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Incontinence Support Blog


Posted by Caleb Bartlett

Mar 28, 2017 1:27:35 PM

These days it seems like every news outlet, social media platform, and Lord knows what else is buzzing with speculation over what is going to happen with healthcare. Will they abolish Medicaid? What will happen with Medicare? Will disability benefits be cut? These are tough things to consider. Many people are concerned, some even terrified what will happen to them if these things become a reality, and understandably so. I certainly understand that there is no one-size-fits-all approach, the situation is vast and complex. There are many, many people who simple can’t work, can’t care for themselves… maybe you are reading this and you are caregiver or family member of someone who is the victim of stroke or brain trauma. What can you do?

If history has proven anything it is that in times of great change and upheaval if people will push aside fear and work together they can find a way. The answers to the troubles of our nation and the planet are not to be found in fighting each other out of fear, but coming together in peace to fight the fear itself. Take heart reader, you are not alone. Do you need a steady, work-from-home income? Get online, read, improve yourself. Find out what is out there. Depend on yourself, not Uncle Sam. Do you have health issues that are largely diet-based? Make some changes and reduce your dependence on costly medications. Maybe you have paralysis or a similar condition, express your concerns to your doctor, connect with others like you in your community and as a group seek out an attorney who specializes in disabled rights. Maybe you live in a rural area and have a few acres of land. Get involved with the slow food and local food movements in your area. Start providing healthy food for those with greater disabilities. Speak to your local politicians. Who knows… you could start a grassroots community movement that could change the face of healthcare forever.

I believe in people. I believe in the strength and goodness of the human spirit. On the other hand, I do not believe in fairy tales or castles in the sky. Real change takes real action, and action takes work. Don’t let the years of physical difficulty take away your will and determination. I hope this message encouraged you. I believe one day in the near future I will get a headline across my news feed that reads, “Man in wheelchair redefines medical coverage for millions”.

Thanks for reading.

Topics: Spinal Cord Injury with Caleb, Guest Blogs, incontinence

Resolve To Be Resolute

Posted by Caleb Bartlett

Jan 27, 2017 10:47:53 AM


I am still trying to believe it is 2017. I remember when 2000 seemed a long way off. With each new year comes plans, resolutions, to-do lists, and the like as we make a renewed attempt to better ourselves and our lives. I know I do… lose more weight, pay off debts, eat better, take on a new project, sound familiar? The hard part is always following through. Mustering will power for any challenge in life is the real challenge itself. We love it when our favorite athlete scores a touchdown or gains a knockout. We cheer and shout as they seem to conquer their opponent with ease and power. What we do not realize is that victory was not won in that monumental moment, but long before, in little moments, moments when no-one was looking, no cheering crowds, no fancy uniforms, no cold drinks, no rub-downs or massages. That victory was won in painful increments, cold and snowy morning runs, sweltering hot wind sprints, blisters, bruises, broken bones and teeth, beat-downs, and even losses. Maybe even the laughter and mockery of haters, or the lack of support of family and those they look up to. These are the moments when the victory is truly accomplished.

At the risk of becoming an advice column… let’s rephrase… we call it an encouragement column. Either way you slice it, I hope you come away from reading this feeling motivated and ready to move the ball down the field of life. Maybe your reading this and you’re a new injury or diagnosis, or maybe you’ve been dealing with a physical issue for many years. No-one likes limitation, illness, or pain. It can lead to depression, tension in relationships, emotional breakdowns, and even more illness. It seems giving in to the familiar and comfortable makes us feel better. Fatty comfort foods, TV binging, and other addiction-forming behaviors can crop up, weakening us further, and providing only a short-term, superficial solution.

So this new season of 2017 I say to all of my cyber readers who may be struggling with the first step, GO FOR IT! Do you want to get in shape? Take the first step and look for a gym. Want to get smarter? Get a library card, or open an Audible.com account. Want to eat healthier? Find a nutritionist. The journey of a thousand miles starts with one step. Then… stick with it. Do ONE THING every day for twenty-one days and it will become a habit. Once a habit develops it becomes an instinct. When that change takes place those little victories become greater and greater.

Start letting your will power define you in 2017. Make it your best year yet. Resolve to be resolute in your resolution. Sound like a bunch of motivational mumbo-jumbo? Only if you talk yourself out of it. Believe, do, and move forward. I had a high school teacher who said that “Can’t never did anything”. I believe this to be true.

What’s your 2017 resolution? Do it.

Thanks for reading.

Topics: Spinal Cord Injury with Caleb, incontinence

A Holiday Message...

Posted by Caleb Bartlett

Dec 22, 2016 1:45:08 PM

Well where did that year go? I think 2016 will go down in history as one of the strangest years in history. I hope all of you made it through unscathed and positive about the future. In these uncertain times it can be difficult for many, especially those of us in chairs who often depend on caregivers for help. Life in a chair can often make us feel marginalized or different, adding the holiday mayhem and social madness to the mix can trigger sadness, depression, and sometimes feeling alone… even among family.

I have been blessed with a close, caring family, others not as much, and many somewhere in the middle. I don’t really have anything to complain about, but emotions are complex and funny things. I know what it is to feel lonely even in a crowded room full of loved ones. If I can instill one thought of the minds of my readers this season, and that is, if you are alone or feeling alone during this happy season take a few things to heart.

You are not alone. Life is a difficult thing. We are all on this journey, learning and growing. Each of us has something, some may be worse than others, but we share the same feelings and joys and fears. Take the time to look around. Count your blessings. That may sound trite, but it works.

Take time to tell the ones you love that you love them. You get what you give. Feeling alone? Show someone else they matter. Thank them for something, anything. Channeling your emotions in another direction can be a powerful tool for changing your mood.

Forgive somebody. Never underestimate the power of forgiveness, even if it’s yourself. Oftentimes we feel alone because we’re holding on to past hurts, misunderstandings, and times when people have done us harm. This time of year, despite all the consumerism, media hype, and modern noise we endure it really is a time when people feel empathy towards others. The act of giving gifts alone causes us to value the relationships we share with our fellow man. While we’re in this mindset we can take advantage of this time to mend the past and right a few wrongs. Remember, the high road is always best. Extending the hand of forgiveness doesn’t always mean it will be returned, but that doesn’t matter. What matters is you. The peace of knowing you have done the right thing will help you beat the loneliness blues.

I know that this blog is often about living with a disability, but all the healthy living tips, how-tos, and personal anecdotes don’t mean a thing if we don’t have the peace and contentment inside ourselves. Life is more than the physical and these experiences we go through can trigger complex emotions that affect our health, daily decisions, and more. This holiday season take time to be a better person. Reach out and use the spirit of good will to bring healing and happiness to yourself and others.

May this season of peace bring peace to others through you. Thanks for reading.

Topics: family, Spinal Cord Injury with Caleb, compassion

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

A Broken Cord: Part 2

Posted by Caleb Bartlett

Oct 12, 2015 1:00:00 PM

About two weeks after my accident I was lying in the Intensive Care Unit of what is now Shands Medical Center in Jacksonville, FL when the hospital-appointed Psychiatrist walked into my room. I knew immediately she needed more therapy than I did. With a feigned look of interest she glanced over my wall that had been covered with posters of my favorite surfers in various locations around the world and said to me, "Well, we may not get you up on a board again, but we can get you down to the beach. What do you think of that?" I looked her square in the eye and said, "It's not your responsibility to see to it that I get up on that board, but you will see it happen." She left the room and never came back.

Over the years I would encounter this kind of misinformed, patronizing, arrogant hubris from every sector of the American medical establishment. From doctors to therapists to medical equipment suppliers to case workers, time and time again I have been forced to endure some absurd, discouraging statement about "the way things are" in the spinal cord world and how "there's just no getting around it". Even when there is overwhelming evidence to suggest otherwise.

However, the biggest shock of all was the prevailing doctrine espoused and accepted by the industry which states that because there are so few spinal cord injuries it does not warrant serious monetary investment to find a cure or back a promising treatment.

So we just shake our heads sadly and agree as another year goes by and with 30 new spinal cord injuries a day. There seems to be a serious flaw in the system. That is equivalent to $3 Million more in medical insurance expenditure than yesterday and it's not counting initial hospital costs. I racked up $250,000 alone in the first week of my injury and that was in 1994!

So do the math in your head. If there are 365 days in a year at a rate of 30 new injuries per day... that's 10,950 new injuries per year. Plug in the annual estimated living cost of $100,000 per year and yes, you guessed it, $1,095,000,000 in new insurance payouts per year. But there's no money in Spinal Cord Injury.

Yeah... right.

After my posting last week I did some more research. If you have suffered a spinal cord injury invariably you need a wheelchair to get around. The two largest companies who manufacture wheelchairs are Invacare and Quickie. Both companies also own several subsidiaries which make cushions, seating systems and much more. Both companies together average over $5 Billion in annual revenue. The secondary conditions of spinal cord injury are serious moneymakers. Most SCI survivors take a daily cocktail of pain killers, spasm reducers, anti-depressants, diuretics, bone loss preventatives and much more.

And you are telling me that big business sees no monetary gain from SCI?

Am I saying that money and business is evil? Not in the least. Prosperity is a gift, a tool by which a man can better himself and his world if he has the heart to do so. What I am saying is that it does not have to be this way.

But what will it take? I will tell you...

  1. We have to come together. We need ONE unified vision.
  2. We need to have TOTAL access to the most up-to-date research and their results.
  3. We need to have a VOICE on what research gets funding and which promising treatments should be advanced. We need to have a realistic timeline for results and focus on the single, most effective treatment we have to date, then back it with the full financial force of all our resources. Finally get the product to us, the end user. After all what good is all the money spent on research if you don’t spend the last amount to get it out of the lab, into production and over the finish line to those who need it most?
  4. We need to notify our insurance carriers, including Medicaid and Medicare when there is a low-cost, effective treatment for SCI and demand that they put pressure on the relevant major companies who are making a profit from SCI to directly fund the commercialization and approval of promising new therapies.
  5. Encourage private research and biotech start-ups from within our own ranks that are fast, goal-oriented and ready to get real working product out to us, the end user, in a timely manner.
  6. Never accept "No" as an answer again.

I believe it's possible. Can you see it? What kind of precedent would it set in the industry? What if we beat the industry at its own game? We have to show the world how bad we want to walk.

So what is it going to take? Before I leave you today ponder this a moment. What if there was just such a technology? Something here, now. What would you do to get your hands on it?

Get Help Now!

Topics: Spinal Cord Injury with Caleb

A Broken Cord - Part 1

Posted by Caleb Bartlett

Sep 21, 2015 8:30:00 AM

Did you know it costs, on average, $100,000 a year to live with a spinal cord injury? Yes, you read that correctly. I am not referring to normal living expenses either. That figure you see there refers to everything we need to stay alive like a wheelchair, proper cushions, chair maintenance, medical supplies, medication, doctor visits & tests, therapy, personal care assistants and more depending on your level of injury and current health. Also, another important factor is that despite being college-educated many spinal cord injury survivors cannot work in their given fields which means dependence upon some form of government program like SSID, Medicare or Medicaid. If they can work, are already wealthy or landed some sort of insurance settlement they have to buy a comprehensive insurance package and pay for some things out of pocket. Consider a few important facts...

1. Currently there are 1.5 million people world-wide living with spinal cord injury.

2. Of that 1.5 million, 450,000 reside in the United States.

3. The average yearly cost of living with a spinal cord injury is $100,000.

4. That is $45 BILLION a year in insurance expense.

5. I have been in a wheelchair for 21 years.                           

6. I have cost Medicaid and my private carrier a minimum of $2,100,000 in total.

That's a hell of a price tag for catching the wrong angle of the bottom of a swimming pool.

Now let's think a few things through. Those are numbers here in the U.S. and as they relate to me. What is the total cost world-wide? If you said $150 billion you are right. That is a lot of money. That is a very large amount of money by any standard. Let's put it into a more detailed perspective... in Fact #4 I quote a figure of $45 billion. In 2014 technology giant Apple posted a quarterly revenue of $42.1 billion. Yes, that is an annual revenue of $168.4 billion. Now put that up next to the total cost per year of spinal cord injury at $150 billion. This means that the total amount of money spent on spinal cord injury a year is almost equivalent to the annual profit of a Fortune 500 company!

I, along with my fellow brothers and sisters in chairs, have been told by the medical establishment that the reason there is no cure for spinal cord injury is because it is not common enough to warrant a major investment because there is such a very little return on investment. WHHHAATTT???!! Ok, aside from the morally wrong attitude, that's some pretty piss-poor accounting because somebody... somewhere... has their chunk of $150 billion (if not more) sitting in the bank while they check their stock portfolio on their Apple iPad from a beach in Bora Bora!

There's no money in spinal cord injury. I call Bullsh-t. Stay tuned... more on this in the coming months.

Thanks for reading.

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Topics: Spinal Cord Injury with Caleb

Disability, Marriage and True Love in Brooklyn

Posted by Mens Liberty

Jul 31, 2015 2:30:00 PM

Do you know what today is? Today is July 26, 2015. It is exactly 25 years since the signing of the Americans with Disabilities Act or ADA for short. It seems for every step forward we make as a species we take two steps back.

Every summer the Prospect Park Band Shell hosts free concerts. I have lived in the New York City area for fifteen years and never availed myself of this culturally-enriching opportunity. So upon hearing that one of my favorite artists was going to be playing this past Friday I thought it was time I added another well-rounded edge to my musical education and loaded into my Honda Element with my brother Ethan and jetted off to the big city.

I have a Love/Hate relationship with cities. For people in chairs, at least me anyway, they are like that one girl you love to love, you want to love... but... she has that one guy she's crazy about who smacks her around, he leaves for weeks at a time, then when he shows up she drops everything and runs to him. There's museums and theaters and restaurants and great music and when she calls with her bright lights and charm you run to her hoping for that big moment, only to hit the broken sidewalks and filthy puddles, high steps and cramped shops, restaurants without an accessible bathroom and Doormen who say "Oh, sure it's right up the stairs!". Arriving home filthy and smelling like car exhaust, back sore from bouncing over potholes, it's then you realize, you will always be stuck in the "Friend Zone". Like all long and emotionally complex relationships it got me thinking and between two very interesting experiences while on said city excursion and the anniversary of the ADA I came to an interesting revelation.

While I would never equate anybody's ethnicity with a disability, I can safely say that the same system which marginalizes the races and social classes treats those with a disability the same way. Most Americans do not know that most colleges and universities, including so-called "Black Colleges" refuse to institute accessible infrastructure, alternative testing and even continued training for professors on how to assist students with disabilities! This is a total violation of ADA regulations. When I attended college myself I can remember being pushed by my brother through 100 yards of foot-deep, unploughed snow to get to class only to be told by the teacher "try to be on time next time". How can anyone get an education like that?

Once through the traffic and the usual wait-in-line at the gate Ethan and I settled into our seats. As the crowd began to fill in I noticed a young couple seated in the reserved wheelchair seating. The girl had transferred from her wheelchair and was sitting in a regular chair. It was obvious she suffered from cerebral palsy, but not to the extent that she could not get around. They sat together smiling and chatting and after my brain was satisfied it had taken enough visual data it looked elsewhere. About twenty minutes later I noticed the two of them returning to their seats from somewhere like the restroom or merchandise table. This time I noticed that he too had cerebral palsy. This in and of itself is not remarkable, but these two devoted souls were determined to face the world together with the chance that their own government may never let them get married. Yes, you heard that right. While legally, anyone can get married, those in the "disabled" community who are dependent on certain government programs that only exist through services like Medicaid and SSI can be penalized for tying the knot. This government believes if those like myself who are dependent on the physical assistance of another should be monitored and watched. If you cannot work (or rather employers refuse to hire you) and need daily care and you decide to marry the responsibility of your care in their eyes then falls to your spouse. They wash their hands of you. So tell me something... if I need help almost all day long when is my wife going to work? This puts us in the place where we are forced to make the choice between health coverage, coverage often providing life-saving services, and marriage.

I will take it a step further. Inevitably the person will come along and say, "Why don't you just get a job and buy your own coverage?" Most private insurance companies will not cover 24/7 PCA assistance, so unless you have a job that pays you enough money to pay a PCA $35,000-$55,000 per year out-of-pocket, you have to utilize some form of government assistance. The system was not designed for upward mobility... or love either, but it's just that. A system. Systems can be changed.

Laws can change. People can change, but it starts with people changing themselves first. Don't see the walls that shut you in as prison walls, but mountains to be climbed. Stop seeing that chair or lack of education as one-way train to nowhere, but as an opportunity, a vehicle for change. Yes this discrimination is real. I believe we can change the world, but just not by laws or rules. You can't just tell someone to stop being a racist or a bigot because it is illegal. He must see it in his heart, that it is wrong and know why it is fundamentally against the very life force that makes us human. Change comes from the heart. That is why we can change. Because within each of us is the power to do so.

Do something today. Do it now. Change your point of view. Don't have an education? Get a library card. Don't have money? Share what food you have with someone who is hungry. Are you paralyzed? Get online and use it as chance to encourage others. Do you have a job, but it barely pays? Work harder, smarter, smile and laugh. Ring up those groceries like you're a millionaire. Do have a little spare cash every month? Support blogs like these and research projects like the Reeves Big Idea. Do you have a lot of money? Pay it forward and invest in somebody else's dream. If you don't have anything? Give words, give words of life and encouragement. These are the things that supersede laws and governments and will last when this wheelchair I sit in is a rusted mass at the bottom of the ocean 500 years from now.

Civil Rights, ADA... they are written pages that mean nothing without the spirit of the men and women who believed in themselves enough to fight for them. It is the spirit of a thing that gives it life that makes it breathe. That spirit is colorless, genderless, it is neither sick nor paralyzed. It knows no border or creed or flag. The moment we recognize this is the moment we will love each other.

Thanks for reading.

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Topics: Spinal Cord Injury with Caleb, Guest Blogs

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.

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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.

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

What Would You Think If I Sang Out Of Tune?

Posted by Caleb Bartlett

Mar 24, 2015 12:30:00 PM

It's not easy to think of things to write about. Frankly, I dread opening my blogging program for concern that I have wrote my last and I am all out of good ideas. I am probably delusional because in reality I often feel I haven't even scratched the surface of life with Spinal Cord Injury. Then I get an idea...

I am 37-years old. I was injured when I was 16. I was 4 months away from my 17th birthday. I had a job, a drivers' license, hell... I had even flown on a plane all by myself for the first time three weeks prior to my accident. I was just getting a taste of adult independence. Since my return from the hospital I have lived entirely with my family. I cannot be alone for more than three to four hours. I have a revolving door of personal care aides both paid and family to help me 24 hours a day. I require assistance with everything from bathing to dressing to cooking to using the bathroom to even rolling myself over in bed... and that's the short list. It sometimes requires two people to help me do something simple like get from the bed to the chair.

Family is devoted. Finding outside help that is reliable, well, I've fired over twenty-five people in seven years. So getting by with a little help from my friends is not always the easiest thing. The help I do have has been amazing and it is for you guys I write. Very little is said about care giving so this one is for you guys.

Imagine for a minute what it would be like if you couldn't use your thumbs, just your thumbs. Think about all the things you do every single day that requires thumbs. Now imagine your fingers. You can't move them either. How would you brush your teeth? Wait... break it down... how would you just put the toothpaste on the brush? How would you eat? Screw that... how would you even open the refrigerator door? Let's really think here. Just imagine a beautiful, warm summer day. You are sitting outside enjoying the fresh air after a long and brutal winter and as you happen to look down you notice a small, black spider making its way up your leg and disappearing into your shorts. No amount of stomping, shouting, swatting or wiggling can help you now as you can only pray that little F@!cker is 1. not poisonous, and 2. making his way towards daylight somewhere else on your person. Oh yeah, it's happened. It can make you feel completely vulnerable and powerless pretty quick... and that was just your hands. We haven't talked about everything from the chest down.

This is why every day for almost 21 years someone very committed has not only gone about their own daily routine, but also mine as my hands, arms and legs. My brother Ethan and my Mother have been the primary sources of help, but you can add my Dad, my older brother, various friends and extended family members and five paid companions I trust.

It is by no means a glamorous job. There is rarely a set schedule. It can be as simple as handing you the TV remote to as complex as cleaning you up after you ate bad food. Think it's easy? Just when you've finally sat down or fallen asleep you are needed... again. You have to lift, shift, tug, pull, push, tuck, zip, button, scratch, clip, cut, crack, open, close, cook, wash, dry, spread, wipe, clean, brush, smooth, poke, stab, salt, season, hold and fold 24/7 and then some. You forget, you get tired. You get frustrated. You laugh. You cry. You roll your eyes... all the while being the closest friend under heaven and the one thing standing between me and the nursing home, or worse. I snicker a little to myself when people ask my brother what he does for a living and then say, "Oh, that's so nice!" with that oh-that's-not-a-real-job look on their face. They do not realize the President gets more time off then he does. Every stay-at-home mom in America knows what I'm talking about.

My paid aides have braved ice storms, worked sick, showed up on late notice climbing out of their own bed after settling in for the night, sat up with me all hours while I recovered from respiratory infections and much more. It is humbling really. I am alive and healthy because of these people and it amazes me how lucky I truly am.

In a time when doctors and medical management make the big bucks, the reality of it all is that it is those by our sides keep us healthy, motivated and alive. So to all the mothers, fathers, brothers, sisters, wives, girlfriends, boyfriends, husbands, friends and aides who have never left our sides... we love you. I love you. Thank you for your devotion, your attention to detail, your heart and all the little things that bring us one step closer to a cure, to walking again and one day returning the favor even when we know there is no way we can ever repay you.

Thanks for reading.

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Topics: Spinal Cord Injury with Caleb