Two years ago I was fighting one of the biggest battles of my life. I was fighting for MY LIFE!
I suffered from Adhesion Related Disease; and I suffered with it for 16 years! All but two of those years found me searching, begging, fighting and battling my way through Dr. after Dr., surgery after surgery...only to find what I thought was going to be a resolution for my pain and suffering, turned out to complicate it even more! My experience is by no means unique to me. It is repeated over and over again by most people who suffer with ARD!
What happened to me during those 16 years was simply due to being uneducated about my own disease; and if anyone were to ask me why I wasn't educated about ARD, I would tell them that I did not know of any way to secure any information about it...not through the Internet, not from my attending physicians, not from the surgeons, and last, but not least, I could not find information about ARD in any reading materials I had access to...which was quite a few by the way! It simply was not talked about. I went to nursing school and I never ever heard the word, adhesions, mentioned!
I allowed my medical care providers to do anything to me without question. Without a single doubt I trusted them...that they would do anything to help me get better so that I could again live an active, pain-free and comfortable life! An intervention of that kind was not to be found for me anytime soon. Instead I was subjected to even worse pain and suffering following each surgery!!
To add insult to injury, I was never offered any information as to why I suffered what I did. I was not only suffering physically, I was tortured emotionally and psychologically by the lack of knowledge that seemed to surround this disease.
If there was anything positive in any of this, it was that -- after a number of surgeries and having the pain and associated symptoms of ARD return to plague me repeatedly -- I figured out that something wasn't right here. So I started to question things...and I haven't stopped!!
I'm not going to say that I don't have some anger and disgust about all of this...because I do. I am not going to say that what happened to me and to thousands of others, who suffer with ARD, isn't the result of negligence...or that it isn't due to those within the medical field having no more of a clue about how to effectively resolve my symptoms than I had. I don't know why this happened to me; and I don't know why it continues to happen to others.
What I do know is that I am standing here today; and I am healthier now than I have ever been in the past 16 years! This tells me that there ARE answers, and that there ARE ways to reach out and effectively help those, who suffer from Adhesion Related Disease!
Maybe help will not come in the form of finding relief from the pain and suffering of this disease; but I do know that people, who suffer from ARD, CAN find understanding through EDUCATION; and "peace" through COMMUNICATION, COMPASSION and RESPECT for the ARD sufferer!
When these simple measures are not met, it is not the Dr. who suffers nor is it society who suffers. It is the person who is living with ARD who suffers. It doesn't matter the age, gender, or race of the adhesion sufferer. A gaping wound is laid open every time they present with pain and suffering...and are met with IGNORANCE and lack of understanding from society as a whole!
Justice has been referred to as the soothing balm -- to be applied on those wounds inflicted by society's lack of awareness of ARD. But when there IS no justice, those wounds can never be cleansed and never be healed!
It is easy to understand "Post Surgical Adhesions." Simply put, " they cause your internal organs to stick together following a surgery." Simple! But ARD is anything but simple; and this conclusion is more than obvious when one reads the International Adhesion Society's Message Board!
The reason we are all sitting in this room today is the result of seeing far too many desperate people seeking understanding for their suffering, begging for help for their pain, fighting to be recognized for their disease, and searching for an explanation for what they have!
President John F. Kennedy said it best; and I quote, " We face a moral crisis as a country and as a people. Those who do nothing are inviting shame and suffering. Those who act boldly are recognizing right as well as reality!"
On behalf of all people who suffer from Adhesion Related Disease, I am asking that you hold those within the medical society responsible to do what is right and moral; because it is JUST and it is time!
Is it ever too late to do the right thing? For the sake of justice and for the hope of all those who suffer from ARD, I sincerely pray it is not!