Tuesday, July 18, 2017

Perspectives and Baggage

Since I have officially confirmed with my two main doctor contacts at the Mayo Clinic in Rochester, MN, and have also confirmed my time off through work, I have switched gears now to planning out the practicalities of travel--this is probably my seventh-ish trip out there.  This week, though, I've found that making an announcement like this had lead to an interesting range of reactions including (but not limited to) the following:
  • "Are you getting surgery that week?"
  • A long, sad "oooooh."
  • "Is it that bad?"
  • "Oh, that sounds good."
  • "...what does that mean?"
I especially appreciate the earnestness of that last question, a very honest response asking directly how they are supposed to respond rather than trying to guess.   

So here's the thing--I look at this trip as just another round of doctor's appointments, potential tests and the like.  This is the next logical step in my care, where we have exhausted a significant portion of the options here and thus my concern is being escalated to the next level.  All procedural.  

There is a significant difference, however.  See, when I started coming up to Mayos, my father did something simple but very clever:  he asked what I might want to do along the way.  So far, we've gone to the Mall of America a couple of times and we took a Duck ride once at the Wisconsin Dells on our way northwest.  We always get sushi the night before bloodwork because there were specific fasting rules that exclude a lot of everything else.  We get Caribou Coffee after said bloodwork or the first doctor's appointment, whichever the case may be.  We wander down to the Barnes & Nobel that is set up in an old theatre.  We check out the game store or the Scandinavian store while we're killing time between appointments.  We go to see a movie the night before surgery.  There are certain places that we plan to go out to eat, like getting a burger at Newts.  We have made traditions.  

It is a damned inconvenience to drop everything and drive six hours away for a couple of doctors appointments, unsure of what tests they may or may not order until we get there and talk to them, but I'm looking forward to these built traditions.  That small frameshift took the Mayos experience from a chore to something that I'm excited about.  

That's what comes to mind for me when I think about Mayos.  There are vacation elements that I appreciate, shushing down the parts of my brain that try to remind me that I will be poked and prodded in some rather uncomfortable ways or otherwise that I might receive some news I might not want to hear.  

Through the reactions I have met, though, I've been thinking a lot about what kind of weight others bring with them upon thinking about the Mayo Clinic.  

My brother and I had a discussion about it specifically the other day.  To him, Mayos is this wonderful ideal.  We talk about what progress we've made on my case and highlight what parts of tradition we fulfilled that day.  He has never been with us, a sturdy part of the "holding down the fort" force.  There are times when it occurs to him that maybe we should just go back there whenever we're any kind of uncertain, that it is a Mecca of sorts, finished with a glossy veneer. 

I see why he thinks that, how we speak about it and the different places that we like to go to.  But Mayos isn't the place you go to for a cold--it is that fresh vantage point when you're exhausted other options or are officially "weird."  And, yes, I embrace that I am the latter, in a few senses of the word.  That I am going back there isn't great, that there are symptoms that my doctor and I need additional assistance with because they are not responding fully to what we have done to this point.  If one must seek help, though, we are going to a good place to get it.  I would never promise that Mayos always has the solution that you need--I have left disappointed before, a couple years back with some issues that linger--but they are a well-oiled machine, scheduling in appointments with multiple doctors from different disciplines (I'm getting surgical and medical consultation specifically, but a trip could certainly span over more) and tests all in the same week.  You will at least walk out knowing more.

Andy has an entirely different perspective about Mayos.  As of now, he is not joining me on this particular visit.  That is not to say that he has not asked me repeatedly if I was sure.  We've had many, many long talks about it.  I pushed instead for Andy to go to Choir School this week, that this was where he needed to spend that time off (as he runs into similar restrictions that I have).  The last couple months at work have been a struggle, to put it mildly, and I have been thoroughly concerned on the strain it has set on him.  For his spiritual and emotional well-being, Andy needed to be immersed in music, a community that has loved on him since his youth, and thoroughly separated from work--and sooner rather than later.  My father or my brother or possibly both have already volunteered to go up with me, so I would not be going alone in any case.  

And there's another reason:  for Andy, Mayos will always be the place that he nearly lost his wife.  He was with me when the original surgery fell apart, then he had to return home to keep working and make sure that I had a home to come back to and then also to keep our insurance through work.  He drove back, then,  a few days later at dangerous speeds when they thought I might have a pulmonary embolism, on top of all else.  Andy sees very little of my optimism at the moment, this kind of fear residing somewhere far past logic.  I am expecting sitting in a wait room and going through some uncomfortable tests; in Andy's heart of hearts, he wonders whether this will be the time I don't make it home. 

Now, someone might be thinking that it might be a good idea to bring Andy on this less-threatening kind of trip and celebrate in the traditions and new memories to overwrite some of the old.  Sure, exposure therapy can work really well, but that stress on top of not having Choir School Time  for another year on top of waiting longer to take a much needed break from work?   It's not that I don't want him with me, but instead this is a recognition of meeting both of our needs as well as can be expected right now with the restrictions that we have.  I will have people with me for support--and the added benefit of some catch-up time with members of my family.  Andy will be adequately distracted and be able to recover at least a little in places he sorely needs it, knowing at the same time he'd still drop his schedule to go with me if I asked him to.  This is a dreadfully unfortunate situation, but these are certainly the right kinds of arguments to be in with your spouse, ultimately debating the best way to serve the other.  

I can't promise that it's always that way--dishes pile in the sink or someone forgot to finish out a chore the other needed or whatever else--but balancing out my health and Andy's health together has a way of stripping out a lot of unnecessary pieces.  We've lost some elements that we want to get back--most notably practicing music and time with friends--but the focus has had to be on multifaceted front of self-care.  

I don't really know how other people feel about Mayos when I talk about it or when I mention some symptoms so flippantly, because I cannot fully understand the emotional and historical baggage that someone has brought with them, for this situation and for others.  The reading of a poem, a line from a play, a lyric from a song changes based on what the audience brings into it.  A comment that you don't feel is offensive at all suddenly takes on a new significance that the speaker never intended.  Our experiences help us frame how we see and interpret the world. 

I'm not specifically saying that I need you to approach me or even Andy specifically with soft hands regarding Mayos, my health, etc. but instead I would encourage us all to be vocal about those different invisible weights and connotations when we need to be, either asking for clarification from someone else or stating your own concerns when needed.  They're always there, and no one knows about yours until you say something. 

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