The New Normal Life With NMO
This is all that I know for sure:
Eat your vegetables and say your prayers.
In case of emergency, breathe and smile.
Do not give up on being human.
This is it, this is all that I have learned from living with a disease. In the past two years I have written 27 blog posts about life with NMO (Devic’s disease). You would think that I would have lots to share. Sadly, I don’t. Nonetheless it’s an interesting read if I do say so myself! Take the time, give it a read.
For the better part of this year I have not written about my disease, nothing on the blog, nothing in my journal. Did my best to keep it out of my mind as much as possible. I tried to transform the notion of this disease being part of me. I failed.
I was trying to lose my shadow. My shadow knocked me down. This past March I had an attack that put me in my place. Over two years on my journey towards a radical reversal gone. Back to the starting line. I did the work, slowly, daily, to rehab myself. Progress was minimal, my mindset was to learn to live with the new normal. The “new normal” is that there will never again be a normal.
The best part of my rehab was riding bikes with my wife. Rides that I soon would call my “soul scrubbing sessions”. During these rides we would go on to have conversations about life, health, spirit and keeping the blue fog of sadness out of my mindset. We would go out for maybe 30 minutes followed by a short walk. It is good. It is the best medicine. It is healing. If you do not have a “soul scrubber” in your life I recommend you get one; they’re not covered by health insurance, but by the grace of God.
Five months since the attack and I can now go for long walks in the woods but I can not run. I can go for two hour bike rides with my wife, but I can barely climb a hill. Some days I have energy, some days I do not. Some days I am sore all over, some days I feel light as air. The new normal is that there will never again be a normal.
For a long time I wanted to be the poster child to the NMO community. I wanted to get people to eat better, to exercise more, to not give up on being human, to live healthy with a disease.
Then one day I no longer wanted to be the poster child. I became tired of answering e-mails from people who never had the intention of placing effort into their wellness, never had the intention to put down the processed food, never had the intention to take responsibility for their own life. If this offends some of you, so be it. I am ok with that. Sometimes people just want to be sick and to have excuses for whatever keeps them from not being happy. Sometimes a disease is the best “get out of jail card”.
I was hoping to get Oprah to interview me for this part of the blog post, sadly she was not interested. I can imagine the entire show: “Part One: Lance Armstrong falls from grace. And next up after the break, John Craig ousts himself as the NMO poster child, stepping down from a made up position that nobody asked him to do in the first place.” Sounds like good TV to me. I’m sure some drug company would be glad to be an advertiser for a show like that.
Then life changes. You get sick, you get better but you are not the same. I became a chrysalis to my health. Not the same but morphed into something new.
Recently I have been receiving e-mails from people without a disease looking to help and inspire others with a disease. They are looking for someone who has succeeded in transforming their life with a disease. These e-mails breathe fresh air into my world. Thank you. To these folks writing to me I say: Go out and be that soul scrubber to whoever needs you. Simply writing to me means that your are doing the work needed to help others. God bless you.”
Lesson learned: Let me expand on the above three things that I have learned.
Eat your vegetables: In the begging there was the Garden of Eden, not the chemical laden junk food tree that only produced disease. Fruits and vegetables create a healthy life, processed foods create disease. Your choice.
Say your prayers: If you are going to ask God for help or ask people to pray for you on your behalf…earn those prayers. I believe in the power of prayer. What I do not believe in is waiting around for prayers to work. Go out and place effort into the prayers that are being offered up on your behalf. There are lots of things for people to pray for in today’s world. If they are going to pray for you, do the work, put in the effort to becoming a healthy person. God helps those who help themselves.
Breathe: People forget this one all the time. Take five minutes each day and simply breathe in and out slowly. Disease has a hard time living in an oxygen-rich environment. Breath is our connection to life. Breath is how we can quiet the mind. Purposeful breath is how we learn to listen.
Smile: Laugh your way through this disease. It’s ok to laugh out loud when you fall down. When you live with a disease it will bring sadness to those around you, to those who have watched you suffer at times. Giving smiles to those around you is one of the most healing things that you can do for others. Go ahead right now, breathe and smile. It feels good all over.
Do not give up on being human: (stay with me on this one)
The paradox is that there are no paradoxes. There is no such thing as the new normal. In Zen, we try to transform our suffering. In Christianity, we try to be redeemed from our sins. In disease, we try to get back to “life before the illness”. But in truth, all there really can be is the “is-ness” of this moment; it is what it is becoming. How we treat each moment is up to us. Sometimes we do good and sometimes we fall short and that is normal. That is being human. Do not forget that.
In ending, I may not be the poster child that I once envisioned myself to be. At best, I have learned to manage life with the disease…as of today I have not succeeded but I also have not failed. I hope that these words can help some of you along on your journey of managing your disease.
My journey continues…..
Heart of a servant
Strength of a fighter