Reflection on Choir School Week

I think I'm decidedly still recovering from choir school week, singing for hours, going to worship, re-meeting friends and making new ones, and other hijinks.  I've been physically and emotionally exhausted (otherwise known as "peopled out" in this house), but spiritually filled.  

There is definitely something different in returning to a place than there is in experiencing it for the first time.  Names came in spurts and pieces, many of them that I had seen with tiny pictures attached to them on Facebook but could now connect in person once more, smiling and breathing.  Shared silences, important conversations, a hug that lingers because it needs to, a smirk from across the group at rehearsal, and all in between.  There were a few individuals that came up and told me that they appreciate my blog, which is certainly good for my heart, too, in different ways. ;)

And there's something holy, too, in singing together in a group like that, a hundred and forty or so voices holding together in the same song, different notes that make up the chord.  Every voice there has a story, contexts and baggage that they bring with them to the song, different meanings that the text of the piece means to them as a result.  Watching, anticipating, breathless, belting out notes together as one, there is a real sense of belonging in choral singing.  And there is a real sense of belonging, especially now, for me with this group.  

If you're interested in joining us next year, by the bye, I would encourage that you check out this link here.  

With all of the singing this week, I've very much been thinking about my abdominal muscles.  I can't quite breathe, still, the way that I used to, as far as getting a choral breath.  I'm not sure how much of this is permanent and how much of it is still latent weakness from the surgery.  Additionally, I'm not sure how much of this is actual muscle weakness and how much of it is mental--I think about it every time I take a deep breath and engage the muscles I remember I'm supposed to, there's just that spot that feels odd where Melvin is and I worry, which takes away my focus.  This week provided me with some "workshopping" time to think about that a bit more than I had in a condensed period.  I might have figured out a couple of things to keep trying (and I'm sure I made more than one interesting face in that process).  

I was trying to compare elements of this trip to Choir School against the first time that I went.  As humans, we like finding patterns, always comparing new things to things we already understand in order to find some footing in whatever the new thing is, hopefully allowing this experience to flex and become itself in time.

I struggled with this once it clicked just how much my health last time had colored parts of the experience.  My need to feel included is often at odds for my need for self care--I've known that about myself for years. As my health has fluxes and the target moves with it, it's there still room enough left to really live? Intellectually, I understand that it is important to pull away from the group when I need to rest; in practice, I resent the hell of out of it.

Feeling this much better this time and being able to fully throw myself into the experience was wonderful, and definitely put further into perspective where I'm at now and just how badly things have been.  That sounds positive, but it actually is a slurry of emotions.  I don't like how skewed my perspective is.  I resent how much I've missed out on, especially understanding better how distracted I was.  I'm all the more grateful to be where I am.  I'm so angry about how long I was in that state of health, that I could consider it"normal."  How many other things have I missed out on or not embraced fully because I was too busy weighing my energy budget?  Or where have I failed to be present?  What am I looking forward to doing now that I can?

...yes, I'm aware that at least three of those are the same thing in different words.  I have a lot of grieving yet to do about missed opportunities, relationships, and all else that I've missed as a result of my disease directly or the self-care ramifications thereof.  There's a lot to cry about in the same moments that I'm relieved to reclaim elements of who I thought I was, establishing wholly who I am now.  But that's the paradox in a nutshell now:  my excitement and joy in participating in life again also brings into focus all the grief I have in missing out on it in the first place.  Isn't that a delightful mess to sort through?  

There's a lot more to unpack with that.  What I'll stick with now, though, is my gratitude to be part of this community and the other relationships that have been warm spots in my memory.  Thank you all for adding splashes of color to my life.

A Piece of "Old Normal"

With all things Melvin, I've mentioned more than once this idea of finding a "new normal," even specifically to highlight that trying to find a sense of normal is a moving target.  This is something that is applicable to any grieving process, that the event or loss itself is never erased from that person, but instead that they find ways to adjust and continue living with that event or loss as a part of their lives forward.  

I'm sure these have a more proper name than "Chinese Star."

The Fourth of July rolled around again this year, as time does, and I rode down to the park in Hopedale where all of the carnival rides were set up.  I wandered around with my cousins and uncles and aunts, the air heavy from the smell of corndogs and mustard and the humidity of a hot July night.  My cousins were sorting out which ride to go on first, eyeing the line for the Chinese Star and noticing that another one was loading exactly at that moment with no line.  I went on one ride, curious to test how it might be different with an ostomy--as expected, I felt the same kind of dizzy and nausea that I normally do with that particular ride, but it was still good to feel I'd had a safe, small kind of test.  While my cousins were already in line or boarding another ride, I stood talking to members of my family I don't have the opportunity to see very often, catching up a bit.  

And I wasn't running mental calculations for when I needed to sit down again.  I wasn't scanning the area for the nearest bathroom.  I wasn't checking in with my energy with that particular exasperated sadness, already knowing it was close to spent but that I desperately wanted to still be a part of things.  I was able to be present with my family, my needs and concerns present but less urgent.  Relative, internal quiet amongst the happy/terrified screams of the Tilt-O-Whirl.  

That was one hell of an affirming realization--this is a small litmus test, supporting that I truly am getting better.  I have tangible, real progress, marked through the memories I have of coming down to the park for years and years.  

Here's where we connect back to those beginning thoughts:  when I told Andy about that revelation later, he said, "Sometimes the New Normal can be the Old Normal."  I have some mixed feelings about this thought.  This goes against the grain in my understanding of grief, that I want to affirm that going back to "the way things were" as a nostalgic, shining beacon isn't the right kind of goal in grieving.  However, there was definitely a warm familiarity about this kind of normal that was vastly comforting, like a pair of broken-in shoes.  When we drove home from Hopedale, a tiny town in the Midwest of less than 1,000 people, there was a kind of calm I felt this year that had been missing previous years, where I had felt that I had somehow failed to complete family traditions because I was too distracted or wiped out to enjoy them.  It was some level of my old life that I needed, even though my life now is vastly different.  In other words, I'll accept Andy's statement with a slight amendment:  "Sometimes the New Normal can be familiar."  It's not exactly the same--there are different worries and different situations--but there is enough tradition that it doesn't feel like we're fully rewriting it.  Truly, everyone has always brought new stories and experiences from the year to these events anyway, meaning that Melvin almost seemed like a rather large bullet point on that "How was your year?" conversation.  

Soon, I'll be heading to Family Camp for a chunk of the week where I fully intend to take a Sunfish out and play Spoons, Pinochle, and other board games with my family.  I'll have an ostomy to maintain, but I think I'll have great deal more energy to actually enjoy the traditions as they have grown and as they are also familiar.  I'm hoping to find that my old activities that used to bring me peace can do so again, with maybe a little less of that  drowning background noise of my anxiety and depression around my disease.  

I can't wait.

Melvin & Me, Part 13: Melvin Bares All!

I have little problem discussing my ostomy openly and adjusting and/or attending to the bag itself as necessary--hell, I get dressed in the locker room at the gym leaving the bag exposed as long as possible to air dry, almost daring people to ask questions while also asserting that I belong in that space and am unashamed to be so.  However, in the same breath, I have held a few things back, some for my own comfort and some for the perceived comfort of others.  This is a disservice to us both, I feel.  So, today, I want to show you Melvin.  Anyone who does not want to see pictures of intestines poking out of a surgically-placed permanent hole in my abdomen should turn back now.  

It's a risk to post this.  It's a risk to show what this really looks like and what it really is.  Someone might be grossed out and unfollow.  Someone might never be able to look at me the same way again.  But mostly, I feel exposed in a very different way, which is the scariest component to me.  The bag itself serves as both protection for my clothes and containment, but it also keeps some of the reality of my situation slightly obscured, too, meaning that it can feel just like a weird, oversized bandaid, an abstract rather than a concrete fixture of my body.  

But this is real.  That's hard to digest some times.  I expect people to be okay looking at plastic and bandages, but even I sometimes struggle with looking at the stoma itself, when I consider it outside of the clinical understanding or am checking the skin around it.  I know all too well the full weight of what it actually means.  Removing the adhesive and plastic that holds me together and exposing the full truth, it makes me profoundly uncomfortable in ways that even re-reading and editing this a few times over I still feel I cannot adequately describe it.  

But here it is.  This is me.  And this is the ostomy that helps me live a fuller, healthier life.  

Melvin is about the size of a half-dollar.  The deep pink part there, that is a piece of my intestines folded back over itself and sewn to my skin.  It moves with the natural peristalsis of my body, the process by which food is moved through the digestive tract.  Sometimes, that piece of intestines sticks out almost an inch from the surface of my skin; sometimes it is an eighth of an inch or so under the surface, a concave, breathing swell of living tissue.  I can touch my intestines, force my finger into the hole to swipe away bits of carrot that are stuck around that entrance.  I can feel pressure, but it doesn't hurt--those kinds of nerves aren't there because they're not anatomically needed there.  It's okay to leave this area exposed--in fact, I like to let the skin breathe for as long as possible--but Melvin has a propensity for "erupting" before I fully realize what's happening meaning that I try not to push my luck longer than necessary.  

This is my body.  Melvin is a part of my body.  I am not ashamed of my ostomy.
  

And here we are all dressed up again, ready to go about life once more.  That could be swimming a mile or Zumba at the gym, trying to figure out how to ride a bicycle, going to work, hanging out with friends, or most every life activity.  

I am glad to have Melvin in my life.  My ostomy helps me live the best life possible.  That doesn't mean that it's not hard to stomach (so to say) some days.  But there it all is, raw, real, and very much a part of who I am.  

Joining Traditions

An interesting moment when joining any family is that first major realization that they have had traditions and a history long before you got there.  For example, Andy's family decorates Christmas cookies, risk bodily harm over chocolate torte, and have a particular prayer before every car trip.  There are catch phrases and references to old stories that happened years before that I then get learn about, brought into the fold with that shared knowledge, since it is impossible to fully relive the experience.  My side of the family has taught Andy Pinochle, brought him to Hopedale for the Fourth of July, and has him randomly reading names from the credits after the movie has finished as though he knew the individual in question.  From the foundation of our families, we have the opportunity to build our own traditions, house rules for different games, and inside jokes.

However, there are points where not knowing the reference, story, or correct reply to a particular call-and-response can feel more isolating than anyone intends.  There have been points where I have felt more like an observer than a participant.  For shy folk, I expect this lasts longer than it tends to for me.  I have the ability to choose to politely insert myself.  When I don't understand the tradition, I ask about it; when I'm not invited in, I introduce myself.  Or sometimes, I find joy in observing others enjoying their traditions and am content to be an outsider.

As an example, I'll put out Epworth Forest Choir School.  This is an important tradition for Holly, Andy, and Mamma P in particular, that there are strong friendships and memories tied with this particular week of events.  I've been once before, and I remember specifically approaching the week wanting this to be something important for me, too.  It was a particular fluke that it was an anniversary year for the group, meaning that there was a LOT of reminiscing about all kinds of events I had not been a part of nor had any context for.  I confess that by the end of the week, I was very tired from hearing how things were at the old site or "St. Varner," as I stared to refer to the founder in my head.  Folk that were eager to talk to one another and catch up on all events that had happened since they saw each other last or from years of choir school experiences weren't always great at inviting people to their table, however, I introduced myself to different tables and joined the discussion anyway, asking questions to invite the stories to continue.  I remember a handful of names and a few special conversations.  I have been able to meet with folk outside of that context for different reasons and keep those people in a special place in my heart.

But this year, I'm coming back.  I'm returning, which is a wholly different feel.  I have a general idea of how the flow of the week works.  I have some foundations to work off of and faces that I know (relearning names rather than starting from scratch).  There are people that know me and that I'm looking forward to catching up with.  I know that I can belong there.  And I am not so far removed from that outsider feeling that I know I will be conscientious of making sure that others are welcomed and included where I can.

How do you insert yourself in them and make them your own?  Here's the shortlist of my recommendations:

• Participate--join the game, ask someone to teach you the song, clap along, be present in the moment even if you're watching.  If you leave or stay out of it, then you're not part of the new memories either.
• Ask questions--what's the significance of the story or the history behind that tradition?  Sometimes people will remember that you don't have that context and offer an explanation, but sometimes they won't.  Rather than wait, asking about it indicates that you are interested in learning about the group.
• Don't pass judgement in the moment--it may seem like a weird tradition or kind of off-putting, even.  Provided it's not harmful to you or others, a bit of weirdness might be okay to try.
• Don't make it about you--this is about experiencing, not making yourself the center of attention.  The goal is to be a part of it rather than to take it over.  

And if you are on the other side, trying to be welcoming to new persons here's a shortlist of recommendations for you:

• Invite--don't half-ass this.  Really bring that person in while also being respectful of their feelings.  Specifically, if they say "no" take that as your answer, with a maximum of one "are you sure?"  
• Inquire--find some common ground by asking bout their traditions, too.  Get to know them and what history they have by a communal sharing.  Perhaps you may want to include some of these variations or new ideas next year, to really make that person included.
• Be mindful--while celebrating yourself and those you love, still keep an eye out for others.  Who is on the outskirts?  Who looks uncomfortable?  Who is alone?  Watch the body language.  Offer a smile.  See that their needs are met (food, beverage, general comfort).  Maybe stand by them for at least a time to make them more comfortable.  

"Traditions" is left vague intentionally.  This could be newcomers to family events, friend groups, work, or wherever else.  We've all been on both sides of that, and it's important to be mindful of our part in those situations.

Happy Blogiversary!

So, some of you may have noticed a recent uptick in posts in the last few months.  I've mentioned before that I've started putting some dedicated writing time into my schedule and that has helped immensely as far as ensuring that content exists, but sometimes I still only come out with one decent post or start something that needs more attention later.  There are a number of half-baked posts that I've started and come back or end up incorporating the ideas into something else or occasionally delete it out of my drafts page.  Occasionally, I realize after posting the Tuesday post that I have something important that needs to be added and make a quick-mini post for Thursdays.  It depends.  

The scheduled time helps but doesn't guarantee that I'll have anything to actually post.  The original benefit of the scheduled time was more about keeping in the discipline of writing, making sure that I am in the habit of creating.  I find that this helps ideas flow more smoothly--I mean, practice is always a good thing--and otherwise helps me keep my eyes open for more things to write about, since my self-enforced posting schedule keeps me writing instead of getting caught in that lull between projects.  

The question, then, as I face Thursday in the week, is when to hold back on a bonus post and when to push it forward.  Heck, there are some weeks where I'm not sure if I'll have anything to post on Tuesday.  When I look toward the weekend, I may or may not be able to follow through on my writing time when we have some other plans sitting on the weekend or perhaps even with the time I still won't have much left to sit on.  Staying on my schedule and occasionally posting on Thursdays involves a bit of faith.  I have to trust that I'll be able to produce something.  

I worry about quality as I ensure that consistency.  I worry about making sure that I have enough to pad the weeks if its needed.  I overthink about the timing of certain posts and when to hold some of them back.  There comes a point where I'm not sure whether or not to put certain thoughts out there or let them cool until I can check them again with fresh eyes.  

Then I go back to read old blog posts.  There are things that I would rather change.  There are minor typos that I cannot believe I missed.  There are overly didactic posts or some elements that come out more condescending or preachy than I had intended.  But then there are some good moments that shine out anyway, at least in my opinion.  I remember where I was both emotionally and sometimes physically when I wrote some of these different components.  I remember which ones were hard to write and why.  I remember how some posts instigated different conversations with people in ways I hadn't expected.  

Pouring out these ideas has meant a lot to me and it has meant things to other people.  What I take from that is that it is usually best to get out of my own way.  I trust that words will come, that new ideas will happen in time (even if they're not necessarily good ones).  Making content, creating things with regularity and intent:  I'm still immensely glad for having started this blog three years ago.  This post marks the 170th which while not a nice round number is still a good one.  

Happy anniversary, all!  Thank you for being a part of it.

Peterson Family Saccarine

So, we've talked about our pet, Sprinkles, on a blog post or two, but there is another member of our household that we interact with on a daily basis that we hadn't yet named.  When I was at my last surgery at Mayos, both my parents and Andy bought me a couple of stuffed animals, with the specific intent that they were not only comforting but also as ammo to toss at Andy to get his attention when I needed help in the middle of the night when it was his turn to stay with me, since he doesn't stir as easily as either of my parents.  I received a tiny, white seal, a penguin with a hat, and Andy picked up a small, white unicorn with enormous eyes for his little body and a rainbow mane.

I'll admit that I was skeptical at first.  It was cute but, seriously, sugar overload.  And then Andy pointed out that according to its tag, the birthday was the same day as our anniversary.  Yeah, give the man some extra points, there.  Pixel the Unicorn was just a part of the house for a while, a silent figure by the nightstand.  I'm not sure when things shifted, necessarily.  I think it might have been a day when Andy was feeling particularly down and I insisted that he take Pixel to protect his dreams.  This eventually evolved to a point where we trade him back and forth every night, holding him close while we're watching a show in bed, and even holding conversations.  

Yes, we're both thirty-one years old.

This is a picture Andy had sent me when I was onsite at work.  

It still makes me smile.

I don't know why it's so fun to have Pixel (sometimes called "Pixelcorn" since "Pixel the Unicorn" was more cumbersome than necessary) "talk" in appropriately happy or concerned snorts or to have him emphatically kiss-tackle one another.  It's nice to have something to hold when going to bed on a summer night, particularly when another human body is going to be too warm too quickly.  He's part of our bedtime rituals, and there's something charmingly innocent about it.  As a result, Pixel is developing more and more "personality."  He occasionally sneaks along into overnight bags when one of us is away for a night or two  It's a different way that we can voice affection for one another, weirdly enough, insisting that a stuffed unicorn wants to snuggle the other or make sure that they have sweet dreams by sending Pixel to "recalibrate" the other's pillow.  I feel that I should be ashamed to be enjoying a stuffed animal this much at this age in the same breath I can't be bothered to.  It doesn't hurt anyone to enjoy it.  In the end, it's still about loving each other better and embracing a sense of play that is important to us both.