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This week started out with such promise, then came the descent.

Oscar went rogue in a way that required a more-than-customary degree of medical intervention. 3 days into this hospital stay, I still have no definitive plan for the immediate future. It’s clear I’ll need surgery, but not precisely when, where, or to what extent the procedure will reach.

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Double Dose of Dahlias

As ever, there are several considerations at play which impact my course of treatment; my recurring flares have not responded to the biologic intervention and are currently only quelled with steroids. This is problematic because apart from making me feel awful in a whole host of ways, steroids have a raft of nasty side effects [high blood pressure, bone loss, impaired endocrine function] rendering them untenable as a long term treatment. Moreover due to their tendency to cause excessive bleeding problems and delay healing substantially they are troublesome in terms of surgical intercession.

There’s a lot of uncertainty around how to proceed, and coupled with the fact that I Am Not A Patient Man, I also find it difficult to maintain my emotional equilibrium in the face of ongoing ambiguity. Plus, I might have to get a doo doo bag. For THREE MONTHS.

I feel very fortunate to have a supportive group of people taking as much care of me as I will let them. I’ve had well-wishers, and foot rubbers. Clothes-bringers and entertainment providers. Flowers and conversation have arrived at beneficial intervals, and I am moved again at the generosity of my selected family and friends.

I have also had a compassionate troop of caregivers here at Providence who have only reinforced my admiration for this health system where I am fortunate enough to work; to underscore that it is well-founded and grows by degrees. Their obvious interest in my physical well-being is complemented by an equally apparent desire to comfort me emotionally. Lastly there is a manifest willingness to patiently communicate with me about my concerns and questions that lacks any hint of exasperation or condescension that stays in O(ther) (H)ospitals (S)adly (U)pheld*

I’m trying to keep busy and positive, and to rest as much as I can. I am hoping that though this week took a dive, I’ll rebound like the little rubber bouncy ball I really am inside. A swirly purple glitter one.

 

*That was a stretch, but I am on morphine, so it’ll have to do.

 

noun

kän(t)-stər-ˈnā-shən

a feeling of surprise, confusion or disappointment

Say what?

Say what?

I am perfectly accustomed to the notion that things will not always go as I plan. If nothing in life is certain but death and taxes, I will make the claim that disappointment is the death of expectation; the taxation of hope.

I find myself generally able to take this phenomenon in stride. I am familiar with it, as are most folk, and lamenting the fact has never once alleviated its effects. For how we make God laugh when we plan…

Yet at certain times I am especially confused by the way things unfold counter to my expectation. Instances where all indications point to a particular course that simply never manifests.

And I am full-well aware there is no ready answer nor effective tonic. To strive is to risk, to hope is to hazard. These are the toll of possibility, and though the price may seem high at times, still better it is to yield the cost than lay stake instead to complacence.

So, I’ll sip my tea and feel puzzled. When it is gone, I will put my aimless wondering away.

A couple of months ago now I tried to ride the KRT with limited success. The trail surface was much more suited to a mountain bike than the hybrid Trek I was riding.

At the time I remembered thinking it might be a better spot for running than riding, and yesterday I set out to test that theory.

When I got to the trailhead, I noticed immediately how WINDY it was. No surprise in the gorge, I was delighted to see a group of kiteboarders out on the river. I scrambled down through the beach brambles and took a few shots of the action.

Let's Go Fly A Kite

Let’s Go Fly A Kite

I knew I wanted to get a 10 mile round trip in. My recent acquisition of a fitbit has me even more conscious than usual of making sure I get in a long haul over the weekends. I strapped on my daypack and camera and headed out the dusty trail.

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Not that it was really dusty. Mostly the trail is well maintained gravel, until it becomes rougher, rockier terrain. The weather was outstanding; mild, sunny, and just a tiny bit crisp. Perfect fall conditions.IMG_0848

And there were nice colors just starting to peek through here and there as well. The view back toward Hood was quite nice, once I got turned around that way.

The trail was only busy in areas where people were fishing and once a pair of cyclists; otherwise I had the place all to myself.

I moved slow on the way in, pausing frequently to take photos – most of which did not turn out that well due to the harsh light conditions – and listening to Catch-22 on audiobook. Once I’d gotten to my turnaround point, I was hungry enough my primary concern was getting back to the car quickly and feeding myself something tasty for all my efforts.IMG_0838

While it had taken about 2 hours to get the 5 miles in at a loping pace with frequent photo breaks, the return trip took just about an hour at a brisk cross-country jogging pace. I felt a little beat up pounding over the uneven surface, and nearly tripped a few times over particularly recalcitrant rocks, but kept my pace and my feet till the end.

 

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“The Trees are about to show us how lovely it is to let the dead things go.” Maya Elious

 

At the turning of the season, may the fading light be a reminder how precious it is. 

At the turning of the season let the cool of the night recollect the value of warmth.

At the turning of the season grant the ended span of life such that life may reemerge.

At the turning of the season yield to the changes that will create the world anew.

Do all this; and fall.

It’s been a rough couple weeks. Starting to get my equilibrium back and feel like things are on track. In the meantime, I finally invested in the DSLR I have been promising myself for years. I got a Canon EOS Rebel T3 and I am more or less delighted with McGavin.* As much – possibly more – functionality as I can possibly utilize given my skill level, and a body style which allows the addition of more or less any other components Canon makes with little more than the twist of the wrist.

So, that’s been filling my time of late. Toying with the idea of taking a photography class. It’d probably be worthwhile, since I know there are features and nuances I am not taking advantage of that I’d enjoy.

Meanwhile, some featured efforts…

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Hood From Lolo Pass

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Salt Creek Falls in Willamette Pass

 

 

*Shooter. Eh? EH?! 

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These are the stories I will tell myself until they are true.

[hez-i-tey-shuh n]

noun

  1. The act of hesitating; a delay due to uncertainty of mind or fear: His hesitation cost him the championship.
  2. A state of doubt or uncertainty.
  3. A halting or faltering in speech.
Which Way When

Which Way When

I don’t generally suffer from indecision. Even if my choices aren’t always wise, I make them with gusto. It is remarkable then, when I feel unable to proceed apace with a clear notion of what my chosen course should be. It is remarkable, now.

I am feeling well. I have for days now. It has literally been more than half a year since that was true. When the character of my flares first changed from being a difficult few days each month to a near-constant circumstance of life, so did my attitude about my illness. Where once there had been an unwarranted assurance that I had rounded a corner and was surely free of a recurrence of such intense symptoms, there instead lingered a conviction that I would never again feel hale.

Post diagnosis I experienced a resurgence of optimism that having identified positively what was actually wrong it would be only a matter of taking appropriate action to make everything right.  Nearly two months later, no substantial change in my condition had begun to erode my confidence in that supposition.

About the middle of last week, I started to feel notably less unwell. By Saturday my guts had reached a degree of quiescence not experienced in months. It has persisted and is still the case. At this pass, I have no clear opinion about what might have provided me with this respite.

Notable is the addition of a new piece to my regimen at the beginning of last week based on some inductive reasoning and research about the mechanisms of my disease. It’s a minor change, easy to maintain along with other things I have been doing for a long time that while not curative, are certainly useful and help me feel better overall. Considering this, any effects should persist as long as I continue the routine.

It is also true that some of the medications I am taking for my condition take some time to reach critical mass in the system and achieve efficacy. It’s entirely possible they are finally asserting their influence and the results will also be ongoing as a result.

Yet I am also forced to acknowledge that occasionally, I just spontaneously feel better for no apparent reason. This is of course the most depressing possibility as I have no control over, ability to predict, or capacity to produce this result.

That realization has left me with a bit of an emotional hangover and an appreciable residue over any part of my life where might linger uncertainty. Instances in which I might not have all the information suddenly loom and cause disquiet. Circumstances that might otherwise barely capture my notice take on huge and ominous import.

It is as though the all the physical distress of the long lead up to now grew to occupy space suddenly come vacant. To fill the yawning void, in rush uncertainty, worry, and their fickle sister doubt. I think it is now my task to usher them out and introduce patience, faith, and assurance that whatever may pass I am capable of facing it bravely; even if I require a measured pause, before.

I am feeling lonely. I realize that this might be amplified by a variety of factors. Today, for example, I was moved to tears listening to reggae. Seems sufficient evidence I might be particularly emotional, just now.

There are lots of perfectly valid reasons this could be so:

  1. Oscar has been less-than-totally quiescent. The grumbling and churning has woken me several times in the last few days.
  2. I have another, newly discovered and utterly revolting health problem rearing its head.
  3. In part because of items 1 & 2 I am not getting even my customary level of not enough sleep.
  4. I am in the final stages of tapering off the steroids I have been taking for over three months and the hormonal shift is taking a toll in the form of constant headaches, joint pain, fatigue, and general malaise.
  5. Louise (my remaining ovary) is doing her monthly song and dance.
  6. I have been spending a greater than usual amount of time alone.

 

And, if I am completely honest, I cannot discount the fundamental, embarrassing, and irresistible truth that it’s been just long enough since I got laid that all of this is much more pressing thereby. So far, I’ve managed to avoid taking any hasty measures to remedy this*, but I know that feeling lonesome is amplified because of it and that my resolve to make careful choices with long-term potential in mind seems less important by the day. Usually, I try to distract myself with affection from other sources. While less potent, it certainly helps take the edge off.

Add to that the inherent summertime challenge. People are busy; there are so many options it can be difficult to get on the schedule. Since I am also contending with Oscar and Louise, it can be hard to plan time with people who might offer a different kind of company than my body can afford. It’s also the case that in an effort not to languish in my illness or recurrent bouts of self-pity and take advantage of what has been very favorable weather for a variety of adventures, I have tried to keep busy with things I enjoy. By and large, the hiking, running, camping and general larking about has been very good for me. However, the fact is I have been doing all of this by myself.

Cast in the best possible light, the idea is that I shouldn’t feel the need to wait around for someone else to come along and validate my plans. And while I can and do often have a perfectly lovely time on my own, I think I’ve fallen into the habit of assuming I must do everything alone. I can hardly recall the last time it occurred to me to ask someone else if they’d like to join me on an impromptu beach trip, hike, run or any other activity I employ to keep myself entertained.

In a less favorable light, I acknowledge my tendency to isolate myself when I am in pain; physical or emotional. I have tried to make a concerted effort to reach out and ask for help and support, and whenever I do, I receive it from multiple quarters and with gratifying speed and enthusiasm. The trap, of course, is that the more I need to reach out, the less inclined I am to do so. The more overwhelmed I feel the more I want to run away toward the horizon with the sappiest music I can find** and sing at the top of my voice while sobbing, or crawl into bed at 2:45 p.m. and not get back out until I next have to present myself at my job.

This doesn’t have a ready solution, in the sense that the protocol to remedy things is less than totally straightforward. I think too, that occasionally doing any of this is fine. It becomes troubling only after I notice myself tilting into a pattern where the only person I see outside the office for days on end is my equally hermit-like housemate as we pass each other in the kitchen executing a run for snacks to take back to our respective ends of the house.

So. What remedies? Other people, rest, hugs and kisses. Guess it’s time to get my prescription filled***.

 

* Really, shirtless selfies aren’t that bad, right?

**Customarily not reggae.

***That’s what she said.

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