A guest post by Brian Miller
I would like to share with you a very personal story. It is a story of a lifelong journey with disease, the loss of life, and the love of God.
Please be patient as I go through this because it is important that you understand the journey that I have taken. It is not just about disease, it is about the romance of the disease, the attachment to it, and the mêlée between emotions, intellect, and faith.
My journey starts around the year 1979. One day I was perfectly healthy and the next day I started to depreciate for no apparent reason. Everything I ate or drank caused a bout of diarrhea that lasted hours. My weight went from 180 to 140 in a week’s time. In desperation, I started buying books trying to figure out what was happening to me. I ran across a book called “Getting Along with Your Stomach.” I to this day have this book. I self diagnosed myself with Crohn’s disease. Once I was sure of what I had, I went to the doctor and proclaimed my diagnosis to the doctor’s annoyance. Of course there were the many tests and examines that took place to confirm my diagnosis. After the barium enemas, upper gastrointestinal endoscopy, x-rays, colonoscopy procedure, sigmoidoscopy, the diagnosis was confirmed. Then with boldness, I asked him to prescribe the medication needed to eliminate the problem. To my dismay, he stated there was no cure. He went on to say they did not even know what it was. What caused it or even how to treat it. At the time, it had a second name, which was called “The Jewish Disease” because of its prevalence in the Jewish community. Upon hearing this, I became depressed and wanted to die. I could not imagine living another day with this hideous condition, leave alone a lifetime. I begged God to take my life.
The doctor promptly put me on Prednisone and Sulfasalazine. This became a part of my diet for the next 20 years. I was on very high dosages of Prednisone. Ranging from 60 to 120 mg per day. I was on 120 mg day for over 5 years. I never really showed the typical side effects of Prednisone. At one point, I was admitted to the hospital for a week of observation in an effort to understand why I was not having side effects.
The years following my diagnosis were filled daily with pain. The pain was described by one doctor as that equivalent to birthing pains. The severity of pain was so intense at one point that I began to lose saliva control. I would drool so badly from my mouth that I would have to stand over a sink to keep it from pooling on the floor. I deteriorated into nothing as the years went by.
During the first twenty years of this disease, Prednisone and Sulfasalazine were the main treatment. Later Antibiotics (Ciprofloxacin or Metronidazole), Corticosteroids, 6-Mercaptopurine (6-MP), Methotrexate, and Cyclosporine when I ended up in emergency rooms. Which happened more than I can remember. None of these worked as the Prednisone did.
The human body was not designed to deal with the kind of pain I endured over the years and it took its toll on my body and my mind.
As the days went by, I would find myself on my knees begging God for death and cursing Him for not fulfilling my prayers. I grew to hate Him and love and cherish Him in an intimate way never before experienced. He became a part of me that is indescribable. He no longer was a book, He was a part of me, and He became me within my perception of who God was.
On a 6 month to a yearly basis, I went through the standard precautionary examinations. These included x-rays and colonoscopies. In one of these examinations, a blockage was found and my first bowel resection took place. During this procedure, they removed my ileum and part of the bowel on both sides. This was approximately 10 years into the disease.
During this time, my day-to-day life consisted of living with the disease. I went from denial, to fighting, to embracing it. I became attached to the disease, and what I call “romancing of disease” started. I lived my life around it. It became my excuse. I dressed each day for it. When I would enter a building, I looked for where the restroom was. Every breath I took was taken with the permission of the disease. It owned me.
In the early 80’s I became an Engineer and worked in the computer industry. I spent 25 years in this industry and traveled to many places in the world. I went to a Jesuit University where I majored in Computer Science with a minor/background in comparative religion.
Throughout the years of my life, I had the opportunity to experience many things. I was a river guide in Colorado. I lived in Montana, Colorado, Arkansas, Virginia, Washington, D.C., Louisiana, Alabama, West Virginia, California, Florida, and Texas. I worked on the Star Wars program, I fly-fished the rivers of Yellowstone and Alaska. I carried the pain and disease with me through the many adventures that this life threw at me. In all of this, I always had the propensity to run. I ran from relationships, jobs, family, God, and myself. It was during these years I also turned to drugs. I treated the disease and the pain that it brought with many drugs to include indigenous drugs from the jungles of South America.
I believe subconsciously that if God was not going to grant me the prayer of death, I would. What one might call subconscious suicide.
While living in Austin Texas I was chosen to try Remicade. At first, it was a one shot opportunity. At this point, the fistulas had started to appear. Because of this, I became a candidate for the drug. I screamed and yelled up the insurance chain until they agreed to allow more treatments. This was quite a feat considering the $7,000.00 a treatment price tag. Eventually the FDA sanctioned maintenance treatment and I was going in every 6 weeks.
It was also during my time in Austin around 2006 that I lost my faith. It was not a loss of faith in God. It was a loss of my belief. I became very depressed and experienced what many have described as, the dark night of the soul. This lasted for over three years. In the three-year period, I started reevaluating who I was and who God was. I quit living. I emotionally gave up on life. It is my belief that the past years of pain and medication started catching up with me. This coupled with the loss of my belief drove me into a deep depression that had no end. I emotionally walked away from everything I loved and cared for. I moved to California on the auspice of coming here to help take care of aging family members.
The depression got worse and my spirituality became deeper. I really cannot explain this transformation. I became closer to God and as I did, the things of the world held less and less value for me. I asked continuously, is this it? I searched for the answer in book after book, belief system after belief system, and religion after religion. Not finding the answer, I was left with myself, and the damage of the past.
I was not able to recover. The disease flared-up and consumed me. I was found in bed un-responsive and rush to the hospital in an ambulance. I spent three days on life support and stayed in the hospital for approximately 35 days. During this time, they were not able to get control of the disease and I experienced my second bowel resection. I never recovered.
After the surgery, I got worse. The pain returned, the fistulas’ got worse, and I developed a new symptom of rashes all over my skin. The pain stayed at a level 10 and was now 24 hours. I slept in 30 minute increments because my bowel frequency was unparalleled to anything I had experience in all the years of harboring this disease.
My relationship with God was very close and my assurance of who I was and His love for me was stronger than anything I had ever felt. I knew in my heart that He was finally going to grant me my long sought after prayer. I was going to die. The joy of that thought made the days and nights bearable. I prepared for my passing.
Through the years of travel, I had collected things from different countries and a lot of art I had done and kept. I had an 1800’s family Bible and several things that were close to me. I packed all of these things together and sent them to my children. I gave away or sold much of what was left, and in anticipation and pain, I waited.
In May of 2009, my roommate approached me and told me she met a man whose grandchild had Crohn’s disease. He had created this liquid that he felt could help me. I responded that I did not want help and really, as if I need another miracle in my life as I rolled my proverbial eyes.
What I did not mention above was that through the years I had tried everything. I made my own food. I ate different diets. I tried everything from Probiotic products to vitamins to miracle cures. At every corner through the years was the ultimate miracle that resulted in yet another disappointment.
With her insistence, I went to see this man and when I walked into his dark and dingy office I felt there was no way I wanted anything to do with this. To my disappointment, there was a voice deep down pushing me forward. I accepted the plastic gallon jug he handed me and carried it home. He instructed me to drink 2 ounces a day 3 times a day. The taste was unbelievably horrid at first.
My attitude was that I had nothing to lose. Therefore, I drank this stuff three times a day. On the third day, the pain disappeared and I was able to sleep through most of the night. The frequency went down and I was able to sleep through the night within a week of starting the formula.
Today I am not totally symptom free and there are some resemblances of the disease present at times. However, I lost my ileum in the first bowel resection and bile can be an issue if I do not watch my diet.
For the most part, I live a productive, happy symptom free life. In my heart, I know the disease is gone. I feel that after 30 plus years of pain and everything else that comes with Crohn’s disease there is a body and cellular memory. As each day goes by, I laugh more than the day before.
I can tell each one reading this letter that what I just described is true. Actually much was left out because many of the past experiences would make it unsuitable for public consumption.
There is hope out there. There are things that can help treat the cause and not the symptoms.
Brian and I met on the Steve Pavlina forums – he had revived a thread I made a year ago reaching out for alternative treatments of Crohn’s disease. A lot of the experiences recounted here I can strongly identify with, even the awakening of spirituality through disease, though I had a more Buddhist style of seeking meaning in life at that time. There were times when having surrendered deeply into pain, I experienced afterwards a transcendental bliss that was unequalled to anything I’d ever known and the memory of which would later spur me on in my search to find authentic meaning in life outside of the “illusion” I found myself to live in.
Struggles like these teach us a lot – compassion for pain, obviously, and perhaps less obviously a sense of PERSPECTIVE in life. When you’ve seen how your ego doesn’t get its way and you are so much more fragile and powerless as a physical form than you’d ever imagined, there’s a chance for bullsh*t to give way and some real truth to shine through your heart into the world.
It’s my hope that our stories serve as inspiration to you and you won’t need to go through the same thing to find your version of God or self realisation.
How much of what you do or think would have meaning in the face of constant pain? When you’ve stared death in the eye and been forced to accept and even embrace its inevitability, how will you live?
When been forced to stop avoiding, you realise so much of what you do is avoidance. SO much of your life is a lie, a waste of time. And all your avoidance is only bringing your greatest fears closer to you – bringing death closer to you, one grain of sand in your life clock at a time.
Life for what is real. LIVE. Just live. Don’t spend your time running away from what is real, undeniable. Just live like you mean it. Live true. Just live.
A lot of people have asked me about the substance which Brian took. Unfortunately, I haven’t been able to get a hold of him – it seems that his email account is no longer working.
I cured my own Crohn’s disease by a combination of emotional/energetic healing and giving up gluten, as well as using fasting when I did have outbreaks. You can read this article for more: How To Cure Crohn’s Disease.
A clue as to what that substance might have been: I looked through the emails I had exchanged with Brian and noticed that he had sent me some charts about the alkalinity of different foods – I guess he was into the whole “alkalizing your blood” school of natural health. It seems me and Brian had talked on a forum, and he sent me those – it seems probable that I had asked him about curing Crohn’s, and he sent me those by email as a reply. (It was so long ago I don’t remember).
If so then I suspect the substance he took might have been nothing more than some edible alkali, probably sodium bicarbonate. You can consume it yourself safely by mixing it with lemon juice until it is neutralised (no longer fizzes). Sodium bicarbonate is similar to salt, so if you take quantities which would be safe if it were table salt (e.g. 1 tsp a day), then I don’t think you can harm your body. If someone tries this I would be very curious to hear the result.
In any case, I love this story because of the message behind it. Seek, and you will find. Knock, and the door will be opened to you. It almost doesn’t matter what the substance is.
Well, it does – but your process in overcoming Crohn’s disease will surely be just as individual as mine or Brian’s was. But I am convinced that if you keep trying, keep seeking, you will find an answer.