I Am Not Ashamed...I Will Continue...

Do I have a chip on my shoulder? What do you think? I live with neurological and arthritic pain 24/7. I’m taking seven different types of medication each day—between 11 and 15 doses—depending on how bad my pain is on any given day. So, do I have a chip on my shoulder? Yeah, I do!

Several parties have been slamming me for writing this blog and for going public with my life with disability. In the last six months I have been verbally threatened and received written threats for taking the positions presented in this blog. How concerned am I for my own safety and the safety of my family? It’s taken me almost six months to decide if I would continue this blog or give it up, as well as any future writings. But I am not going to be ashamed of being disabled and medically deformed. My family that has stood by my side and my right to free expression hates it when I use that term “medically deformed.” Fair enough. I’m not Quasimodo, but the surgeons have used exactly that term to describe my bone condition. Neither will I be ashamed of my suffering. My suffering is a source of strength and inspiration in my pursuits and success. I recognize that many people I know have labeled me reprobate and anathema for my embracing my disabilities, deformity and suffering. Nothing is more disturbing to the status quo than when a human being recognizes that embracing weakness, negativity and vulnerability is vital to one’s self-actualization. Once embraced and harnessed these “lower” aspects of the human experience can be considerable sources of power and can no longer be exploited by other ego-centric persons.

In terms of my Lutheran/Christian upbringing I recognize my disabilities, deformity and suffering as physical manifestations of God’s grace. My childhood pastor sat in the hospital by my bedside and told me tale after tale of how the prophets and those chosen by God were either pariahs of society, criminals or physically damaged. God chose these “flawed” humans as his vehicles because they more than any other could recognize the weaknesses of others and have compassion for them. Physical suffering and the reflection upon it is essential to being a good Christian. When a person suffers, whether physical, emotional or psychological it strips down ego and forces a person to look upon the suffering of others and empathize. And if we know suffering, we will never seek to make others suffer.

In terms of my Buddhist studies, my disabilities and my suffering with them is my dharma…my great teachers. These qualities open my eyes to the suffering of my fellow humans and keep me walking the middle path of compassion. I am challenged not to judge those who suffer regardless of their race, religion or nationality. If I step off that path and judge others or wallow in my own suffering too long, the karma manifested as my chronic pain slaps me back in line. If I can become detached from my own suffering and view it as neither good nor bad as simply a tool through which I can better understand the overall human condition I can not only learn to rise above my own suffering and hopefully educate others who also suffer. Suffering is power…a pathway to enlightenment.

Regardless of these analogies, I have been called a Satanist, charlatan, failed artist and martyr, to name just a few. Fortunately I have been compulsive in collecting the documents proving my medical, psychological and spiritual affectations and experiences. The more I am challenged and assuaged for sharing my story the more confirmation is given to me to fight on and tell my story.

In the simplest of terms, I have been dealt a difficult hand whether by a god or by a genetic fluke. I am making the best of that difficult situation. If that leads others to rebuke and resent my efforts so be it. I won’t apologize for being born this way. It took me many years to stop blaming my parents, God and the medical profession for conditions which none of them were responsible. I have made amends for these past relationships and am moving forward. My only concern now is securing and protecting my family and embracing what was once a source of shame and turning it into a wellspring of inspiration.

As I meditated over the last several months, asking for guidance as to what direction to go, I have been blessed by the reappearance and support of two long lost friends for my efforts. Additionally, I have had the unwavering support and unconditional love of my fiancée and mother, the confirmation of friends and colleagues close to me here as well as across the country, and the emails and comments made by folks I have never even met, all of whom have lifted me up and kicked me back onto the path of sharing what is my unique experience. I will not dishonor or disavow their faith and support by walking away from this path. Even though my neurological condition is beginning to affect my fingers and hands and my capability to write on this laptop slows down I will continue to communicate as much as I can even if the entries and chapters come less frequently.

Thanks.