Examining the Meaning of Full Disclosure: Something Even Harder to Share Than the Surgery Itself. Part II in the Colostomy Series.

Friends and family, so many of you have commented favorably on my recent blog post explaining my decision to revolutionize my life by getting a colostomy. At the heart of writing the blog post is the acknowledgment that I put off this procedure for a very long time because of my own discomfort with being public about my needs.

And yet, I realize that there is another type of need that is almost never talked about, at least in my social circle, because it is awkward and uncomfortable. That is financial need.

Rightly or wrongly, those of us in a true place of struggle tend to put on a good front. We do not want to admit that we are not making it ourselves, and we certainly do not want to admit it broadly, and look for help.

But this is insidious. First of all, who is to blame for the fact that we live in a world, and in a country where too often even those who want to work cannot, because of the loss of necessary medical benefits or some other program predicated on poverty will take things away necessary for life. Secondly, who is to blame for the fact that the safety nets in this country are wholly insufficient to the task, with unemployment benefits that can be a fraction of already insufficient paychecks, a supplemental nutrition program that falls so far short of the goal of nutrition as to seem Kafkaesque, and a Social Security disability scheme that is at once a tiny amount and is also predicated on doing no further work? Who is to blame for the fact that minimum wage and living wage bear absolutely no relationship?

Certainly, these are societal choices, not individual ones. Certainly, the need for help for an unexpected expense or a period of lost work represents not a moral failing on the part of the individual, but a practical failing on the society that have been living hand to mouth at best, and maybe worse, and makes no provision for the unexpected.

Knowing that, and knowing how hard I have worked personally to be independent and self-sufficient over the years, it is still hard for me to admit that, as my personal capacity decreased over the last few years, and with it my earning capability, I became increasingly unable to support myself, first burning through the resources that I had put away during my law practice, and then turning to other sources.

And that is the rub. For many of us, privileged as we are, running out of one’s own resources does not mean the visceral destitution of someone who grew up without our advantages. Rather it means that we quietly, and possibly ashamedly, admit to a few friends that we need help. Compounding the inequity of it all, we now become a burden on those few people to whom we felt close enough to disclose, so that a need that should arguably be distributed on the entire tax base goes onto the few unlucky enough to be in the circle of trust.

So, imagine a person living that way, on and off, for a few years. And then imagine a life opportunity like a colostomy comes along, life-changing, in my case revolutionizing and reinvigorating my ability to work at levels that I was unable to even at the height of my career to date. And yet, with it, another price tag.

Not, in my case, the procedure itself, which Massachusetts Medicaid should cover, but 2 to 3 months where even my already currently limited ability to earn could be limited further, and other things. A whole new wardrobe, as  I understand that none of my current clothes will fit over the bag. Plane and train tickets and food for the people coming to help me during the procedure and recovery. Other things that I cannot yet anticipate.

Like everyone else, I am then faced with a dilemma. Not doing the procedure does not seem reasonable, as it will just continue the downward spiral away from self-sufficiency that I have been experiencing the last few years. So, it means asking for it.

Obviously, my first impulse is to go to that same few people to whom I have been comfortable disclosing this need in the past, lest more people know that I do not have the wherewithal to do it myself. And yet, that is also not right.

After much thought, I feel like I have a moral obligation to ask publicly. Now, you might say, what do you mean?

Here is my logic: let us assume for a moment that the actual decision whether or not to make a change like the colostomy is morally neutral. (In this case, I am not sure it is because I would become an increasing burden on loved ones as my condition worsens, but let us assume that.)

So we reach that juncture, and for all the reasons of my last post, I decide to go forward. Again, in part because of my decision to go so long without treating a chronic medical problem, I lack the financial resources to get through it.

At this point, I have two choices: I can either do the emotionally easy thing for me, and go to the people to whom I have already been going, or I can do the very public thing and launch a GoFundMe campaign, or something similar. If I choose the first, my secret is safe, but I put those people in a terrible position. Either they need to come up with the resources, which may or may not be easy for them to continue to do, or they have to watch me not go through with a life-changing procedure. Even though they have no moral obligation, I have put an incredible amount of pressure on them, right?

Or, I can go the opposite direction. I can admit that I need the help, and throw it out to the public. Here, everyone person knows that they, particularly, are not the difference between whether I go forward or not. They give what they can, nothing more, and have faith that our collective resources as a community will get us to where we need to be. I have to admit yet one more type of vulnerability, but in doing so I have not tacitly on the burden around a small group.

I would offer this thought, then, to any who have made the scary, necessary decision to seek financial help from outside of your own resources. I understand the emotional impetus to keep the circle small, especially in this society that says that we are supposed to be able to do everything ourselves. I understand the overwhelming desire not to make our problems someone else’s problem. But, if you have already gotten there, I want you to think about the morality of throwing the net as broadly as you can.

Time to practice what I preach. I envision needing to raise anywhere from $7500-$25,000 to support me during this surgery. The certain cost is about $1000 in new clothing and about $1000 plane and train tickets for people to come and help me from all of the places that they will. The variable is the $5500 a month that simply represenst my monthly rent, food, etc. it is possible that I will find plenty of work that I can do after the first month, even though the travel that that the heart of my work will not be permitted for 8 to 12 weeks. It is possible that I will have almost no work at all for the entire three month period. The truth is probably somewhere in the middle.

Let us be clear, no one has an obligation to help me with this in any way. If I know that I have to go to someone for it, however, I have the responsibility to set aside my shame and my awkwardness at that fact and cast that net as broadly as I can. With that in mind, I am launching a GoFundMe campaign. I invite any to give if they are so moved and if they are able. Thank you.

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