Keep walking as long as you can without the aid of a cain. Keep playing guitar as long as your right hand permits you. Keep taking photographs as long as your vision is intact. Every sentence would start and end with an expiration date.
I would stand up, thank them, shake their hands and walk out in to the waiting room. A nurse would hand me a stack of medication literature as if I was planning a vacation. The info would be cleanly packaged in different bags with DVDs, pamphlets and books all courtesy of some drug company. Believe it or not (believe it) I received junk mail from drug companies before my doctors gave me my diagnosis. There must be some kind of magical line between God and drug companies that sick people and doctors do not know about.
I would, many times, walk out of the doctor’s office and down that long hall to take that long elevator ride down to the sidewalk where I would make that phone call to my wife that would be a conversation with longer periods of silence than either one of us could take.
Living with a chronic disease there is never much hope of a happy ending. You go home and read list after list on what the times to come will be. It is hard to avoid the self-fulfilling prophecy that comes from reading the internet. Everyone will tell you...do not self-diagnose yourself on the internet, nothing good can come from this...that is true. When the diagnosis has been handed to you by three middle-aged men on a Monday afternoon it’s hard not to seek out what lies ahead. Words like “expectations”, “chances”, “prospective”, “subsequent” and “to come” fill up volumes of novels in my head.
There was never the hope that I would walk without the aid of a cain. There was never the hope that I would be able to play guitar or take photographs well into my old age. There was never hope that I would not lose my vision or my balance or my bowels or my memory. There it was listed, everywhere, every piece of medical propaganda, every Google search all laden with lists of what was to come. I was overloaded; a pile-high of symptoms to look for. So I did.
I no longer got tired; I got fatigued. I no longer had forgetful moments; I had memory losses. The bowels, thank God, never became a problem. I no longer got colds or flus; I got flare-ups, exacerbations and unpredictable relapses. Everyday medicine would become ineffective and I would get my body filled with bags of steroids.
Medicine would become surreal to me...as if my body had a steroid deficiency. Is this what my body needs?
Never did I plan for success, never did I plan to live well with a chronic disease, never did I plan on dying of old age and passing gracefully in my sleep.
Never did I plan on having a radical reversal of my symptoms until the day that I did.
As I write this it has been six months since I told the world that I have been living with a chronic disease (you can read about it here). I am at the start of my seventh year of living with Neuromyelitis Optica (NMO). A disease that I will never be able to spell….
This is my journey towards a radical reversal.
When I was diagnosed I was convinced that everything I loved was being taken away from me one-by-one. First my legs would go numb, weak and tingling as if they were permanently asleep taking away my love of walking through the woods. Next my right hand would go numb, stiff, clinching into a fist taking away my ability to playing guitar. Then my vision would go in my left eye, fearing my right eye would go soon taking away my livelihood of taking photos, not to mention the overwhelming fear of not seeing my daughter grow up or to enjoy a smile from my wife. Then the left side of my mid-section of my chest would go numb causing muscle weakness taking away range of motion to practice yoga (my personal workout of choice). To end the list of “Poor Me” is the electrical shocks that will randomly attack me by zapping me out of restful sleeps (and right out of any chair I happen to be sitting in at the moment).
The reason that I am sharing my story with you is because there are very few success stories out there for people living with a chronic disease. My intention is that you will share this will everybody. When finding a success story it is usually attached to some snake-oil sales pitch. Buy this, take that, place this trinket on your head, travel to this island for special treatment...the hope is always a giant leap of faith, money and a lifetime away. It is always directed at the desperate needing for you to have to place your faith in somebody else, which turns out more times that not to be a scam. This is not about purchasing! It’s about doing!
When I chose to no longer be guided by the prophecy listed in the medical propaganda, when I chose to no longer look for “what to expect” ghost symptoms in my life got better….
I began to observe my story, to observe myself, to discover that I am not a disease or a symptom. I observed what is true and no longer identified myself as having a disease. That was a breakthrough moment when I could say:
“I still have all of the symptoms listed above. What I no longer am is a person who identifies with being sick. I am not infallible...I get sick for periods at a time, I get flare-ups and attacks, I have an illness without a cure, I live with the effects that this disease has over me, but I am not sick. I live a well life. A life filled with effort and purpose by living a healthy and creative life.”
Today I not only walk without the aid of cain but I run, and run far. I have a new love for trail running, my enjoyment of the woods is back.
Today I not only play guitar but I play better than ever. It does hurt to hold a guitar pick so I switched to a picking-style that I enjoy more than my previous years of playing.
Today I daily see my beautiful wife and daughter and not only am I taking photographs but I am creating the best work of my life (so far).
Too often I would read about NMO and feel fated by what was to come. All too often I would not even attempt trying something new because I have been vaguely pre-warned that people with chronic illnesses should not attempt this.
A breakthrough example that I recently experienced was about heat. Heat can cause exacerbations, I have read this many times, so for the past years I have avoided getting overheated. You want to know what I discovered by avoiding heat? I am cold all the time.
A month ago I said F-it I’m going to try a Hot-Yoga class...in my mind I convinced myself that I would have a flare up, causing harm to myself, but guess what? I was fine, it felt great and 30 days later I am warm and well stretched out. I’m not advocating that everybody with a chronic disease try hot yoga, but I am advocating knowing your own body and with caution trying something new. Do not let your life be guided by a list on a website or a medical pamphlet. I do not wish to debunk the lists of lists that are written out there; the information is helpful. I do wish to debunk the notion that you can not try something new due to the fact that it is listed under the heading of your disease.
That brings me to my lesson learned: Do not give up on being human. Do not hand your health over 100% to your doctor; take an integrated approach to your life. Our bodies are not suffering from deficiency in medicine. We may need medicine at times but it’s not what we need consistently. Our bodies are deficient because we gave up on living and being human. Disease is only a symptom, the body is a mirror of how we live. The body speaks to us, learn to listen to the whispers.
Until we desire to discover how to be human again, until we observe that the label of disease is not who or what we are, when we identify the whole of who we are…..then we will begin to heal in body, in mind and in soul.
So here is my sank-oil sales pitch to you: go for a walk, create something new, share it, eat food (mostly plants), say a prayer, remember how to be human, again, as you did as a child.
Ask yourself this: Who am I? What is true? Can I identify myself as not having this disease? Question your fears….What if I….
My radical reversal is in my action, thoughts and intentions. I radically reversed how I think about who I am. I radically reversed the fear of living with NMO. It’s a shadow that I carry with me but it is not me. NMO no longer feels familiar for me to identify with.
As of writing this none of my physical symptoms have gone away (yet) but I feel confident that this is just the beginning of my journey….and that feels good.
