Because We CanThrough the month of August, Run Vegan will be used to promote a fundraiser I have initiated on behalf of Family Reach, an organization that helps cancer patients and their families manage finances during treatment. Please visit the DONATE page and contribute to helping me raise $50,000. Follow along as I prepare for and run down the State of Indiana the last week of August. www.stayclassy.org/becausewecanrun
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Today is the 2 year anniversary of the first surgery to get rid of my cancer. It didn’t, of course, but it helped get me to where I am today, while inflicting a considerable amount of damage to my body in the process. I don’t, however, hold a single bit of resentment towards the treatment or where I am at this point physically, because the alternative was much worse. The alternative was a slow, starving death.
On this anniversary, I considered detailing many of the notable things that have happened to me in the past two years, as I experienced incredible highs alongside the more difficult lows. However, it seems more fitting that I give credit to the doctors, the medical industry, and the many people that took the initiative to save my life, while offering my perspective on the many things I’ve learned about the cancer experience, for there are many. I’ve never been the type of person that just lets life happen to them…I want to understand it, as much as I can, and so throughout the past two years I’ve read books that dealt with cancer from varying perspectives, scoured through articles others have sent me, raged against miracle cures offered on the internet, looked for help with diet and lifestyle, and continuously adjusted my perspectives about the cancer experience as a whole. With all that said I’ve come to develop a personal understanding of the cancer experience (by that I mean – diagnosis, treatment, complications, solutions, etc.) and I feel compelled to offer some of what I consider the more important components. Of course, keep in mind, I am not an oncologist, a nutritionist, or a research scientist. I am a continuously learning cancer patient and that is the only “expertise” I can claim.
The point I find I continue to make when discussing cancer is it’s complex nature. I continue to reestablish this fact, because in a culture that craves simplification, the explanations of cancer are always sorely incomplete and the “cures” are all the same. Sometimes we simplify cancer because, pragmatically speaking, it is most effective. A soundbite to secure crucial funding for research or patient support will never address the difficulty of meeting the cancer problem head on. The public wants to believe we are making progress against cancer, that it’s simply a matter of creating the right drug, that cancer is ONE THING and can be fixed with ONE THING. That is plainly, not the truth. Cancer is complexity. As complex as the processes of evolution, always changing, individualized, cancer is the same.
Part of the problem is our terminology. When we say “Cancer”, we simplify it into a being, a repeated element, but it would be more correct (and frightening) if we used the term “Cancering”, as a verb, as a process…because that’s what it is. And a process is often understood as variated, as something that changes, that isn’t the same with every individual. That is how “Cancer” exists. Cancer describes exaggerated cellular reproduction, but that reproduction rarely takes the same form. It exists in different parts of the body, is spread through various bodily systems, is confined in others, and most tellingly…CHANGES AND ADAPTS. Cancer is so difficult to manage because it’s not one thing…it’s cancering…it’s many things. And not only is it many different processes, it’s as varied as the individual it takes place within.
The “cure” for cancering is so elusive because the process responds to the terrain it exists within, that is, every body. Cancering can be more problematic in some individuals because their body is not strong enough to fight back the errant reproduction. Cancering can be halted in others because the terrain is healthy and powerful. Some drugs work to stop and reverse the cancering in certain individuals, but is ineffective in others due to these complex variables that either aid or restrict the cancering. The treatments need to be as individualized as the individual, but how is that ever achieved?
Cancering is so powerful because it is an integral part of systems of complexity. The more we grasp this, the more we can appreciate it’s role, it’s challenge, and our place within it.
Every patient wants to know, “How did I get cancer?” We want to know what ONE thing we did wrong to get cancer, because, we believe, that will help us determine what we need to change in order to stop it and prevent it from coming back. Campaigns to eradicate cancer often attack with the same approach.
Smoking causes cancer. Stop Smoking.
Red meat causes cancer. Stop eating red meat.
Obesity causes cancer. Lose weight.
Inactivity causes cancer. Exercise more.
Again, pragmatically speaking, this is the only approach to which individuals will respond. And yes, you should stop smoking, stop eating red meat, lose weight, exercise more, etc. etc. etc., but again, it’s more complex than that.
The truth is, cancering happens not from ONE thing, but many things. Cancering can be triggered by lifestyle, diet, environment, and genetic make up, but never ONE of those. The process of cancer is a subversion of multiple failsafes, where errant cell reproduction would be stopped by one pathway, it isn’t, and neither the next, nor the next, nor the next, until reproduction spirals out of control. What we struggle to understand is what actions we can take to prevent these failings, because there are so many. Some of these we have come to understand. We know that smoking can trigger cancering, but there need to be a number of other failures that take place before cancer becomes a fatal concern.
And so, ultimately, we can’t pinpoint a cause of cancer…which makes pinpointing the cure just as elusive. We can understand CAUSES of cancer, but then it follows that we need to understand CURES, plural.
In my personal story, I’ve come to understand that I did “everything right” as far as the advice goes for lowering cancer risk…but that didn’t matter. All it means is that I hold no embarrassment for making poor or uninformed lifestyle choices. I’m not saying I’m perfect, but it does go to highlight the complexity of cancer and the need to stop viewing it as a virus, as an infliction caused by one bad behavior. Many people who smoke never get cancer. Many people who exercise do. So where does that leave us? Nowhere good really, but at least it helps us understand the complexity of the process, and can hopefully steer us away from those who try to sell the “cure to cancer” or give the “secret to cancer” or try to fill in the wide gap of confusion and desperation with diets, programs, shaming, and any other misguided attempt to play doctor, guru, or miracle worker.
Sometimes cancering just begins and we need to be ok saying, “we don’t know why”, as we continue to search for more pieces to the puzzle, which we need to also admit may continue to change, adapt, evolve, and remain elusive.
TREATMENT WORKS (HORRIBLY)
There is so much truth to the saying, “If the cancer doesn’t kill you, the treatment will.” This is, obviously, not always true, but it’s also not always false.
With that said, there is considerable backlash against chemotherapy and radiation as a treatment for cancer, primarily because people feel slighted when they watch their loved ones die from what they were told was the only option. The patients themselves begin to wonder if the physical ravages and side effects are worth the treatment at all, and I won’t lie that the thoughts haven’t entered my mind at times as well. What we must continue to remember, however, is how far we’ve come with treatment and that it WORKS…sometimes.
First, let’s address the “sometimes”. We need to continuously remember how complex and evasive cancer is. We don’t have “the cure” or “the cures”, but rather, we have options. We have attempts. We have success stories of killing cancer in individual patients while the same drugs failed to help others with the same kind of cancer. So SOMETIMES the treatment works. Sometimes it reverses the cancering and never returns. And sometimes the treatment doesn’t work. Sometimes it doesn’t reverse the cancering and the patient dies. This means we can’t make a definitive statement either way. We can’t say chemotherapy / radiation always works and we can’t say chemotherapy / radiation never works.
What we can say is, they are the BEST options we have at this point…which, in a way, sucks. I’ll explain a bit further down. Chemotherapy / radiation are the best treatments we have for cancer at this point because the number of success stories we have with cancer are documented and verifiable. We understand how chemotherapy and radiation affect the cancering process because we’ve studied it, researched it, verified it, and have done so again and again. We know the cause and effect of how it all works. And this is what we must continue to rely up on until we find something better or fine tune the treatment to be as effective as possible while retaining the best quality of life for the patient.
But it still sucks. And that’s ok. It sucks because the side effects can be awful, to put it lightly. It sucks because the ravages of the surgeries and treatments can be long-lasting and permanent. My numbed feet can attest to this. Treating cancer is awful…and that’s ok…because it still works and we have countless examples of treatments for other afflictions that suck…but work.
There is a backlash against chemotherapy and radiation by both patient and caregivers that is emotionally based and, if you ask me, unfair. We don’t like seeing our loved ones suffer and so, in the cases where the treatment fails, we hold a resentment against the treatments and doctors and medical industry as a whole. I find this perspective unfair at best and dangerous at its worst. It’s also a matter of relativity. We have no problems with treatments for other afflictions that are unpleasant, but manage through them without issue because we know they help. If an individual swallows something poisonous and the treatment is to immediately induce vomiting…that’s unpleasant, but the alternative is dying of the poison. Other treatments for non-fatal issues involve taking medication that cause nausea, blemishes, rashes, etc., which aren’t pleasant, but guess what…they work…and so we take them. We take the good with the bad.
Cancer is no joke, obviously, so it doesn’t surprise me that the treatment is also no joke. It can suck…horribly…but we’re dealing with CANCER. If the alternative is to do something that causes the patient no discomfort what so ever, I say go for it, but at this moment, that option remains elusive…and any attempt to do so will most likely end in death. So yeah, when it’s suggested that chemotherapy and radiation and surgery are somehow part of a conspiracy or worse than the disease or part of the problem, then I take great insult and have trouble viewing such perspectives as anything less than dangerous.
These treatments are what we have right now and we have few other scientifically verified options with as convincing success rates. They aren’t going to be pleasant, but they work. It’s also important to understand just how far we have come with these treatments. I would never want to go back 50, 25, or even 10 years ago to undergo the same surgery or take the same drugs available then. The side effects used to be so crushing that patients chose to die from the disease than make an attempt with the treatment. This speaks wonders to the medical and scientific communities that continue to find ways to be more effective in treatment and minimize side effects, giving patients a fighting chance.
Cancer treatment today feels horrible, but it works (sometimes…many times), and we need to be ok with that as the research community continues to find more effective treatments and less unpleasant treatments.
IDENTITY & PSEUDOSCIENCE
Cancer is confusing. We know this. There isn’t a doctor out there that will tell you we’ve got it figured out and everything will be ok within 10 years. The problem is, this confusion leaves people grasping and wanting, needing something to fill the space where they wish the answers would lie. But most of us aren’t doctors or research scientists and so we have little to rely on in order to fill that empty space where we wish the treatments and cures were, so we go to what gives us comfort to provide some semblance of answers. The problem is, that comfortable space is dictated by our identities, our sense of self…and not evidence.
I was no different in the past. When I didn’t have answers to life’s questions, I relied on my identity and the pre-fabricated answers to provide them for me. I wanted to believe being vegan and abstaining from drugs would solve all the world’s problems. I, unfortunately, learned otherwise. As I matured, however, I learned to accept that we just don’t know everything..as much as we’d like to. I learned that human curiosity is insatiable and when it can’t find answers to a questions, it will make them up. It comes much easier to explain away our confusion with fabricated answers than it does to simply state, “I don’t know.”…and be ok with that. This manner of explanation is used to explain anything from the origins of life to why bad things happen to good people.
I get it…but I don’t like it. When discussing cancer and it’s corresponding confusion, the need to explain everything is just as strong, and the explanations are often generated through identity, which is both problematic and, again, dangerous. We are dealing with physical processes of the body and we need to keep the focus on those complex processes and not simplistic, magic bullet answers.
I am vegan. I say that because what comes along with that term is the baggage of identity. Vegans, with a capital V, act a certain way, think a certain way, dress a certain way. It is an identity. I am not immune to the pulls of identity, but I’ve consistently tried to break from being A VEGAN and instead be someone who recognizes the injustice of our culture’s treatment towards animals and therefore lives vegan. I don’t eat them, wear them, or use them. Period. I am an individual who is vegan. Just as I am not a runner…I am a person who runs.
Living vegan, however, puts me in contact with many people who do accept the identity of being A VEGAN, and all the baggage that comes with it…the clothes, the interests, the various perspectives..and unfortunately, much of those perspectives are rooted not in science, but in psuedo-science or, what I like to call, “sounds good philosophy”. People tend to make decisions and inform their perspectives not on verifiable evidence, but on what supports their identities.
The vegan identity is one of skepticism, rightfully, and I appreciate that, but it can also go too far. When discussing cancer, the general skepticism towards dominant culture, corporations, and institutions as manipulative and authoritarian becomes seriously problematic when “the baby is thrown out with the bathwater”. Medical institutions, the doctors and nurses, and anyone connected to them are seen as the enemy, so the advice, treatments, and outcomes are all subject to this perception. Everything about hospitals and doctors and treatments becomes a part of this manipulative, evil dominant culture.
I disagree…and I’ll detail this a bit further when discussing the roles and intentions of my personal doctors.
Ultimately, and this applies to identity and not just the vegan identity (I used that as a personal example), there is a formula that develops when we create perceptions about cancer based on personal interests and not science.
First, there is a simple cure to cancer. It’s often either a diet, secret super food/chemical, or way of life, often “discovered” within some remote tribe or ancient people that no one can contact or study.
Second, the FDA is blocking its release. The FDA (an evil institution of dominant culture) is blocking the knowledge of this cure because they are in bed with an equally evil corporation and are protecting their economic interests.
Third, a pharmaceutical company is making a fortune off their drug that doesn’t work. Pharmaceutical companies do make a lot of money off their drugs, but that’s, in part, because they DO work. I won’t belabor this point further as it’s a long drawn out post on it’s own, but the premise that pharmaceutical companies can’t make money off a cancer-free populace is rife with contradictions.
I’ve been offered so many “cures” to my cancer by some well-meaning, but uninformed (and some crappy) people and the one constant that follows these cures is this formula. The “secret cure” is not rooted in anything that is verifiable by the scientific process and has never organically taken off in the cancer community because nothing offered has been able to blanket the complexity of cancer with a simplistic, magic bullet response.
The cancer patient has enough to deal with already and the last thing they need is someone driven by their identity to try and fabricate answers to the great confusion. People facing their mortality are in emotionally desperate circumstances and what they need most is support for THEIR desires, for what they need to feel best about the situation, not any action that is pseudoscientific, not anything that hasn’t been proven to work, not anything that makes the non-patient comfortable simply because the answer fits into their framework of identity.
Don’t get me wrong, I don’t mean to imply there is no worth in an individual experimenting with their treatment, but only if that experimentation is carried out by the individual’s interests and not influenced by exaggerated claims of a “secret cure”. The fact remains, we are confused about effectively responding to the complexity of cancer and so until we figure out how to completely manage the cancering process, alternative treatments should be part of the discussion.
After all, my doctor’s continue to say, “We don’t know what you’re doing, but something’s working…so keep doing it!” Again, the nature of cancer to be specific to itself and specific to the individual means there are many variables that may affect the process, both for the good and bad. This is why when one chemotherapy drug doesn’t work a new one is tried, or when one drug stops working another is added, and it’s why some drugs work in some people and not in others. Those drugs being used, however, have been PROVEN to work through verifiable means.
With that said, I have no problem with an individual adjusting their diet, trying alternatives, or doing anything that won’t interfere with the processes of the drugs they are given. And if they choose to not take chemotherapy or have surgery or go through radiation, and try a different approach, that’s THEIR decision to make. I might personally hang my head and wish them the best of luck, but it’s their decision to make. Without definitive answers that have become the “cures” to cancer, everything is up for grabs.
The problem arises when individuals or organizations profess to have the cure because they had PERSONAL success. There are two problems with this approach. 1. We’ve established that cancer is personalized and so treatments are personalized, therefore, we should always remain extremely reserved in telling other people what will work for THEM just because it worked for US. 2. Whatever alternative treatment a patient undergoes can never be stated as a cure unless that treatment is studied and verified to have been the direct cause in reversing the cancer. If an individual changes their diet and the cancering stops, in no way can we draw the conclusion that the diet is what caused the change. The complexity of variables will always negate the hopeful correlation.
In desperate circumstances, I’m all for the individual deciding they want to try anything to stay alive, but we simply can’t draw definitive correlations without verifiable evidence. It would be irresponsible, dangerous and downright immoral if I were to profess to others that living vegan and running 80 miles a week and drinking 5 cups of coffee a day and eating 3 jars of peanut butter a week and watching 2 hours of netflix a night is what will cure their cancer…but hey, that’s generally what I’m doing right now, so I can write a book, correct?
THE PROFIT MOTIVE
The “cancer industry” (as some like to derisively call it) is often criticized for having a “profit motive”. Well, we live in a capitalist economy. EVERYTHING has a profit motive. The veiled idea is that nothing about the cancer industry can be trusted because it’s not driven by empathic and compassionate people who care for the patients, but rather look at how they can maximize the money going into their wallets by keeping patients sick, by withholding effective treatments, by putting patients through horrendous surgeries because everyone involved will get more and more money.
This is quite an ugly picture to paint of doctors, surgeons, nurses, and medical staff who cancer patients deal with directly. Never once have I looked one of my doctor’s in the eye and saw them staring back with a narrowed gaze, calculating how much money they need from me to install a pool in their backyard. Let’s be real, oncologists are paid very well. None of them are wanting. None of them are struggling. They have an endless supply of new patients and enough money to retire now. They are doing this, in part, because it’s their passion.
And I’m saying this as a staunch anti-capitalist. Yes, “the profit motive” can be corrupting, but as a patient who had his life saved by a surgeon, cared for by nurses, diagnosed by specialists, scanned by expensive machinery, the blanketed blame on the “cancer industry” for ineffective treatments, unsuccessful outcomes, or unpleasant experiences is misguided, unfair and selfish. The “cancer industry” saved my life. The cancer industry allowed me to be here typing this.
What actually surprises me are the individuals stating that the cancer industry is nefarious and heartless, concerned only with making more and more money, are also the ones trying to sell books, advertising on their websites, diet programs, super foods, cures, etc. They are, in effect, working from that exact same profit motive, but under the guise of being “anti-establishment” and with the patient’s interests at heart. Unfortunately, the alternatives they offer are never rooted in legitimate science and only sere to add confusion to the whole experience and not valuable information or advice. They are simply trying to make a profit.
ONCOLOGISTS ARE NOT NUTRITIONISTS
My surgical oncologist saved my life. My medical oncologist followed a protocol based on law of averages in treating me. We are still determining at this point whether chemotherapy was necessary, but at the beginning of treatment, there was no reason to believe otherwise. I was not always happy with my oncologists, especially in my more darker emotional days, but I never believed they didn’t have my interests at heart. I never believed they weren’t concerned with saving my life. And most importantly, I never believed they were perfect and had the answers to everything.
We need to always keep in mind that our society is driven through specialization. We are afforded so much leisure time that we are enabled to discover an interest and, if we want, concentrate on it until we know anything and everything about it, at the expense of knowing more GENERALLY about lots of things.
Podiatrists know feet, but they can’t tell you much about Australian Rules Football. Farmers know the intricacies of crops and yield, but they can’t tell you much about Phrenology. And in these specialized fields are their own intricacies. Podiatrists know feet, but can they tell you a lot about efficient running gait? Farmers know soil composition, but can they tell you about predicting weather patterns? Maybe they both have some knowledge of the corresponding subjects, but that doesn’t mean they can be experts. They are expected to be specialists in their practice and little more.
And yet the skeptics of standard medical treatments want so much more from our doctors. They want them to be doctors, oncologists, therapists, psychologists, nutritionists, etc. Sure, doctors may know a bit about subjects related to the body, mind and health, but we should not expect every doctor to know everything about your health profile. I’ve found that I have to frequently defend the practices of my oncologists and nurses against alternative therapy types who express vile frustration at doctors for not giving them the outcome they hoped for. I’ve watched individuals rail against doctors for not advising them on nutrition. I’ve watched individuals discredit chemotherapy prescriptions because they didn’t also include the coupling of eating certain foods. Essentially, those that rail against the “cancer industry” expect oncologists to be everything from their doctor to their surgeon to their nutritionist, etc. This isn’t fair, nor is this what we should expect from our cancer specialists.
I never expected my oncologist to be anything more than my point person for cancer information and if they gave me any advice on nutrition, I listened, but followed the advice of actual nutritionists for that information. I wouldn’t take cancer advice from a nutritionist and vice versa, but there are those who discredit standard cancer treatments and try to vilify oncologists for not saving their life or the lives of their loved ones, by claiming they are inadequate, that they aren’t holistic. Of course, the preferred approach for these critics is going to a “holistic doctor”, which humorously (or not so humorously), has limited knowledge about and even less power to prescribe life-saving chemotherapy, but instead gives advice on lifestyle and nutrition, which is great, but is also seriously lacking when it comes to actually affecting cancer.
The cancer patient needs to be more pro-active in their role, studying the many approaches to handling treatments through diet, exercise, lifestyle, etc., and not expect an oncologist to be the end all for their personal treatment plan. And no one should be insulting doctors for not being successful in their treatments or trying to present them as money-hungry manipulators, uncaring about their patients, and a cog of the evil corporate cancer industry. It’s one thing to follow your own approach to cancer treatment, but it’s downright wrong to make people distrust oncologists and standard, PROVEN treatments for reasons of personal, individual frustration.
THE COMMON DENOMINATOR OF SUPPORT
The cancer experience is as complex as cancer itself. It is physically challenging, emotionally difficult, often depressing and desperate, and the information available can be overly simplified while at the same time excessive and dizzying. The massive void we wish to be filled with a better understanding of cancering and definitive treatments is instead filled with scientific experimentation, identity based absurdity, pseudoscience, exaggerated claims to secret cures, and a great deal of disappointment. It’s incredibly difficult to wade through and navigate this confusing array of advice and information, but there is one thing that ties together the cancer experience for every patient, and that is the need for support, sometimes emotional, sometimes physical, and sometimes financial.
To be told that the end of your life, which previously lay somewhere in the distance, now has a more definitive timeline is no small thing. Emotional decisions must be made and the individual has serious considerations to weigh in hopes they make the most important and meaningful decisions with the time they have left. Every cancer patient in this position needs the emotional support and confirmation of their decisions, whatever those may be, by the people they choose to include. They need, more than anything, to make decisions on their terms. And even if they make decisions that their loved ones disagree with, they need those decisions supported.
The cancer patient will also need physical support. The ravages of treatment can limit the most simple daily tasks such as turning on the lights, standing up in the morning, or cooking a good meal. The effects of surgeries and treatments can be short term or they can be permanent, but for some period the cancer patient will always need some manner of physical support. If you are in the position of being a caretaker, do not feel afraid to ask what you can do to ease the burden of just getting by.
And finally, the cancer patient will need financial support. As it stands in our country, medical expenses are insanely high. I won’t pretend to know how this all works, why they can be so expensive, whether the value is equal to the charges, or if something more fundamental needs to be changed, but I can attest to the need for financial support as patients go through treatment. We have programs in place that help cover certain costs, whether that is health insurance, Medicaid, food stamps, etc., but there are always significant gaps. The last thing a cancer patient wants to worry about is the burden of keeping their transportation, paying their mortgage or providing for their family while undergoing treatment, but these are very real concerns. Unfortunately, our society often only hears about the debate around health insurance and knows less about the worry patients have to manage when it comes to keeping the lights on and the fridge stocked. As a recipient of generous donations from friends prior to my first surgery, I can directly attest to how important these funds were to my well-being and how they eased my emotional burden, allowing me to navigate the difficulties of cancer without having to struggle in other ways.
This is why I’ve launched the Because We Can campaign, raising $50,000 for Family Reach as a way to directly help patients and their families take care of these other expenses so that they can concentrate on managing cancer first and foremost. In spite of all the confusion, fear, misinformation, lack of understanding, and limited treatments related to cancer, the one constant, the common denominator is the need to support the patient financially. I hope you’ll consider donating to my campaign and spreading the word to others.
I’m glad to have come to a decent understanding about cancer (through the efforts of researchers, scientists, authors, oncologists, etc.), to be able to navigate through the absurdity and misinformation, and to be able to continuously offer something that is a little more practical than I often discover, but I wish I didn’t. I wish I didn’t know about cancer. I wish two years ago I just kept on running and didn’t have my life turned upside down. But we don’t get to choose our circumstances…they just happen to us.
With that said, I’m glad to be alive in order to even develop cancer, and to be alive at a time when medical science has advanced far enough to have a deeper understanding of the cancering process, to be able to execute an incredible surgery that helped saved my life, to be able to receive chemotherapy without the level of side effects that would rather have me choose death, and to have a new timeline of life that doesn’t seem so finite anymore…so that I can help others to my absolute abilities.
Today I ran for an hour and twenty minutes through the woods on local trails, thinking deeply about the value of my life over the past two years, about all the wonderful experiences I’ve had, the generosity of friends and strangers alike, the appreciation to have met Laura and the opportunity to continue parenting my son, and the perspectives that give me grounding and comfort despite a reality that could be relentlessly depressing. Sometimes it’s hard to reconcile that we exist in a time of such incredible confusion and yet such great understanding, but I’m wordlessly grateful to be experiencing it all as we continue on that trail of grounding, of curiosity, of experimentation, and of ceaseless understanding. Someday I hope that brings us to the most effective management of cancer we can possibly obtain, with minimal suffering and maximal honesty.
Friends, let’s not be scared. Let’s be brave.
I briefly met Shaun Evans and his son Shamus after the Adirondacks Ragnar last year and was immediately struck by their story and abilities, which are detailed in the interview below. Shamus is currently pulling his dad through countless miles of training as they prepare to run across the country this summer, in part to raise money for Ainsely’s Angels and promote the value of inclusion. I have tremendous respect for the abilities and spirit of Shamus and Shaun and I hope you find the same inspiration and perspective I’ve gained from their efforts. Look for them on the roads this summer and consider contributing to the work of Ainsley’s Angels.
This summer you’ll be running across the country to promote the organization Ainsley’s Angels and the ideas of “inclusion”. I know your son has Cerebral Palsy and was the initiator of this run. Could you give me some background on Ainsley’s Angels, how you began working with them, and what your goals are for the run?
We were introduced to Ainsley’s Angels when Shamus outgrew his jogging stroller in 2013. I had undergone bilateral hip arthroscopic surgery in 2012 (as well as a sports hernia repair and vasectomy) so Shamus and I had not run together in a long time. When I put him in his old stroller it quickly became evident we could no longer safely run together with that device. However, we did not want to stop running together. He had been running with me his entire life.
I called Dick Hoyt (of Team Hoyt fame). Having been in several marathons with Dick, I knew that he had chairs large enough to accommodate his adult son. He picked up the phone and was happy to speak with me about options. He had said that the chairs he uses to push his son Rick are custom made and very expensive. He said another option would be to “contact this guy in Virginia Beach who goes by the name ‘Rooster'”. He explained that Rooster was the president of Ainsley’s Angels and he helped families to be able to obtain equipment so their children could more fully participate in life. I had never heard of such a group and was thrilled to hear that there were other people out there doing what Shamus and I were doing…rolling with the wind.
I e-mailed Rooster not knowing when I might hear back from him…hoping that I would not have to wait too long so that Shay and I could get rolling again. Less than 5 Minutes after sending the e-mail I had a response outlining a few options on how we could get Shamus a new chair. One of the options was to buy the chair for around $1000, another was to fundraise $800 for Ainsley’s Angels. Once the $800 goal was met, a new running chariot would be shipped to us.
Rooster helped to set up an online fundraising page for us. My wife, Nichole, and I launched the page Saturday morning as we got ready to take Shamus to his adaptive baseball league. In less than 6 hours family, friends and strangers had donated over $1300 for Shamus’ new wheels. A few days later we had Shamus’ chariot and were rolling again.
I then learned a lot more about Ainsley’s Angels and found that they are a rider athlete program that pairs able bodied runners with individuals with limitations that impair their ability to run on their own. I found that they had ambassadors across the USA and were focusing on a movement to promote inclusion and provide the gift of mobility by supplying equipment and some leg power to those who could use it. I knew that this was in line with everything Shamus and I had been doing for his entire life…. educating others about inclusion, and promoting his involvement and participation in anything he wanted to try.
When were you told Shamus had CP and did that change the trajectory of your life? Being told your child has a physical aberration like CP must be devastating as a parent. How did you absorb that information and translate it into the positive actions you are taking today?
When Shamus was born I was practicing exclusively pediatric Physical Therapy. I worked with countless children with neuromuscular impairments. Shamus was born full term and although Nichole had an extremely eventful pregnancy we were assured that his development had not been negatively affected. We were told everything was fine and that we had a health baby boy. Some of the events during Nichole’s pregnancy included placenta previa which resolved itself, an extreme outbreak of chicken pox shortly after we had made a trip to NYC for the 2005 NYC marathon, and a car accident at 35 weeks gestation in which Nichole’s car was totaled when she was t-boned by a 17 year old girl who had just recently received her driver’s license. The car accident sent Nichole into premature labor for about 48 hours. Eventually medication stopped the contractions, an extensive ultrasound of mom and baby were performed and we were told all was fine.
On January 11, 2006 Shamus was born with normal APGAR scores and we brought him home from the hospital as scheduled. However, even in the hospital I started to notice a few things including Shamus having an extreme startle reflex and fisted hands. I knew that kids often out grow these kind of “neurological symptoms” so I kept quite as to not worry anyone. As Shay developed and grew over the next couple of months I knew that he had some neurological impairments. The fisted hands persisted, his startle reflex remained, and I noticed that he had ankle clonus (a reflexive “tremor/spasticity” when the ankle is stretched). I mentioned all of these things to his pediatrician and was told at every visit that he would outgrow it and that I simply “knew too much and was paranoid”.
As Shamus continued to grow it became evident that he was not meeting his motor milestone (sitting, crawling, rolling, etc). However I continued to work with him and we noticed how bright and alert and curious he was. It did not appear that his thought process or mind was in any way impaired. Finally, when Shamus was 11 months old and not able to sit or crawl I convinced the doctor to order an early intervention evaluation and subsequent appointment with a pediatric neurologist. I was not surprised when Shamus was given the diagnosis of spastic diplegic cerebral palsy (affecting his legs). I was almost relieved that I had been right and that it was not some other unknown. I had worked with lots of kids with CP and although I never envisioned my own child with the diagnosis ( I don’t think anyone ever pictures their child having any type of limitations when they are in utero or new borns), I knew kind of what to expect. Shamus was our first child so we gave him all of the love and attention that new parents would give to their first child.
Nichole is certified in special education so kids with special needs were not foreign to either of us. Without ever really talking about it we decided that no mater what, whatever Shamus wanted to do in life we would try to make it happen. We knew that we would have to make accommodations/modifications at times but we wanted him to experience life to its fullest. When he was old enough to sit in his jogging stroller I put him in and off we went for a solid 20 miles. We continued that on a regular basis, and when his brother Simon was born 20 months later (with no physical limitations), we bought a double jogging stroller.
By the time 2013 came around not only had we put thousands of miles on our jogging strollers but despite using a wheelchair as his primary means of mobility, Shamus had ridden horses, bowled, fished, golfed, downhill skied, wrestled, learned to read music and played piano at his preschool graduation, played baseball, soccer, and gone to overnight summer camp where he completed a high ropes course complete with zipline. By then Shamus had done more than anyone ever thought possible and participated in things I had never done (like downhill skiing and I had only been on a horse a couple of times…Shamus was doing both of those things on a weekly basis in each of their respective seasons).
It doesn’t seem like Shamus gives anyone the opportunity to discredit him due to his mobility impairment, but what sort of obstacles does he face (if any) at his young age or what might he face as he gets older? How are you planning to manage such obstacles?
Shamus faces countless obstacles on a daily basis. He attends a public school and we have semi annual meeting with the district to address his needs. There are several things we have been advocating for several years. Sometimes we are able to facilitate a change, sometimes we have not but We are persistent. It is difficult because Shamus attends a small rural school and is one of very few children to ever attend the school who requires a wheel chair.
We’ll start at the beginning of his day and look at obstacles. Due to significant spasticity and tightness in his legs, weakness in his trunk and inability to get himself into sitting or standing positions, he is unable to dress and bathe himself and requires assistance from my wife and I to complete those tasks. We then transfer him to his wheelchair for the day and the bus picks him up in our driveway. The bus is equipped with an elevator lift. He then gets to school and has to have someone walk with him to the front door of the school because he is unable to propel himself over the deteriorating concrete and lack of curb cuts and the front door is not equipped with a handicap access button. He is unable to pull open the heavy doors from his wheelchair.
In addition we have been working to have modifications to Shamus’ chair so he can better manually propel it independently, however, insurance makes such modifications extremely difficult as they are not covered unless precise justification can be provided. We are not in a financial position to get Shamus all of the equipment he needs without insurance.
Once in the school Shamus shares a class room aide with some of his class mates (his classmates have the aide for behavioral issues while Shamus only requires physical assistance with mobility). He requires assistance with transitions throughout the classroom, to the bathroom, and from one piece of equipment to another (standing frame – to maintain weight bearing through his legs, walker – for short distances to facilitate strengthening and motor planning, ball chair- to work on balance, wheelchair- for longer distance mobility, trip trap chair- for lunch time). He then has PT and OT sessions during the day. He is expected to complete all of the class work of other students (which we want but realize it is extremely exhausting for him).
In the past he had been meeting with a school social worker as well to discuss feeling about having a disability and how he copes. However, we felt the social worker wasn’t prepared to work with someone like Shamus…a child who is advanced cognitively but has some significant physical limitations, a child who can communicate verbally and completely understands what is going around him. We opted out of social work and try to keep him involved in activities to develop peer friendships. Recess has been difficult for Shamus. We have been asking for a platform swing so that he can swing at recess. After 4 years of petitioning the school, and with Shamus now in 3rd grade, the swing finally arrived this spring. It has not yet been put up for him to swing in. We send in toys for him to play with other children (Velcro mits, balls, etc) but most kids want to be running around at recess. Often he will read a book or end up playing with a playground aide.
Beyond the physical obstacles he encounters each day I am sure their are emotional obstacles he encounters but he rarely shares them with us, although we always allow both of our children to talk about their days with us as we eat dinner as a family. Every day the recounts of Shamus’s day are glowing reviews of the fun he had at school…always with a smile on his face. I can’t fathom some of the obstacles he encounters every single day…every minute of everyday, relying on assistance for the simplest daily tasks. Yet it is all he has ever known, maybe that is why he is always smiling (though he sees his brother and classmates are able to do things for themselves), and I know he wants to do things for himself…he is simply patient, persistent and forever positive…I want those traits to last, and I try to learn from him every day.
Shamus seems to really guide your actions with the runs and training. Have you been able to keep up to his coaching demands?
Shamus is the best (and only) coach I have ever had in my adult life. Prior to Shamus guiding my training I had been my own coach basing my training on experience and LOTS of reading. Shamus simply based his training for me on what he thought I was capable of. He knew that I could run 20 miles, so why not be able to do it every day. I simplified my thought process and obliged Shamus in each of his requests as much as my body would allow. To my amazement my body was capable of things I had not thought possible.
Shamus was never told something was impossible so he simply believed. His belief in me was enough to propel me to back to back to back to back to back training weeks in excess of 200 miles with no ill effect on my body. In 2014, thanks to Shamus’ simple training mantra “Run far…if you don’t have time to run far, run FAST”, I won multiple ultramarathons and Shamus and I have won ultramarathons TOGETHER. That’s right, at the age of 7, Shamus became an ultramarathon CHAMPION, AND he had to pull me along behind him!
The dream to run across America was his and without him it would not be possible. He supplies the inspiration, the motivation, and the never ending positive attitude and infectious smile…all I have to do is supply the legs, and with him leading the charge, that’s easy!
This idea to run across the country…what do you think put the idea in Shamus’s head? How is this run going to be conducted and how have you been training for such an endeavor?
Shamus came up with the idea to run across the USA after he had seen a boy “cartwheel across America” on the Disney channel (photos of the boy cartwheeling in different states and with various landmarks across the USA were put into a slideshow during a segment between cartoons). Shamus and I then ran an ultramarathon together (my first ultra and only our 2nd race together). He asked if he could run it with me and since it was a closed course, timed event (6 hour race on a .356 mile loop around a park), I obliged figuring he could run a few laps with me and would then get bored. I figured he could then cheer me on and be race support with my wife. I cleared it all with the race director and we were off and running. I checked in with him periodically during the race and he wanted to keep running. After about 4.5 hours we were still cruising together and my wife made him take a bathroom and lunch break. While he took the break, he insisted I keep running and I obliged. 20 minutes later he was back running with me and at the conclusion of 6 hours we ran over 45 miles which was enough to win the race!
When we got in the car and headed home he asked “How far could we go if we ran that far EVERY day for school vacation?” He had just finished 1st grade so Nichole and I helped him with the calculations and determined we could run over 3000 miles. His next questions was “how far could we go if we ran 3000 miles?” We told him that we could all the way from one side of the country to the other. He liked the sound of that, and that became his mission, to run across the USA just like the little boy that “cartwheeled across America”.
Although Nichole and I thought he would forget about this dream, Shamus (per his personality) persisted with the idea asking us about it on a daily basis. Around Thanksgiving of 2013, 3-4 months after our race he was still asking “when are we going to run across America?” and that night he said “Dad when we run across the USA let’s give chairs to other kids like me so they can feel what it is like to run”. At that point we put the plan into motion.
With Shamus wanting to pay it forward I met with my boss and asked for the summer of 2015 off from work. Having met Shamus on several occasions she was extremely supportive. Now for nearly 2 years Ainsley’s Angels Power to Push has been our family’s focus. We have been fundraising, spreading the mission of inclusion and training hard in preparation for our epic journey. Training has consisted of building up tolerance to LOTS of miles. This summer I will be running nearly 350 miles per week (many of those miles with Shamus) so I have built up to running a minimum of 20 miles per day and running miles with Shamus whenever weather and his schedule permits.
This summer Nichole and Simon will act as support crew with an RV loaded with our daily needs. They will be our mobile aide station. In addition they will be towing a trailer loaded with the chairs that we will be donating along the way. In each state we will present a chair to a family that Ainsley’s Angels is helping us to find. We hope to find individuals to support us along the way with some of the day to day needs and errands and will have immediate family as well as Ainsley’s Angels family meeting us along the way.
I know adversity can really change one’s perspective or offer life learning experiences. What would you say has been your greatest perspective shift as Shamus’s dad?
With Shamus having to overcome physical limitations I think I have truly found the power of belief in one’s self, and the strength that can be gained by simply staying positive when everything else in the world seems to be saying “Why bother”. Shamus has shown me the importance of smiling, pushing forward, never giving up, believing, dream BIG, and knowing that anything is possible.
If you had a global audience, what would be the most crucial aspects of living with mobility impairment and inclusion you would want to convey?
The most important aspect of inclusion we are trying to convey through our mission and journey is that there is no reason individuals with limitations of any type need to sit on the sidelines and watch. They can be fully involved in whatever they want to attempt. Modifications, equipment, and accommodations can be made and there are lots of people willing to help, individuals simply need to know that programs like AInsley’s Angels (and many others) exist. While we spread the vision of inclusion we will actually be providing the gift of mobility by donating equipment to make participation an option.
How can those of us not directly affected by mobility impairment support others managing and thriving through their struggles?
To get involved you can financially support programs like Ainsley’s Angels or get directly involved by applying to be an ambassador. The power to push project has been developed as national outreach. We are always seeking local, and state ambassadors for Ainsley’s Angels to promote involvement and inclusion in their areas. Selected ambassadors receive start up kits including 3 running chairs and lots of AInsley’s angels gear in order to get local children involved in fun runs, road races, bike rides, triathlons, etc. Find out more by visiting the website at www.ainsleysangels.org and click on “Be an Angel”.
What are your hopes for Shamus’s future? And are you scared that when you finish this run, he’s going to set an even bigger physical goal for the two of you?!
I know that Shamus is just beginning to encounter obstacles in his life. For the most part Nichole and I, another family member, or a school aide is always there for him if he needs anything. My goal is for Shamus to live as independently as possible as an adult. However, I try not to focus on the future too much. There are often gains in the medical field and there may be developments that are life altering for individuals with cerebral palsy. For now, we try to take on each obstacle as it presents itself. IT is actually a good metaphor for the way we will tackle our transcontinental run this summer. I don’t want to get overwhelmed by thinking of running 3200+ miles or even 50 miles each day. We will take one mile, one step at a time and work through difficulties as they arise. With Shamus leading the way I know we will succeed. As far as what is next, Shamus is already talking about competing in an Iron Man and then “running around the world” :) Dream Big! ANYTHING is possible :)
The discussions I have in my head while running seem to always circle back to this “window of opportunity”, of which I’m calling this period between my last surgery and the next, where I’m currently not on chemo and the ravages of such a treatment aren’t building up and holding me back. When the fatigue of the miles build up and my motivation momentarily wanes, I keep sight of this “window of opportunity”, reminding myself why I am out here running…because I can be out here running, and likely, there will again come a time when I can’t be out here running.
And so I am compelled to make the most of this window of opportunity, to run and keep running, to continue building the most rewarding life I can manage, to build…something great. I toy with the idea of “creating heaven right now”, but that feels more an insult than a motivation. There is no heaven (or hell for that matter), just the “utopia” and “ideal” we create in our minds, taken to it’s extreme. We should instead, recognize what we have in the moment and not delay any satisfaction, not hold off any reward, not wait out our days until…something else. We don’t even need to “create heaven now”, but just recognize the good life can live within the means we’ve got…and do it. In many ways, I’m trying to do that in this window of opportunity.
But this is not just about me. From the known beginnings of human existence, we have lived amongst others, as communities, as social creatures, thriving in a variety of relationships. The parameters of those “communities” and relationships have exploded into confusing, overlapping, separating forms through civilization’s dictates, but the base desire for sharing remains. We can’t shed our survival instincts as quickly as we lost our tribalism.
When I run now, it is not just about me. When I run now, it’s not only about others either. When I run now, it’s about creating the most rewarding existence by seeking some form of community, of fostering mutual aid, of being both selfish and selfless.
We have at our fingertips, the option to live in so many ways, isolated, communal, or a mixture of the two…but what best serves our interests? And what are our interests? In Western culture it is hard to ignore that we are compelled to be “self-made individuals”, independent, and isolated. We hold high regard for those who hoard, accumulate massive riches, find themselves on the top of the hierarchy of business, politics, authority, all the while told we should be striving for the same. We are compelled towards selfishness, or at least a selfishness that has been exaggerated out of control.
I appreciate selfishness. I appreciate a life with the individual at the center, the decisions driven by survival instinct, the preservation of the self. I see no harm (or alternative) in acknowledging the survival instincts coded into our genes, but it is short-sighted to believe this is our only purpose, to survive, or that our survival is not benefitted from cooperative relationships with others.
The lives we live today should be informed by selfishness, but only to an extent that we take care of ourselves first…so we can be capable of taking care of others. When I run, it is a selfish act. I run for my benefit, for my experience, for my reward. And the way I live my life is the same, to a point. In my younger days, I lived much more selfishly, trying to take care of myself before ever considering about the possibility of taking care of others. In maturity though, I realized that degree of selfishness left me wanting, lonely, unfulfilled.
Our other option is to live selflessly, of which we are, again, enabled to do so to such exaggerated levels. We have compulsions and institutions enabling us to not just live selflessly, but to sacrifice, to lose sight of ourselves in the interests of others. We are often told to uphold selflessness to a sacred level of attainment, something to aspire, a state that derides the ego of selfishness. Selflessness is posed as enlightenment. I disagree.
Ultimate selflessness IS sacrifice, it is deprivation, it is a denial of our base desires and survival instincts for an exaggerated sense of righteousness, but it’s not a rewarding existence. We have countless examples of individuals compelled to attain complete selflessness, in service of others, from hermit-like monks, to everyday charity workers who grow increasingly frustrated, bored, and unfulfilled as they put aside personal interest for the interest of others, chasing the promise of a selflessness that is meant to be supremely rewarding, but always remains elusive.
What if there was another way to live though, that measured the two ideals against each other, that accepted the joy of selfishness with the reward of selflessness? I think, when we accept the value of both characteristics, the examples are all around us. I think, when we really evaluate our actions, we can’t deny that all we do is for ourselves…and others at the same time. We are driven by our survival instincts, to take care of ourselves, so we can give to others, and get in return.
My running, at this point, is about this mutual exchange. I have initiated this fundraising campaign for Family Reach because I have a window of opportunity, to give to others. I have the capability to live for others, but not at the expense of my happiness. Running is my daily excitement and joy, and the idea of running down the state is selfishly rewarding. It sounds awesome, exciting, and joyful. I would never deny that. It will be hard and there will be some degree of suffering, but it will never be a sacrifice. I will enjoy it. All the same, I will be doing this to give funds to an organization that will benefit individual cancer patients, offering them a sense of calm and support. I will be doing this through the generous donations of you as individuals, along with businesses and other institutions.
And in that I’m balancing the selfish and selflessness that create the most rewarding life I can live in this window of opportunity. This is my effort though. In some way, we are all capable. We can all carve out ways to live for our own interests, first and foremost, but to then figure out how to live for others all the same. Imagine a cultural dictate that did not follow the laws of a selfish economy, that compelled the individual to live a deeply rewarding life that enabled them to pursue their interests, while simultaneously serving others. I will stop at giving examples, but our capabilities are seemingly endless.
In this moment, my desire to run benefits my health, fills each day with a dose of excitement, satisfaction and experience, but also compels me to build this fundraising campaign, to prepare for my Ultra Run in August, and to feel rewarded by knowing I’m helping to make the burdens of others significantly lessened in the process. I’m bringing friends and strangers along with me, offering the opportunity for them to help with a small contribution, a tiny moment out of their day.
But ultimately, I want to compel every friend and stranger who reads my words, hears me speak, and follows along, to find a way to build their own life in similar ways, to be selfish for the sake of selflessness, to engage with a larger community…to simply be better, to do good.
We all have a window of opportunity, whether it’s moments within our lives, or simply our lives themselves…let’s make the most of it.
“If you want happiness for a lifetime, help other people.” – Derek
I live in Indiana and the Because We Can run will take place down the entire length of this State. You probably don’t hear much about Indiana unless something sports-ing is going on or a whole bunch of drivers are all turning left at the same time, but we were very much in the news lately…for all the wrong reasons. You probably heard more about Indiana this last week than you ever wanted to hear. So did we.
Unfortunately, some of the bigotry that comprises isolated, often rural, communities made itself known in national news. The backlash was swift, but the backlash to the backlash was even swifter. After the pizza restaurant temporarily closed their doors (probably regretting saying what they did), right wing pundit, Glenn Beck, stepped in and facilitated a donation campaign to this pizza restaurant, showing support for their bigotry and trying to convince them to re-open. This donation campaign, facilitated by selfish anger and internet enabled mass media, brought in over 842 thousand dollars in just over a week.
This turned out to be the second largest fundraising effort in the history of GoFundMe, accumulating more funds for this pizza shop than raised for cancer patients, victims of the bombings during the Boston Marathon, and many other causes for individuals in legitimate need. LEGITIMATE need.
I don’t want to spend too much time on the bigotry of these owners and how specific social dynamics came together to warrant this response, but rather to use this circumstance to point something out.
Many people have disposable income.
Much of this disposable income is needed for various financial responsibilities, whether immediate or in the future, but still, we often have enough to spend on recreation, impulse purchases, or emotionally charged fundraising campaigns. And that’s great…that we live in a culture of excess that affords many of us this luxury…but often this luxury is taken for granted, without consideration or appreciation.
I, for most of my life, have been no different.
I’ve almost always lived under poverty guidelines, but that didn’t mean I was struggling. I could still purchase items that I didn’t need or spend money that wasn’t necessary, without too much trouble down the line. But my current health situation really struck me as a wakeup call, not only sending me into a chasm of financial absurdity, but appreciating the support that has been offered as I’ve worked to keep my pre-cancer life intact. Many don’t have this luxury.
I was aided through various benefits held by friends after my surgery, allowing me to pay my mortgage, provide for my son, put good food in the fridge, and take care of all the financial issues that could have added additional stress to my already stressful situation. I will, unfortunately, never be able to repay the many people who contributed to my benefits, nor will I ever be able to sufficiently express how important those funds were.
What did happen, however, is that I developed not only an appreciation for the support I was given, but became inspired to return the favor as best I could. Sometimes it was through donating finances directly to the causes of my friends, while other times it was conducting my own fundraisers for important organizations. Speaking selfishly…I was caught off guard by how great it felt to be a part of this type of action. It felt good knowing that I was in a position to give a few dollars to a friend who really needed help, and it felt GREAT knowing that I could convince others to raise significant money for larger organizations that aided many, many individuals. I felt like…something deeper, more rewarding turned on in me.
I felt as if I was no longer taking my first-world financial luxury for granted (even when I have none of it), but began considering the impact I could have on others and how each dollar or each able-bodied opportunity could help.
I don’t know to explain it better than the quote I supplied by Derek at the top of this post…that helping others, directly, and tangibly, brings great happiness. Helping others passionately, has turned something on inside me, has given me a great sense of comfort and reward, and added another degree of depth and passion to my life. It has also shown me what is truly important in life, in what brings an unshakeable satisfaction with my days.
It’s not that I haven’t tried to help in the past…but it has always seem to have been momentary, on the fringes of my normal activity, and maybe, just not measurable. My sense of action has often been through activism, pushing for social change, which I still greatly admire and respect, but often left me grasping, unaware of the effect I was actually having. It was also driven by a hatred for injustice and not so much a joy and care for others….which I think is just fine. Still, this new experience I’m having with aiding others is different, maybe more mature, definitely more rewarding. It feels more central to my life than just a fleeting, feel-good action.
I don’t mean to pat myself on the back here, as if to say, “Hey! Check me out..I’m awesome!” Not at all. I just feel inspired, to not only continue this new experience, but to share and show others just how great it can be, to really step outside of yourself and engage with others in legitimate need, and aid them.
But not in the Memories Pizza kind of way. Oh hell no. That’s not about helping others…that’s about making a statement against homosexuality, about putting your money where your fear and small mindedness is.
No, I’m talking about the potential we all have, sometimes temporary and sometimes consistent, to constantly aid and support each other, whether that is directly through friends and family or on a larger, less personal scale through organizations doing the same work with more resources. And I think that is what has struck me most about what I’ve learned through my own cancer experience, that we, as capable humans, have so much potential we are wasting.
We have so much potential to be greater, but we’ve been restricted by so many behaviors and legitimate obstacles that it becomes increasingly harder to see through the blinders and change our lives. And that’s absurd…and sad…because there is so much each one of us can do to be genuinely better people, to stop being workers and bosses and abusers and users, but to become caring individuals who reward others and are rewarded in return.
Speaking financially, we have the ability to look at every dollar and figure out how to maximize it, how to stop thinking about what we WANT in the moment and start thinking about what others may NEED. But I’m not going to tell you, “Don’t buy that latte every week and give to someone else,” because I know that’s not how we are hard-wired (plus…it’s coffee), but rather to say, “If you have the ability to buy yourself a latte through the week, then you also have the ability to aid someone else as well.” Again, it could be a friend recently diagnosed with an illness. It could be someone who lost their belongings in a fire, suffered a financial blow in a car wreck, has a sick child, etc. Or it could be a cause you are drawn to and an organization that has the means to effect change for the good.
I may sound like an plea commercial here, but I’m ok with that. It’s still important to say all this. Because this isn’t just about helping others, it’s about helping ourselves individually, by feeling good about ourselves, by using our abilities to help others, and experiencing what that sort of reward is like. I know, as I have offered help in the past, and am now in the middle of this fundraiser…that it feels damn good. I simply want to share that feeling, to convince any readers of this post to be the type of people, and communities, and default behavior, that thinks of other beings to the same degree they think themselves.
It bears repeating…”If you want happiness for a lifetime, help other people.” (“people” being all sentient creatures)
I was having something of an identity crisis this morning, or truthfully, I’ve been having this perceived crisis for the past month or so. In short, I just don’t know what sort of runner I want to be in this moment, or what sort of runner I CAN be in this moment.
The workout I had on my schedule was a pretty simple, mere 5 mile progression run. This is a workout I’ve done many, many times in the past and really enjoy, the relatively easy start with an increase of intensity throughout, both physical and mental, before letting loose all the way through the effort. I knew today, however, that experience wasn’t going to be so easy…or achievable at all. My running is a mess right now. As I’ve whined about in the past, I have no range with my efforts, and so trying to adhere to this prescribed workout would be next to impossible and probably have me flailing by the third mile. I won’t go into that any further. The point is, I wasn’t looking forward to the workout…and that’s no ok. Nor is that the standard. I love running and I love pushing myself and I love workouts, no matter how hard…that’s the appeal, but lately I’ve not been able to build that excitement because I haven’t been working against my psyche, but rather my body. The psyche I can fix, the body is more static. And so I would attempt each workout, but the excessive suffering, right off the bat, have left me dejected. Even when I finish the workouts, the joy of an accomplished effort remains elusive. Something has been wrong.
I dropped Laura off at work this morning and then started driving to my normal workout location, but with the dread hanging over me like a threatening rain cloud, matching the ones in the sky, I decided to head to a different location for a change of pace and bit of newness. When I arrived at the parking lot though, the excitement hadn’t built and the rain clouds opened up on me, outside and in. I debated doing the workout later in the day. I debated skipping today’s run all together, which would have been the first since November. I debated doing the workout on the treadmill…and started driving back downtown to do just that. Not a few blocks in though, I thought to myself, “Wait…what about a trail run? What about going ‘off schedule’, scrapping the workout, and just putting in a good effort in the woods?” and immediately that sounded great, but no sooner had I considered that, the other voice came into my head, “You’re going to skip the workout completely? Why? Are you scared? Are you just ducking the effort?” and I kept driving towards the treadmill.
I debated that question. Was I just ducking the effort? Was I just scared of failing? Or am I trying to be a runner I just can be at this moment? I drove another block before abruptly making a turn East and heading…to the trailhead.
It was clear to me in that moment, I needed to run the trails, without the workout. I NEEDED to do that, because that was what I was most compelled to do in the moment…not to give up, not to duck an effort, but to actually enjoy my run, because I’ve been missing that so much lately. I’ve been pushing and pushing and pushing and getting almost nowhere. And that’s a problem.
It’s a problem that my body is still so affected by the surgery/chemo/cancer that I can’t find the progressions I’m looking for, but even worse, the combinations are not allowing me to ENJOY the experience of running. That is undeniably not ok. I run and compete because I love to do so, I love the effort, I love the struggle, I love the progression, but above all else, I love the experience…physical and emotional. I seem to be lacking both right now. And it is that foundational emotional experience that lies beneath everything else on top, all the races, all the workouts, all the struggles and success. But I haven’t been feeling much of any of that lately. It’s been bugging me for quite some time, but I needed just that, time, to figure it out, to see if that would change, to see if I was just “in a moment.” Today showed me that I wasn’t just in a moment. I needed a change…have needed a different relationship with my running, for the time being, for quite some time now.
Or else you could say, I just bit off more than I could chew after this last surgery. I talked about the “window of opportunity” and making the most of it…which I’m still doing and still plan to do, but these competitive aspirations are just too much right now. I’m NOT ready for that. I’m ready to get back to where I was, to simplify, to enjoy the experience while I push for more personal goals.
But back to that identity crisis. I took the turn East and started driving to the trailhead, as if a weight had been lifted from me emotionally and physically. I was immediately excited to run, to get back to the woods where I feel most comfortable. But I wanted to be sure I wasn’t just “in the moment”. I started thinking about all the runners I COULD be or WANTED to be in the moment.
I COULD be the runner on the path struggling hard to finish the progression run. I could be that runner on the treadmill doing the same with all the comforts the gym brings. I could be the runner that scrapped everything and decided to just “do the mileage”. I could even be the runner who stayed in bed this morning and said…screw it. But in the moment, I was the runner heading to the trails. And that’s the most important dynamic to recognize, that we have all these runners inside of us each morning we get up to run. We can CHOOSE to be any of them, and there are struggles, accomplishments, concerns, and validations in every one, but ultimately, in the end….we need to decide which one will bring us the most joy, the most excitement, the most intensity. We need to decide which one will bring us the most joy in both the moment and when we reach the finish.
Today, I decided I needed to be the runner that was in the woods, working hard up the hills, letting momentum carrying downwards, twisting, turning and dancing around the snaking dirt, and just being enveloped by the forest like a womb. I knew, without a doubt, that I needed to enjoy the run and nothing would make me happier than being in the forest…being THAT runner.
And so I did…and I was right. I finished the run tired, worked, accomplished, and excited. I thought about all the other runners I could have been today, and I didn’t envy them. I didn’t feel as if I missed out on a greater experience. Quite contrary, I think they envied me.
I realized many things on the run today – that I need to shift my relationship with running at this moment, that I need to be more intuitive and self-guided with my training, that I need to incorporate more of my notions of “soul running”, that I need to give my body and mind more space between surgery and chemo before I make a complete go at competitive running – the most important being that I need to always put the joy and intensity of my running experience before my perceived ambitions. I feel, above all else, that I got back to my real running self today. And it felt great.
With all that said, I’m not writing off entering running competitions, but only doing so when I feel ready and inspired…and I’m not writing off training, but just doing it more intuitively, self-guided, and more in concert with how my body adapts in relation to past damage (surgery/chemo/cancer), and I’m more inspired to push myself, transition and adapt, work towards my ultra run fundraiser in August…and enjoy the experience along the way.
1:25:00 of trails
Special magic oatmeal
Granola with chocolate chips
Toast with avocado dip
It’s early…more to come
Reign Supreme – All the albums…I can’t stop.