In October of 2005 I was told that I have a progressive form of Multiple Sclerosis, while also being diagnosed with Devics Disease a few years later. On January 26 of 2006, my wife gave birth to our daughter. I spent the first year of my daughter’s life sick. It was and is a life with symptoms that made it hard for me to walk, hard for me to have any feeling below the waist, both legs numb and tingling at all times never to subside, muscle weakness, loss of coordination, loss of muscle toning causing stiffness, pain and restricting free movement of my right hand and left side of my mid selection, optic neuritis, electrical shock and buzzing sensations zapping the middle of my back, fatigue, and random other whatnots.
Six years into this journey and 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. Being a father, husband, photographer and business owner has saved my life...all because I want to be there for everything.
I want to help you in your life in whatever way I can. My goal is to get others with this disease to stand and walk, to create things, to connect and to grow; to be well with a disease without a cure.
I want to be the Lance Armstrong of MS/DD. I want to start telling the world about how to be healthy while having a disease without a cure. Armstrong did this with cancer and a bike. I want to do this with MS/DD, a camera, a pen and my feet.
This past winter of 2011 I was barely able to get out of bed and when I did I wasn’t able to walk without the aid of a cane. Slowly I started to move daily...now in August of 2011 I am able to trail run five miles. I have the goal of becoming a charity runner for MS/DD.
For six years I have kept a blog but never used the words MS/DD. Briefly at times I would hint to my illness but never would the words be said out loud. Why? Fear.
I am a photographer, people hire me with the expectation that I will show up. Never have I wanted to place doubt in a client’s perception of me. Fear kept me from telling the world.
Today I can say that MS/DD has made me a better photographer, business man and hopefully husband and a father. It has taught me to show up. To show up to whatever needs to be focused on that day. It has taught me how to live in the present, not to dwell on what might be. Trust me that is hard to do, especially when you’re in a dark place of illness. It has taught me to enjoy life, to give to others without expectations, to live with purpose.
At this point in my life I want to share my success stories (& hopefully your success story) of living a well life with a disease that has no cure.
Let me be very clear that I am not talking about a cure. This is about living well with the disease. I have chased down many snake oil promises for a cure. What I am promoting is not a cure. It’s an outlook and a philosophy on living your life.
I have taken an integral approach to my wellness, body, mind and soul because all are of equal importance. I think about moving my body, I think about the food (fuel) that I place into my body, I think about my relationships, I think about my thoughts, I think about quieting my mind. I journal, I blog, I play guitar, I take photographs, I walk, I run, I pray, I meditate.
This disease can attack me at any moment, and attack is the right word. A right punch from this disease can blindside me at any moment and I have been there, all too often. I get up slowly at times but I always get up.
Lesson learned #1. There is no perfection, only the process of what I can control.
I never wanted to talk about my illness. Still don’t. I do not want to be a person whose life is defined by the diagnosis of a disease. I want to talk about the lessons learned from living with the disease. These are not lessons on medical advice or tips or tricks to wellness, nor are these suggestions on how to handle side effects from medicine. These are lessons about putting in the effort.
My goal is to help others lead a life filled with health, creativity, simplicity infused with the “heart of a servant” and the “strength of a fighter”. And that takes practice.
I invite you to join me in this journey. Please pass this along if it inspired you. Facebook this, Tweet this, e-mail this to friends and family struggling with these diseases.