cord damage,” a student said. “Do you prefer ‘handicapped,’ ‘crippled’ or ‘disabled’? Does it really matter?”

Peter paused, flushed, bit his lip and took a deep breath.

“Yes,” he said. “It does matter. Some of my colleagues prefer the term ‘disabled’ to ‘handicapped,’ but I have no strong preference between those two. I would, however”–he nudged his electric wheelchair forward–”strongly emphasize that I and most of the people I know would like the word ‘crippled’ removed from the language.”

He paused and looked around.

“The word carries demeaning and perhaps hateful connotations. To many, calling someone ‘crippled’ is the same as putting the person in a box, sealing it and tossing it away. The other terms imply a process, not an ending. And you TABs just don’t quite get the difference.”

The students looked at one another; whispers ran through the room.

Peter smiled.

“Yes, TABs. You’re all TABs,” he said, “except you.” He nodded at a young woman in the front row, her foot encased in a walking cast.

“What do you think a TAB might be?” Peter asked.

We all just looked at him.

“Temporarily able-bodied,” he said.

“If you think about it,” he continued, “being able-bodied might be all that you know. You’ve always gone where you wanted when you wanted and not been slowed by injury or disease. But that doesn’t mean you’ll stay that way. Someday you’ll probably need crutches or a cane, or be in a wheelchair for a little while or maybe for the rest of your life.”

There was a thoughtful silence.

Then one student spoke. “So it’s sort of like the Sphinx’s riddle in Oedipus Rex: ‘What is the creature that walks on four legs in the morning, two legs at noon, and three in the evening?’ The answer is a human being. A human being crawls as a baby, walks at midlife and uses a cane when elderly.”

“I’ve never thought about it that way,” Peter said. “But yes, in a way, that fits.”

A few years later, Peter died after a series of strokes. He was not yet fifty.

I thought of him as I sat in the Key West emergency room, waiting for a pair of crutches and a thigh-to-calf knee brace.

My injury had come about earlier that day, as I was stepping down from some uneven stairs onto the sidewalk. Nearby, a hen and her chicks were foraging. Descendants of the fowl bred here long ago for cockfighting, they were part of the population of chickens that runs loose on the island. The local lore has it that, since Key West is a bird sanctuary, the chickens can’t be harmed.

A skateboarder heading along the sidewalk must have taken that to heart; he ducked around the hen and rolled directly into my path.

Stepping back up the stairs to avoid a collision, I slipped, landed with all my weight on my turned leg and felt something slide and something tear. The slide was the kneecap dislocating, and the tear was later revealed to be the posterior medial meniscus, the knee’s cartilage “shock absorber.”

Some months from now, after surgery and rehab, I hope to regain my TAB status.

But even as I put away my crutches, I hope I’ll never put away my memories of Peter, his generous spirit, and all of the lessons he taught.

Sandra L. Shea is an associate professor, department of family and community medicine, Southern Illinois University School of Medicine.  This piece was originally published in Pulse — voices from the heart of medicine

Topics: doctors visit, healthcare professionals, spinal cord injury