Mens' Liberty

Sunday, December 27, 2015

A Year of Change

This is supposed to be a blog about Spinal Cord Injury, but today, right now, in this moment I have nothing to say about SCI. I don't really want to either. Not really sure why, but it seems somehow that another posting about how much living with an injury like this sucks is not going to change anything. I certainly don't need to be told and neither do you. However, despite all of the things that we hate or that stand in our way, despite the lack of all the much needed treatments, equipment, therapies, and more that I have regularly covered in this blog... and I still stand by every word... right here now it feels almost dishonest or insincere to claim that I am angry, unfulfilled, or dissatisfied because of the discomfort of my present physical situation. Not in almost 22 years did I even think I could admit such a thing.

A year ago this time I was sitting in my home office on Long Island in New York staring out at a bleak, frozen winter landscape and wondering what the hell I was doing and despite much planning and preparation had no idea where to go next with my life. In 2014 I had received my training in a design science known as Permaculture to further my experience in sustainable agriculture, but jobs were slow in coming. My family and I had been looking for a home with land to move forward with our lives and work, but to no avail. Six months prior I had fractured my left femur bringing the intensive physical therapy to a grinding halt and negating any more progress from the stem cell treatment. On the surface it seemed like a shitty end to another shitty year. Except one thing was different.

You know the old adage about teaching a man to fish? Well I say give a man true hope of what could be and he'll do much more than fish, he'll buy the fleet. With my permaculture training I had discovered a real passion, something alive that brought real purpose to my life. Our frequent farm scouting trips had brought me out into the quiet country offering comfort and constancy. The fractured leg? Well, I wasn't dead. Even though it seemed like it was going to be a bad ending to bad year a voice inside said "You're on the path, keep going."

So I did. My brother and I looked at farms and ranches of every kind in New York, New Jersey, Connecticut, Vermont, New Hampshire, Pennsylvania, Virginia, West Virginia, Florida, New Mexico, Colorado, Wyoming, Montana, Oregon, and even Hawaii! In May 2015, after just completing my first design commission we found a farm in central Maine. Never in a million years did we expect to live this far north. I often joke that after growing up in Florida, then living in New York, at this rate I'll retire beyond the Arctic Circle.

So here I now sit, by a warm wood stove, looking out at a snow-covered Maine landscape. I have a clean bill of health from my doctor. Together with my brother Ethan we have a raw milk dairy licensed with the state of Maine. Our milk will be in two grocery stores by the end of the week and a delivery route starts next month. We own our own herd of cows, a flock of chickens, and we're getting rabbits next month. I've completed two designs and working on a third while advising on two more. I'm learning, I'm learning to relax and stay focused. Circumstances will come, go, ebb and flow. We have to release the fear.

I used to be afraid of Spinal Cord Injury. I was afraid if I didn't beat the clock it would ruin my life, that I would die having never really lived. Even in the writing of this blog I was pushing for a cure out of fear. I don't want to live afraid anymore. Living with a SCI is difficult enough without fear clouding every decision and experience. Today, I want a cure more than ever, but not because I am afraid. I want it because of hope. I'm not scared I will miss out anymore. I think I am truly learning to fish for the first time in my life, but not because I will starve if I don't, but because I love it and want to share it with others knowing there is plenty to go around for all of us.

Thank you for reading and a Happy Holidays to all of you!

Wednesday, November 25, 2015

Ears to Hear

I recently had the privilege of speaking to around twenty-five Occupational Therapy students regarding my experience with Spinal Cord Injury. It always amazes me how much I have forgotten that I have actually lived through. I get into telling stories and before long I realize that even Forest Gump would be jealous. What is truly fascinating is how as I get older and things change the same stories and experiences take on new meaning and perspective. Also, the feedback and questions I get from people who know nothing about SCI tell me a lot about what is happening and the future of treatment, especially when they come from people embarking on a career in medicine.

All too often those preparing for a career in a medically-related field do so out of a need for job security. This used to make me angry. I can see now in our day how people are motivated because of fear and uncertainty, so I try to be patient and encourage them before they really get out there in the hopes that maybe, just maybe they will understand that they could be saving a life. Every once in a while you meet a student who is there for the right reasons. This particular group seemed to be one of those good groups.

Towards the end of the Q&A one of the more outgoing students asked me one question no-one has ever asked me. They said, "Of all the therapists you have worked with, what has been the trait that made them the best?" Before I could stop myself I heard myself say, "Listening."

Listening is a rare skill. Too few possess it. Many think they do. Some actually try, but in reality, more often than not we are waiting for the other person to shut up so we can give our already-formulated opinion we have based on our own experiences, deeply-held beliefs, fears, and desires. Further more we really offer the advice that benefits our own motives and furthers our own agenda. Okay, okay, I know that's a major downer, but think about something for a minute... What is the first thing people say when you ask them if they know of a good doctor? "I recommend Dr. So-and-So, he takes time to really listen!" Do you see what I mean?

The first sign of a trustworthy person is whether or not you know they are really hearing what you are not only saying, but expressing in your face, gestures, body language, and tone of voice. This is often one of the key reasons men and women have communication breakdowns. Women read signals, subtext, and emotion. Men don't see the difference between the assembly directions on a new Ikea cabinet and an emotionally-charged conversation about where you see the relationship in five years. Listening is an art, you are not born with it, you practice it, you develop it as an act of you're own will power.

I am not going to write a long, passionate post this month. No sappy holiday-themed posts here. I am only going to offer a simple suggestion for a better end of 2015. Shut up. You heard me. Right about the time your Uncle Whoever offers his opinion on the elections and you want straighten out his deal, shut up. When your self-absorbed cousin wants to wax lyrical about their up-coming surgery and you want to swap horror stories, have another piece of pie. That's why they call it a pie hole. When you're alone, and left with all the dishes and you want to curse all those sycophantic, ungrateful wretches... finish off the damn pie and be grateful no-one took it home.

Next time it will get easier, then more so after that, and before you know it you'll find yourself actually forgetting about yourself and actually caring about that other person. Then, when you do open your mouth it will have value and weight and who knows, it may save a life. Practice it at home. Practice it at work. Practice it every chance you get.

Happy Thanksgiving, and thanks for reading.

Tuesday, September 22, 2015

A Broken Cord: Part 2

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, nothing prepared me for the defeatist drivel I've heard from my fellow SCI survivors in chairs. While many are bravely challenging the limits of their own bodies and accomplishing incredible things, there is a prevailing sentiment that if a doctor says it is so than it must be so. Too many of us nod our heads in assent to whatever en vogue excuse comes down the pike. However, the biggest shock of all, and the motivation behind this series is 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 when there finally is hope of a break through from the research labs of the scientists, so highly dedicated to finding a cure, it is quickly stuck down or rejected by the powers of industry and money because they feel the SCI market will not yield sufficient returns on their investment. 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.

As a community those of us with a spinal cord injury need to get brutally honest with ourselves and admit two very important facts. 1. The medical establishment in this country and ultimately globally is a business, plain and simple, and 2. The big money to be made is in the form of dependent, long-term care, whether it is pain medication, antidepressants, wheelchairs, incontinence products, bandages, nursing care or your daddy's Viagra, keeping you sick is the healthiest thing they can do for business.

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, not everyone, but most do. 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. Now granted, I am not stupid. I know their entire client base is not spinal cord injury, but 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. Coloplast, the European urinary incontinence product giant posted $10 Billion in annual revenue last year.

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

Now, with all of this in mind, I have been pretty direct up to now, but brace yourself for what I am about to say next. If you believe that these so-called "charity organizations" that raise money for research related to spinal cord injury are apolitical and have your best interests at heart, well... you're being naive. We don't need more money to take people in chairs surfing. When you get out of the water you'll be just as paralyzed as you were when you went in.We don’t need more feel good programs or patient guides to living with a SCI. We don’t need gala events for fundraising that cost more money to put on then what is raised to fund more research. What we do need is for these charitable organizations to focus and get something finished before starting another round of new research. If the spinal cord community is going to ever be a community we need to acknowledge that we have been reduced to a dark corner of the world of medical research, forced to grovel for the financial crumbs so desperately needed to fund a real, tangible treatment, with no-one but ourselves to blame.

Am I claiming that these groups who work so hard are corrupt and ill-intended? No! A million times no! Am I saying the work is for naught? Again, no! 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 in today's world of medicine the science of curing suffering has lost its Divine mandate to be its brother's keeper and use every means at its disposal to cure what ails us. Big business and greed, fear of shortage, fear of failure and above all an acceptance of the way things are has created a trickle-down effect that has turned into a river of bullshit that runs from the companies who control modern medicine to the FDA to the biotech Venture Capitalists to the insurance companies to the researchers and doctors to charities until finally it reaches you and I. I'm telling you dear reader, 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 next steps beyond the research, that being 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. Discourage the prestige-seeking and self-serving College and University-based research monolith that has blocked true progress for decades. Yes, they serve a great purpose, but it's high time they SERVE it instead of dictate it.

7. Charity organizations need to reform their policies so that private companies can apply for grants equally or receive a loan or even investment.

8. 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?

Thursday, August 20, 2015

A Broken Cord: Part 1

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.

Monday, July 27, 2015

Crazy Cops, Illegal Marriage and True Love in Brooklyn

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. Tomorrow, the 27th, marks one month from the day the Supreme Court ruled that Same-Sex marriage was legal across the board. However the television and news media has been ablaze with police brutality, racial targeting, wrongful death and more. It seems for every step forward we make as a species we take two steps back. Not only are those who are different terrified of the outside world, those who do not or refuse to understand them feed their own fears by asserting their power and privilege through anger and violence. We should be celebrating, but instead there is much more work ahead of us.

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 her cuddle bitch 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.

Prospect Park is deep in the heart of Brooklyn. It doesn't matter if you are driving or taking the train, it means traffic. I can't take the train for several reasons, the greatest being complete inaccessibility despite the little wheelchair stick men signs plastered everywhere. So we take the car. Getting off of the Belt Parkway the traffic immediately slowed to a crawl. Up ahead could be seen the flashing lights of cop cars and fire trucks as emergency personnel scrambled to block off and redirect traffic. Just beyond this scene was the glaringly obvious reason for the mess, a major water pipe had burst shooting thousands of gallons of water 75-100 feet into the air. This set off a chain reaction clogging the traffic in all directions for several city blocks. It took us forty-five minutes to go three miles.

South Brooklyn is a complex place. A vast grid of narrow one-way streets interconnected by wide thoroughfares. Warehouses and municipal complexes and junkyards crammed up against row houses and tenement high rises. It is one of the toughest places in the world to grow up and live. It's sweltering hot in the summer and freezing in winter. Graffiti everywhere provides the backdrop to car horns, police sirens, garbage trucks, radios and gun shots. It is predominantly African-American, West Indian and Hispanic with a spattering of Asian. While staring out at this congested world so foreign to me I began to think about the people who lived there. What brought them there? What the hell was keeping them there? Most of the African-American contingent came years ago and the Latinos began arriving when Puerto Rico became a U.S. Commonwealth. The Asian community has been growing for years. All of them settled in this urban wasteland in hope, hope for a better life, better wages and the dream of upward mobility. Mobility, now that's a word I can relate to. Ironically, the land of milk and honey they'd be hoping for drew them in and locked its doors behind them daring them to try to get out by any other means than professional basketball or Hip-Hop stardom. Walls made of underfunded education, racial profiling, drug trafficking, exorbitant rent and brutal tax rates create a tangible depression, angst and fatigue you can feel in the air.

I know this feeling. 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? I am asking all of my readers to please read the following article for more information on this topic specifically- Where's The Outrage When Colleges Discriminate Against People with Disabilities

It is a scary feeling to feel trapped. No wonder there are so many guns in those places. Are we really free? Has America just traded one form of slavery for another? I don't believe people are just lazy. Yes, there are lazy people, but what I believe keeps people down more than anything else is hopelessness. A broken body, a broken community is one thing, but a broken spirit can kill a man.

But on to the second part of my story... 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.

I am asking a second favor of my readers. Please read the article below in addition to this month's post. It outlines in great detail the complexity of this marriage issue. At the end of the article is a link to a petition to change these laws. I'm asking all of you to sign it- Some People with Disabilities Are Prevented From Getting Married and here's why

It would seem the land of the free and home of the brave has become a wasteland of broken dreams, but I'm not done with this story...

As I drove home through the city streets of Brooklyn that night I thought about all those human beings behind those lighted windows, I thought about the light that is inside them, I thought about the love that couple had for each other despite what any one else may think. I thought about the amazing music I'd just heard and the power in each one of us to create something out of seemingly nothing. That force, that determination is something that no government program can give and no social worker can take away. It will not fade like graffiti spray paint. No policeman's baton can beat it from you. No college counselor or admissions officer can dim its brilliance or stifle its strength. The only person who can blow it out is YOU.

That's why I believe things can change. 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. Hopelessness and poverty and violence are falling on this country like a cursed black cloud. So many things need to change, but I believe as a man thinks in his heart, so is he. 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 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 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,which 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.

Sunday, June 21, 2015

The Time Machine

Today a friend I've known for many years and went to school with posted a set of photos on every body's favorite social network. As I have already mentioned in one of this year's blogs 2015 marks the 20th anniversary of my high school graduating class. It seems strange because I remember the night in the late 1980s when my parents dropped my brother and I off at the baby sitter's on the way to my father's 20th reunion. Time truly waits for no man.

As I sat looking at that picture that same weird mixture of thoughts, emotions and feelings that always comes up when I see a picture of myself before the injury. It seems that much of my life is often defined that way, the boy before the injury and the man after, and how different they truly are. There I sit, trying to literally convince myself that the boy without a clue in the photo is actually, or ever really was me.

A few years ago I began having a recurring dream, usually about once or twice a week. The dream usually takes on 1 of 2 themes. One, I dream I am literally back in time in my body, in the exact clothes I wore and in the same social situations. The only difference was I have my thirty-something head full of so-called knowledge to make a somewhat more informed decision. Just when I am about to do the right thing in that pivotal, life-changing moment... I wake up. Then there's scenario number two... I dream I am an adult as I am now, and I appear to myself as a young man ready to give the golden key of wisdom that will somehow change my future like some science fiction movie. Funny thing, I wake up before I can warn that young man. It has become so common that even in the deepest sleep I have come, in a flash of lucidity, to recognize the moment I am dreaming. I then hurriedly stammer to get out what I want to say.

Today as I studied that photo I realized it was Father's Day. It makes me wonder what my Dad feels when he sees an old photo of himself. What would he say if he saw that photo of me? What kind of fear, frustration and urgency did he feel in those very real days when I was 13, 14, 15... what kinds of words did he struggle with? I'm sure he had his own dreams for me, not of the past, but for the future. Hopeful dreams. I imagine they paled in comparison to the words he struggled to find when I awoke from the anesthesia knowing I never would walk with my graduating class. What words would stick in his throat when years later in my anger and frustration with my suffering I would lash out at him looking for someone or something to blame and say things I regret till this day. They say a picture is worth a thousand words, but whose words? The photographer? The subject? The viewer? What are those words worth?

I still consider myself a young man. I have been fortunate enough to come to terms with the memories of that young man in that photo. I have been blessed to apply some of the words my father did share with me. Think for yourself. Say what you mean. Look'em in the eye when you talk to them. Don't answer questions that haven't been asked. I am blessed to have reconciled what differences we have had over the years and know my father not just as "Dad", but as my friend. I hope that when he looks back over the past he feels peace knowing that everything turned out alright. I hope he knows that it was not lost on deaf ears and that his acts of love and affection, his love for nature and living things, his passion for music and his desire to live honestly have helped me live through the difficulties of spinal cord injury.

I don't have a time machine, but I'm lucky that I do have more time. More time to do the right thing, do it right and do it because it's it is right. Hopefully if I ever have children I will find the words and actions to help them do the same so that one day, when they look back they will know they did not waste this time here we call life.

So to all the fathers worthy of the title, and most all to you Dad, Happy Father's Day.

Thanks for reading.

Sunday, May 24, 2015

Notes From The ER... This ain't no Greys Anatomy

There are few things that will make you jump like pissing blood will. Anyone reading this who either has a spinal cord injury or intimately knows someone who does knows exactly what I'm talking about. Living with the numbness and nerve damage and paralysis is one thing, the secondary effects are what drive people like us nuts if we're not careful. There is little money thrown at SCI research as it is. By the time the folks racing to find a cure take the lion's share, as they should, those intrepid, dedicated few researching the day-to-day stuff get next to nothing. The trickle-down effect of this lack of research is a raging river of misinformation, disinformation and no information available for the everyday medical professional when they encounter someone with an SCI falling under their care.

Last month I wrote about the lack of preparedness on the part of the medical establishment. Little did I know that three days later I would be in the emergency room with a massive UTI, blood draining from my bladder and a blood pressure reading of 198 over 116. I was living out that very nightmare. Maybe Karma's a bitch and I should have kept my mouth shut or it only strengthened my resolve to shout into the storm that faces those of us trying to keep healthy. I may be pissing into the wind here, but at least I can now say I'm doing it free of infection!

My story goes something like this...

Friday, April 24, 2015:
A hot shower and in bed by 12am. I am a night owl sometimes. I slept most of the night, but awoke in the early morning and noticed strange sensations in my abdomen and lower back. I fell back asleep and woke up the next morning.

Saturday, April 25, 2015, 10:30AM:
I ate a normal breakfast and responded to a few morning emails. Without warning while having a conversation with a family member I began passing blood and lots of it. Within twenty minutes I was in an ambulance on the way to the ER.

Saturday, April 25, 2015, 11:30AM:
I was laying on a gurney in the ER hallway of a local hospital that will go unnamed with a case of Dysreflexic Shock that would make an Elephant miserable. My bladder was having spasms and contractions, it could not empty itself so my blood pressure was through the roof. The pain and throbbing in my neck was excruciating. The only family member there was my mother and knowing how fast things can escalate she had to watch with frustration and amazement as nurses walked past and chatted, filled out paperwork and spoke on the phone like they were running a day spa on the beach at Malibu.

Saturday, April 25, 2015, 11:45AM:
My mother politely informs the nurse of my Dysreflexia and asks, "Do you know what that is?" To which she responds, "Oh yes, it's when the Foley Catheter needs to be removed!" I was not wearing a Foley Catheter. Autonomic Dysreflexia can be caused by a myriad of situations, from a fold in your pants to a blister on the skin and a triage nurse in major hospital in America did not know it.

So went the day. Fortunately we were able speed things along, but for two and a half days I had stay on top of every doctor, nurse and aide to make sure I did not have any other issues. This included adamantly reminding the resident Urologist at least four times that I should NOT, under any circumstances be given blood pressure medication because once the pain was under control my blood pressure would return to normal. If I had blood pressure meds in my system it would have caused a severe drop in pressure causing a reverse effect and possible death! Both the Urologist and the attending Physician had no idea. Holy Hell.

After 48 hours on an antibiotic IV I was much better and they sent me home. Fortunately I am ok. I have a few more tests to check on my kidney health and so forth, but I am certainly relieved to be home and healthy. It simply reinforces my belief that those of us in chairs need to take our health seriously, eat right and exercise so we can prevent these dangerous situations. It is a sad thing that we must protect ourselves from the very system established to protect and heal us, but we can and should.

Speaking of which, in order to improve my systemic function and increase my bone density I am raising money for a very specific campaign. One of the secondary issues arising from no longer bearing weight is a condition called hypercalcemia that leaches calcium from the bones into the blood stream, taxing the kidneys and causing kidney stones. It can be easily prevented with vigorous exercise and weight-bearing. We desperately want to prevent this condition. I need to raise $7,500 for the two machines you see below. One is a standing frame that will allow me to stand every day and regrow bone mass. The second is an accessible weight machine. Combined with my E-stim bike I can do therapy every day in my home and no longer need to travel. This simple solution will go a long way to prevent more ER visits like the one above. If you read this blog, and you get something out of it please consider helping us reach our goal. To donate go to the top left of the page and click "Make A Donation". All donations are through the charity HelpHopeLive and are tax deductible.

Standing Frame
Weight Machine

This Memorial Day weekend marks the beginning of what promises to be a beautiful summer. Help honor the Vets by also supporting a cure for Spinal Cord Injury at The Big Idea. Many veterans suffer physically and emotionally as a result of their sacrifice from this absurd injury.

Much love to all of you and thanks for reading!