Melvin & Me, Part 33: Melvin in the Media

In the last few weeks of my anatomy class at Heartland (before nursing school, back in April-ish), we started to cover the digestive system.  I sent a message to my instructor asking without pressure or expectation if she would like to use my experience to supplement any discussion.  She took me up on it.  Given our transition to online classes, I ended up leading an AMA (Ask Me Anything) discussion board for the class.  They were given a link to one of my blog posts to read through and then a forum to ask any question that they'd like.  A few mentioned that they had known a someone with an ostomy or helped folks through some health related experiences.  On the whole, I would say that most of the questions were in two main camps:  specifics about my particular situation (how I got to this point in the first place) and the emotional impact of it all.  

I have to consider time to time that because I'm open about having an ostomy, there is a sense of responsibility that comes with that.  I represent a community.  And I was grateful for the opportunity to speak with folks, to show a slightly different side of life.  

There are many other people here, too, but how often do you get to see something like this?

A genuine, positive representation?  Huzzah!

Ostomies are an odd kind of disability, in that I can be invisible about my ostomy maybe 75% of the time.  I don't have to talk about it.  But I need to.  I don't know how to be anything else.  I've developed techniques and scripts on how to talk about it, particularly as I'm fortunate enough to have a great therapist and people close to me that would willingly listen--not everyone has that.  And other people don't talk about theirs openly for their own reason.  What concerns me is if one of those reasons is that lack of positive representation.  

There's a difference when I talk to someone who has heard of an ostomy before to someone that has not.  For example, other nursing students have a base level of understanding and I can get right to the interesting stuff.  Seeing an advertisement that features a model with a colostomy was someone's first experience to ask "what's that?" which ultimately makes it easier to have a conversation later.  Someone starting from scratch, there's just a bit more emotional work to do, that momentary pang in the pit of my stomach:  I have to work to be seen today.  And mostly I'm happy to do that, but it does have that small emotional stumbling block.  Imagine telling someone about your home who had never heard of your country before.  There's a split-second moment where you realize something that was formative and had a depth of meaning to you didn't exist as far as the other person knew, an accidental invalidation.  You recover quickly and then try to find a sensible starting point for what that person is familiar with.  Learning starts by finding what someone already is familiar with and building off of it; finding that starting point takes time and energy to hone down.  

And that's partly why I'm vocal about mine, to at least be a starting point for persons that don't know how to talk about it.  This is media.  I'm a part of it.  I want to present it truthfully, which involves both positive and negative elements.  I want to be someone that others can point to or reach out to with "hey, I have this friend who was just diagnosed with Crohn's" or "I know someone whose son is getting an ostomy" and be that starting talking point.  When I get my nursing license, I want other nurses to know that they can snag me to help answer some of those deeper questions that patients have or for advice on how to approach a teaching situation for someone not past those initial grieving points.  And then when I can focus more on wound/ostomy specifically, I want to be a presence on the floor, even elect myself as a posterchild, if need be, for living a life successfully and openly with a stoma.  

Then the imposter syndrome kicks in.  Can I elect myself as posterchild?  Can I claim a public space like that?  Whelp.  Time will, I think, will make the difference:  the best way to establish myself is to work toward living my most authentic life.  The rest will come in time.