About Food

I have a weird relationship with food.  Funnily enough, having an autoimmune disease that affects my digestive system.  Honestly, I would go as far to say that I have disorganized thinking around food.  There are a number of triggers and patterns that have made food a touchy subject for me.  

• I've lost thirty pounds in a month before because it was too painful to eat and I had no appetite--Crohn's flares are a beast
• Trying to force yourself to eat when the back of your mind screams that there will be Terrible Consequences! while simultaneously another part of your mind is screaming that if you don't eat there will be Terrible Consequences!...well, this results in Terrible Consequences! AND anxiety 
• Already experiencing a reduction in much joy of eating, eating something I don't feel I'm in the mood for is not something I can muscle through can be a special kind of nausea
• Back in 2016, I went keto and found that I felt better by sticking to that diet; I also felt very left out of the community aspects around eating
• The past few years, I've been doing a "lazy keto," where I attempt to stay mostly on diet but end up feeling terribly guilty at least twice a week
• Living with two vegetarians made it harder to find recipes that worked for all of us, which increased the emotional energy it took to plan out meals and groceries for the week and also meant that I reverted more to pre-packaged options and less cooking for our household overall

I know that it is unfortunately always a matter of time until my next Crohn's flare--that's what chronic illness do.  I acknowledge this truth at the same time I am relentlessly pouring my efforts into ensuring that this happens in the far-future rather than the near, always working toward a better state of health.  

All this negativity toward food, there is plenty of room for improvement, here.  So I spoke to my GP about a nutritionist.  And I met with said nutritionist.  Now I'm working through unlearning and relearning in some of the same spaces.  

Probably my favorite lunch so far

So far, I think it's going well.  Feeling full on keto compared to feeling full on my individualized meal plan is different--my body was conditioned to feel even the same portion sizes differently, in terms of registering the physical feeling of "full."  I've also had the chance to rediscover foods that I haven't had without significant guilt in a long time.  Homemade apple butter in Greek yogurt?  Hells yeah.  Even the general burden of what should I eat/cook this week is cinched down into seven days that I pick from, already designed and with dinners accessible to my housemates so that we can cook and eat together.  

I'm at the end of week two, now, still fine-tuning the rules and nuances.  At this point, my bodily hypervigilance is going to start to back down a notch or two, which will allow a more gentle introspection into how I am physically feeling on the plan, now that the crisis marker systems checks won't be flashing in background.  The anxiety parts of my brain that try to help protect me by planning through catastrophizing remind me that this could still go terribly wrong, but I have also learned to acknowledge them and work through those spaces only as much as they are productive.  Most interestingly, though, will be the emotional introspection about food in this time.  Eating is always an emotional experience, and I have a lot of negative associations to shake off.  There is space for reclamation, and, better still, there is opportunity for it.  

After a month, we can take a better sampling of change and adjust accordingly.  I get quarterly bloodwork for my Crohn's disease management as it stands, so a request for a couple of add-ons for my own curiosity and to check for progress in other metrics is also easily feasible (A1C to check if I have adjusted in sugar management from keto to a diet that has reintroduced carbs, for example).  I have many, many places that I watch concerning my health, where I can watch trending data, as well as keeping a general impressions subjective log.  

Ya'll--I am high maintenance in some interesting ways.  And I have fought for a long time to get to this degree of "healthy."  There are places where I have accepted a new normal; there are places where the current "normal" has been challenged and improved; and the line is incredibly difficult to discern. Having the emotional and physical energy to poke at it, though, requires a base degree of stability that I have not always had.  My limitations can change daily; the ranges that they can be found in, however, have been steadily increasing, advancing how good a good day can be and minimizing how poor a bad day can be.  It takes a lot of its own energy to manage this.  I'm grateful to simply have enough spoons to be able to investigate or even make an appointment in increments at a time.  I also have the blessing of a diagnosis that I can point to--not everyone managing their own care has this easily, languishing in the "unknowing" space.  There have been times when I had thought things wouldn't get better on a particular front and been right--this was a path, then, of radical self-acceptance and then leaning into how to make accommodations for that need.  There have been things that have improved over a period of years.  That's what it is to live with a disability, slowly sifting out what can be improved and accepting what can't, while simultaneously ignoring a lot of bullshit advice, even when it comes from a well-meaning source.  

So today, it's food.  A fundamental concept that I am deconstructing and re-interpreting into my life as it is now instead of my life as it has been.  And when life parameters change, so will the requirements.  And we will adjust again, with a necessary amount of grumbling.  

Melvin & Me, Part 38: a...Fan?

So, I had a delightful first the other day.  

I was forming a new acquaintance at work.  While we were talking in a relatively calm moment, Melvin made a triumphant BLURB-BLURBLEBLURBLURB under my shirt.  I threw my hand over my side to muffle the sound, as I usually do.  "Ah, sorry, that's just my ostomy," I explained.  

"That's SO COOL!" they nearly shouted.  

And I blinked for a moment.  

They apologized immediately, hoping that they had not embarrassed me or overstepped.  I reassured them with equal urgency, that I was fine, just not the reaction I was used to, even telling her it was not the usual response.  

Normally, when I choose to reveal my ostomy to someone without an ostomy, there are three main reactions:

• Sympathy
• Gentle embarrassment and curiosity
• Total confusion, which after the explanation is then shifted to one of the other two

But this, this was new.  This was...enthusiasm.  There is a lot of brilliant ingenuity in the modern stoma creation process.  There is also a great degree of adaptation and reframing to live with one.  I even had to pause for a moment and think, yeah, I guess I AM pretty cool.  

I'm used to apologies and explaining that, no, really, this terrible burden is something that is very livable and truly gives me my best life.  I did not have to qualify the experience, that "well, yes, it is a burden BUT..." phrase I've said in different words many, many times.  

And then of course there were more questions, and the enthusiasm remained.  I left that moment with beautifully, bemused joy.  It felt pretty good.  I know I am resilient, that I have a degree of natural charisma, but I don't often allow myself to acknowledge that, afraid of sounding full of myself.  And yet, I am a marvel.  It's nice to remember on occasion.  My ostomy is a part of that experience, a part of me.  I am currently living better than I had thought was possible, in some of those darker moments when I had circled the drain.  Time is strange; so is our passage through it.

Another thought crossed my mind later:  it is problematic to reduce someone with a disability to "wow, what an inspiration!"  A person living with a disability is living their life; they don't exist to serve as a example to others on how theirs "could be worse."  However, there is a balance between recognizing the strength of the individual without turning them into a caricature.  In this particular example, I felt seen as a person rather than a person with a disability, which made all the difference.  I felt seen.  And it was nice to have someone else see the benefit without having to introduce caveat after caveat.  

Melvin helps me live my best life.  That can be inspiring; it can also be heavy; it is something that has profoundly shaped my experience.  And it's kinda neat.

Season of Change

I am not wholly certain if this is something that my confirmation bias has reaffirmed again and again or if it is something truly happening.  It's like getting a new car and then suddenly seeing the same car everywhere.  

To everything turn, turn, turn/ There is a season; turn, turn, turn

We are in a season of change.  I know that change is constant, yet there are still periods of time where it seems more turbulent than others.  Where instead of small pockets of change there are major changes, tectonic shifts that shake the ground under our feet in transition to a different elevation.  Both ground and water have to adjust.  

And there are spaces when it seems a community feels the shifting, that multiple bodies are kicked off their own feet for the violence of the shift.  Not all the changes are bad, but they do require a degree of reframing and creating new patterns.  

A time to build up, a time to break down/ A time to dance, a time to mourn/ A time to cast away stones/ A time to gather stones together

New houses, new jobs, losing and gaining family members, new conditions and states of being.  Flux and uncertainty.  Even for those I've spoken with that were not involved in some of the changes directly, they seem to at least be affected by those that are.  

It could still be a "seems like" kind of thing; I feel better to acknowledge the feeling.  To take a moment and pause and acknowledge change as it is and how I am currently experiencing it, there is an odd segment of calm in the midst of the turbulence.  

A time to gain, a time to lose/ A time to rend, a time to sow/ A time for love, a time for hate/ A time for peace, I swear it's not too late

Sometimes we get our sea-legs again, remember how to walk with respect to the waves as the boat floats on.  Other times, we have to find something steady to hold on to for a while longer.  And sometimes, the storm stops as abruptly as it began, leaving folks wary and damp but also steady again.  

We weather the season.  We acknowledge the weight.  We move to the next season.  

Turn.  Turn.  Turn.

Processing in the Pool, Health Insurance Grieving

I went lap swimming the other day to clear my thoughts.  I find I leave the pool a more whole person than when I entered it.  

I had not had the chance to swim for a couple weeks--the hardest part of working out is getting to the gym.  Packing my swim bag, getting in the car, finding a locker, wrestling with my swim cap, and the uncertainty of knowing whether there would be an open lane when I arrived, it felt like too much work when my mind was already overloaded.  

But that first dive in, the shock of the cold water everywhere at once, my mind can only be present where I am, if only for a moment.  And then I could count the lengths, deciding what I wanted to do for my next set.  

Other thoughts meander in and out as I circle back once again and again as I swim the seventy-one lengths to meet my mile.  Occasionally, the count slips and I spend a whole length or two attempting to remember which one I was on, passing the time very effectively as I let my body complete the muscle memory circuit, one hand reaching and then the other, legs independent of all else in continuous motion, breathing timed within the stroke for optimum efficiency.  

When an idea pops up that needs more attention, though, it stays as long as it needs to.  

I have run through many hypothetical situations, how I would have wanted to respond better in a past situation or creating a scenario and playing it out in my mind as a potential future event.  I have also used the space to organize the scattered ideas and emotions of a particular event to make sense of them, to find the words I needed to articulate something murky or clouded by other factors.  

I always leave the pool a more whole person than when I entered it.  

There are a number of concerns that required sifting in this latest swim.  

• A patient and I had had a misunderstanding between us, and I needed to sort out how to let that go, owning my role in the situation without owning her reaction and the guilt that implies.  
• I recently had my first experience calling a family member to tell them their loved one had passed.  I knew that this ten-minute conversation was a pivoting point in their life and felt the gravity of that.
• We are in a season of change:  so many people I know are in a state of flux right now, where there is significant shifting and upheaval and uncertainty.  
• As part of that season, Andy and I are sorting out our plan forward from here, attempting to allow some space for connections to happen organically.  We are also getting a better grounding on what our basic needs are, drawing a fence around where we want to restructure, simplify, and focus.  
• And most importantly, I am investigating different health insurance options.  

Regrettably, I have a lot of experience sorting through my major medication plays out in these arenas.  I would be so happy to be wrong somewhere; being right has been both validating and soul-crushing at the same time.  Yet, I still have to ask questions.  I am grateful that I've mostly been met with persons taking my questions seriously, that I have not been given a "well, just read the plan," with an implied "and stop overreacting."  So far, I am met with sympathy but not solutions--it's too early yet.  

Somewhere around lap twenty, my brain went:  "The US healthcare system is normalized extortion."  I nearly stopped mid-stroke.  If a medication costs ten dollars, I'll pay it; if it costs a thousand dollars, I will find a way to pay it.  Nowhere else in the world do these medications cost the amount we pay here, where we as a collective pay far more for healthcare for poorer outcomes than the rest of the industrialized world (source, source, source, source, all just from a quick search).  On an individual level, we know that we have to plan, that we will find what the maximum out-of-pocket is by March or April.  There are many plans that have a max out-of-pocket amount higher than what can legally be deposited tax-free into an HSA ($7,300 for a family plan), meaning that we cannot even break even.  

Oh, and the bones in our mouths are on a different scale altogether, because mouth-bones are a luxury, I guess.  

So, my heart was engaged in two directions that stretch it, between exercise and grieving.  It is an injustice.  And it is real.  And it is exhausting.  The problem does not go away-- a chronic illness existing within a systemic problem is not a great combination.  Which means that I have talked about this before and will do so again.  The wound cannot close; and this is a wound particularly real to me at the moment.

I take some comfort that I'm doing the right things--I'm investigating in different arenas, to identify our best options and understand them in their entirety before moving forward.  At the same time, I mourn its necessity.  I feel myself reverting back to survival tactics that have gotten me through other crises in my life, which doesn't feel great and mentally puts me in those spaces again.  

There is tension in these processing spaces, knowing the value of creating a space where that is possible but also acknowledging the anxiety of uncomfortable truths and the burden of setting up the ingredients for such a space.  A swinging pendulum of processing and distraction and back again, allowing it to swing freely without forcing it to one slide.  

Flowing with the stroke.  Arms and breaths timed together.  Only able to be present and immersed in the moment.  Everything can wait until the other side of the locker room, if only for now.