I am writing this to create a clearer picture of who I am, and my struggles with chronic pain since a surfing injury damaged my spine in Santa Cruz, California. I am also coming out to the Buddhist community as someone who has suffered from chronic pain for 25 years, and currently has an Intrathecal Pump. This pump pushes a small amount of opioids into the space around my spinal cord, called the intrathecal space. It has also aided greatly in the quality of my life. I have now been married for 23 years, I have two grown children, I am the abbot of a small temple, and I was recently recognized as a teacher. My medical care, as well as my Zen Practice, have been vital in giving me the strength to march on through times of trial and tribulation.
I grew up in California, and would often take trips to Santa Cruz. One day I was surfing, when a rogue wave bent me in the wrong direction on the sea floor. If anyone reading this surfs, they understand how much force waves truly have. It knocked the wind out of me, and immediately I felt severe pain in my lower back; it was like nothing I had ever felt as a 14 year old. Luckily I had a dry suit on, and it helped me float to shore. I remember clearly the fear of not being able to swim, luckily the waves aided in getting me back to shore. I laid on the beach in denial, trying to deal with the pain. After a week or so, the pain subsided, and I forgot all about it. Approximately six years later, I decided to join a gym. I studied under a power lifter who worked with the local youth in Allentown. One day, soon after I started, I bent down to grab a bar off the floor (45 pounds), when I was racked with pain in my lower back. I could not straighten up, and I limped out to my car. I remember that vividly, as I knew something was not right. It took me a month or so to heal. Everything went fine for about another two years, until it happened again. I bent over to grab my car keys, and when I tried to straighten back up, I fell to the ground in pain. I made my way into my work, however, I collapsed soon after. I told my frantic co-manager to call an ambulance, I knew something was really wrong. I end up being admitted in the hospital for a week. I am still in pain months later, so I start going to: chiropractors, herbalists, physical therapists, acupressure, and healing touch practitioners, nothing is working. At this time in my life, I have my own business, I am married, have a house, two young kids, I am enrolled in continuing education, and I had everything a guy could ever want. After the failure of all of those alternative approaches, I moved to western medicine. I ended up going to a neurosurgeon who did various tests on my spine, they come back, I have severe facet/disc disease from L-2 to S-1. In return, at 26, I underwent a multiple level fusion with pedicle screws and rods. This totally rids me of the shooting pain, and the instability in my back. I go back to work after a few months of rehab, however, I start feeling a new sensation. It feels as though my foot is on fire, literally. My foot begins to turn red, it swells up and it starts to feel as though the skin is being burned off by a blowtorch. After a couple of months of this, I am referred to a pain management doctor, as there is nothing more the surgeon can do. My pain management doctor looks at my foot and says “I think I know what this is, I think it is RSD”. He takes pictures, does several blocks, as well as other tests to check for sympathetic changes in my leg, and soon confirms it is – RSD. RSD is considered more painful than terminal cancer pain. It is one of the worst nerve diseases you can acquire. It seems the damage in my lumber spine had damaged the sympathetic nerves into my leg. These are the nerves that control sensation (pain) and circulation. My nerves are now lying to my brain. They are now telling my brain my foot is on fire; my nerves are malfunctioning. We try injections, anti-inflammatorys, anti seizure medication, antidepressants, and when they fail, fentanyl patches. I hated the way fentanyl made me feel, I felt stoned all the time. In return, my doctor told me about something new. It was called an intrathecal pump. He said the IT pump deliverers medication only the affected area of the spine, and it only uses 1/300th of the oral dose. So no stoned feeling; I said, “sign me up”! I remember the trial was exciting. When they injected the morphine into my IT space, the pain almost totally went away, it was a miracle. I went through the normal vetting process, MMPI, counseling, substance abuse education, and finally the permanent implant. The implant changed my life, it was as though I was given another chance. Soon after, I worked once again, was ordained as zen monk, raised my children, started a temple, and found gratitude and love for life once again
Lets move ahead 12 years on my timeline, the next incident occurs. After being in and out of the hospital 8 times, over a two year period, I was rushed into emergency surgery for severe thoracic stenosis; I had cauda equana. This is one of the most pressing neurological emergencies, and it can lead to permanent paralysis. Due to the severity of the stenosis, laser surgery was not an option, and I was given a new seven inch scar. This is par for the course for people who have long term multilevel fusions. The rest of the spine wears faster, and it becomes a cascading effect that damages the whole spine. Currently I only have five levels that are not damaged or diseased. The pump still works on the RSD, and lumbar pain, however, it struggles to compensate for the stenosis induced leg myotonia.
Over the years I have watched pain management go from extremely liberal opioid policies , to the current fear of prescribing anything opioid. Things really started to change about eight years ago when the issue of opioid overuse really came to light. Doctors started changing, and mine began educating his patients on the responsible use of pain medication. It became “Use less, and be wiser about that use”. This meant, no more increasing amounts but, the better use of what you have. I personally experienced these changes and learned a different way of approaching opioid use. I think doctors and patients learned together how to reduce the amount prescribed. This has been changing for some time, however, granted, not everyone has changed with the times. Certain doctors continue to follow the old opioid philosophy and have damaged their communities. The truth is the damage has been done. Those addicts who found their way into pain clinics are now being cut off. They are resorting to heroin and other drugs. This is also not to say there are not true chronic pain patients out there who were cut off, and have now turned to heroin for pain management, they are out there too. However, research shows this is an extremely low percentage of chronic pain patients. Research also shows that the percentage of pain patients who become addicts is also very low, studies suggest 2%-7%. Addiction and dependence are also two different things. Anyone who takes an opioid for an extended period of time, will become dependent. This means if that person stops taking the medication, they will go through withdrawal. Addiction is when the pain is truly suffering, and the medication is used to escape that suffering. Sometimes the two are interconnected, which really complicates the issue. I said the damage is done, yes it is, and now the chickens come home to roost. The addicts have been discharged, and must find their fix in the streets. This leads to an increase in the demand for drugs like heroin and black-market fentanyl. Truth be told, the diverted legal prescriptions are a small part of the opioids found on the streets. Mostly these drugs now come from Mexico and China. Do a search for “Buy Fentanyl” online, and you will find a menu of places oversees willing to send it right to your door. Yes, it is that easy to get black market opioids 50x stronger than heroin. Much easier than trying to convince your doctor you need a few Vicodin. Since the chickens have come home, there is a public outcry for action. Instead of explaining this crises will take some time to deal with, they are gas lighting the public and telling them this issue is being caused by the pain doctors. Once again, not that they are not out there, they are just much fewer than the government is leading you to believe. What an easy scapegoat! Now all doctors who prescribe opioids are dealers, and all chronic pain patients are addicts. The crusade begins, another war, the war on opioids! Politicians are now clamoring to demonstrate they are tough on drugs, especially in NJ. These politicians are not taking a balanced or an informed approach when creating these new drug initiatives, they are being reactive, and they are promoting hysteria. In reality, they are harassing, cherry picking, and closing down legitimate pain clinics. They are disregarding the damage that is being done to the men and women who suffer from chronic pain. They are deeming pain patient as addicts by lumping them in the same category as black market opioids users. The FDA has refused to weigh research that was contradictory to their agenda, and did not invite the testimonies of pain management doctors, nor their patients, when forming many of these new opioid initiatives.
Many people will say, “well I have back pain, and I just take a couple of Motrin”. Well, this is akin to saying that all back pain is the same, or better yet, all pain is the same. Is childbirth like a pulled muscle, or is a tooth ache like cancer pain? Moreover, people have various genetics which make some great at dealing with severe pain, while others not so much so, this is chemistry, not willpower. Acute pain is easier to get through, you are still strong, and you know it is not forever. Maybe we have kidney stones, break our arm, have knee issues, these are not the same as chronic pain. Imagine your acute severe pain lasting days, weeks, months or years. You cant sleep, you cant work, your energy is all wasted on compensating for the pain, your demeaner begins to change, and then it robs you of all your joy and love. You become a shell of what you were. Your world becomes small, and soon there is just the pain and you, as you lose everything. Am I exaggerating? I am not, I have been through it. I am just lucky to have found a good pain management doctor early, and have a loving wife. Many of my peers have not been so lucky.
When I decided to make my story public, I knew I may be labeled, and abandoned by some of my friends and student. How can a zen monk not control severe pain? Well, I am one of them, and the human mind and body can defy only so much pain. I am certainly skilled with going through suffering! One thing I have learned a great deal about in my zen practice, is me. For a long time I had issue with the stares and sneers the other monks and nuns gave me as I sat in a sway back chair during session. I felt so shamed, and so unsure that I was “good enough” to be a zen monk. I tried to explain to whomever would listen my story but, I learned the reality is, people just could not relate. There are very few people in Zen with severe spinal disease, and even fewer who suffer from severe chronic pain. However, I believe there should be much much more. At my zendo, I have even gone as far as stopping correcting people with physical issues during zazen. I don’t care if they lay down, sit in a chair, get up to complete the round in the other room, or take a nap to settle their bodies and minds. It takes a lot to deal with chronic pain, and then the normal peppering of sesshin pain and suffering, and it can be overwhelming easily. As long as I think they are trying, that is enough for me, as it was good enough for my teacher. Now those who have monkey mind, well, that’s a different story.
I invite you to further educate yourself on the current politics which are impacting chronic pain patients. The current attempt to rectify the actions of the past have created a hysteria around pain management. This hysteria is greatly impacting the lives of those who suffer from chronic pain, and the physicians who treat them. Let’s work towards a balanced approach, which addresses opioid addiction and abuse, while also protecting those who truly need it.