As I write this, Queen Elizabeth II’s physicians “are very concerned for her health.”I am saddened at this message, glued to the television, and expect there is much more known behind the scenes than is revealed. We are used to this monitoring of what we are told by the media, but it has me thinking about the reality that many experience with their health, and what they want others to know. Some of us are extremely open and vocal, while others are extremely private, and all the gradients in between.
Clearly, there is no right or wrong. While I struggled for over two decades with
bowel issues and surgeries, I avoided discussion because I felt it impossible for
others to understand what I could not understand, nor could I explain what was
to me, the unexplainable. Once I had my ileostomy, I had words that were
comprehendible…I have an ostomy; I am an Ostomate; I have a community. It is
my goal, as many know, to make Ostomy a household word, and to that end, I will
mentor, educate, and guide any who need my assistance. But along the way, I
have met countless who are dealing with health issues who tell me in whispered
tones, their story, letting me know it is not to be revealed. We are all entitled to
our privacy, and to our coping methods.
Of course, those in my world are not British royalty, but I do my best to treat all in
my world like the special people they are. Those in my Ostomy Support Groups
are my extended family, and when they are hurting, I am all in on finding a way to
help. Our Group is also helpful in sharing their experiences, and often that is the
strand that leads to a solution. As Hillary Clinton famously stated, “it takes a
village!”
Whether one treasures their privacy or feels stronger by sharing their medical
issues, we are all encouraged to seek the best care possible. Know your rights
(Ostomates are protected by the Patient Bill of Rights) and do not give up. My
own experience took me to cities I would never have visited, and I learned from
those who were able to help, as well as those who were not. But I found my
answer by perseverance and determination, encouraging all to do whatever is in
their power to help themselves or those they love.
Although I have not been active in the ostomy community it is not because I am suffering silently. It is quite the opposite. I have found my brush with mortality has infused me with a desire or perhaps a need to enjoy my life more fully. I now live in the present and the future and create small goals to achieve daily. I have created an entirely new life for myself and my wife and consider my ostomy another challenge with the sense of inner satisfaction of more than coping with this change in my lifestyle. Although we have never met personally I have found you inspirational and encouraging for those less fortunate than us.