Saturday, March 16, 2013
The ostomy world lost another inspiring individual with great vision and drive, who helped start a revolution of education, support and life preparedness for youth with bowel and bladder dysfunction or disorders - the Youth Rally.
In our world of chronic illness it seems that life is so ever short and although these losses aren't on a regular basis, it isn't all that unexpected either. We have a lot we are contending with for survival and quality of life - most have several diagnoses competing for treatment. Whenever one deals with the GI tract, there's always a threat of malnutrition and dehydration interfering with one's daily tasks, one's health, one's life. This is why it's so serious of an issue for so many of us - our bodies are in a battle to survive when they aren't working properly to obtain life's necessities. Cancer seems to be another common sideline occurrence, whether it's within the GI system or elsewhere. And of course for those of us with FAP, cancer's always a constant threat. This is not intended to scare or stress anyone, only for others to better understand the daily risks we live with, why it's not a walk in the park. Because of being under attack so frequently, we each find our ways to cope and we must or we'll be eaten alive emotionally and mentally as well.
When people are faced with many losses of life, we tend to start coping by compartmentalizing and dissociating from the event, essentially numbing ourselves. This is extremely common and necessary for anyone working the medical field and it's a mechanism I've grown quite accustomed to utilizing.
Throughout my life, since I was a few months old, I've been surrounded by death. I have lost more family and friends than I care to recall. And working in the medical field, I've lost more patients with chronic or terminal illness than I can track. Although I am saddened by the death of anyone I know, I don't grieve for everyone the same way. When I've lost very close friends and family members, I grieve heavily for months, even years but when it's someone I'm not extremely close to or I have a professional relationship with, I pay homage to their life but there isn't really a grieving period allowed. When my grandfather died, I couldn't speak of him for close to 2 years without crying. When my aunt died, all I could manage to do was attend work and school, every spare moment I had I spent with my family for months sharing family stories. When my best friend died, I didn't sleep for over 24 hours and cried incessantly with his father for close to 6 hours.
I can't menally afford to grieve so deeply for everyone though and that's when the mind protects itself and compartmentalizes experiences. And thank goodness for the mind's own capabilities! I believe this ability of the mind also lends itself to the ability of those with chronic illness or in the medical field to often have warped perceptions of life and morbid humors.
So please don't be harsh on someone if they appear to not be affected as deeply by a death as another person, it may be all the person can manage for they're own surival.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my at the time undiagnosed Abdominal Migraine which is now being treated.