So, I was approved for a life-changing medical procedure this week. If it goes the way we anticipate, it should completely alter my present reality. With a few cuts, and some recovery time, I can reasonably expect the following changes:
1. The current five hour minimum window that I require from when I wake up until when I am ready for the day should be reduced to one hour or less.
2. The current 2 to 3 hours between when my functional day ends and when I can go to bed will be reduced to a half-hour.
3. The current careful restriction on what I can eat and when will completely disappear.
4. My current need for 11 to 12 hours of paid care every day, most of which is at very particular time keyed to my biorhythms, will be reduced to three or four, only the aforementioned 90 minutes of which will need to be at particular times of the day. This should cut my weekly care costs by more than two thirds.
5. The vast majority of my daily pain will simply disappear.
Now, you are probably thinking to yourself, what a miracle that such a procedure has been invented. Isn’t modern science wonderful, and are not we lucky to live in a time when such advancements have been made. This is undoubtedly true, but the surgery in question, a colostomy, was performed for the first time more than 300 years ago in 1710, has been considered a routine surgery since 1950, and, with the advent of modern surgical techniques like laparoscopy, is even low-impact.
Now, you might say, isn’t it wonderful that a medical professional has finally identified that this procedure would help you. Again, it is certainly wonderful, and yet I must disclose that this procedure was recommended to me for the first time almost 8 years ago, when my latest gastrointestinal problems were diagnosed and identified, and we have known for at least seven years that it was really the only meaningful way that my problems could be addressed.
Why, then, has it taken so long?
One simple reason. I was unwilling to embrace the perceived departure from normalcy of having a bag on the front of my body collecting my stool. This, even though I knew intellectually that I had friends that had had the procedure, colleagues, even loved ones. This, even as my daily restroom routine, never normal due to my underlying disability, climbed from three hours a day to four, to five, to six and up to its current epic eight or more, becoming the central factor by which everything else was determined. I had left normalcy behind long before, but just could not bring myself to embrace this bag.
It was only my admission to rabbinical school, and my understanding that I simply no longer had the option to spend 7 to 8 hours a day in a hate-hate relationship with the toilet, that I, kicking and screaming, began to look at this procedure.
A dear friend, now a colorectal surgeon, began walking me through the procedure and the impact on my life. Another dear friend talked to me about the experience from the perspective of someone who lived it.
Swiftly, I learned that not only would it resolve my time dilemma, it would give me a restroom independence such as I had never known. Since the day I was born, I have needed help to use the toilet, and my reluctant muscles meant that it took longer than it did for a normal person. Even the “normal” which allowed me to attend college and law school and start my legal career demanded multiple hours per day, careful attention to eating, and regular help from another human being. All of that will become a thing of the past, once I recover and learn to change my own bag. By all accounts, this will be the biggest life change for independence since I began using a power wheelchair in 1992.
But, honestly, these practical realities were not the most important service that my surgeon friend provided. The most important thing that he did was to help me embrace the notion that I was drawing artificial lines of normal. I was drawing truly artificial lines between life realities that I could accept and life realities that I could not, based almost entirely on my own ideas about what people would find weird, and thus would impact relationships, intimate and otherwise, and what would not? He basically help me understand that I should expect that anyone willing to let me into their lives with my current realities should really be able to also accept a stoma and a stool pouch.
Why am I sharing this? A couple of reasons. First, in my professional life helping people with disabilities to overcome their obstacles, I have often found myself pushing people who struggle with taxing, exhausting, ambulation (walking) to consider wheelchairs, and those who struggle to self propel, to consider the freedom of a power chair. I told him that the stigma that they perceive is vastly outweighed by the independence they will achieve.
But how many other procedures and medical interventions fit this description? For the people I counsel, it was a wheelchair, for me it’s a colostomy, who knows what it is for someone else? Who else is restricting years of their lives, the way that I did, because the recommended departure feels strange? If I can empower one person by example, then this article is worth writing.
But it is more than that: I have resisted the colostomy precisely because, for some reason, we give ourselves license to talk about mobility issues, but an open discussion of poop or pee, that is weird, icky. If we talked about things like colostomy, or catheters, or enemas with the same matter-of-fact openness with which we discuss wheelchairs, how many more people would get the help that they need, because it would not seem so strange, so other. Different is only strange if it is outside of the world that people experience. My friend was not wrong when he suggested that others needed to accept the pouch, but he glossed over the fact that I did too. I too will need to become comfortable with this change, to the point where I can share it, and its realities, as openly as my wheelchair. I am going to use this blog to help me get there.
This, therefore, is my plan. I was approved for my surgery this week. I do not even have a date yet. Soon I will be scheduled for surgery, begin the preoperative process, and go through surgery and recovery. I intend to blog every step, sharing every interesting, unnerving, and occasionally disgusting experience as they occur. I do this for two reasons: first, I need to become comfortable talking about this openly. There is nothing more open than a public blog. Secondly, I hope it will encourage other people to share their stories of this common procedure, and demystify it for those who may be, like me, resisting the medical advice that would change their life. I invite you along with me for the ride.