Red-tailed Hawks

A pair of Red-tailed Hawks lives on the ridge by the sheep.
I see them often, sailing the currents.
Working outside, the quiet cadence of labor blends with the wind, the buzzing, the bird song, and the cry of the hawks.
Dropping the noise of mankind, I slip into their world.

I never saw the hawks while I was sick.
I feared they had died, fallen to accident, age, or poison.
Reason told me it was I who had changed.
Not dwelling in quiet labor, I did the necessities, hurrying home.
Yet I watched the sky and listened.

This year they have returned to my world, or I to theirs.
As their absence ate at my wellbeing, their presence assures me.
No reason, really, just that they are there, magnificent.

©Maria Amodei

Royalty

They are royalty, the plants of my ruby mine. I water them, weed them, and provide support for their bounty. I forgive all but the most egregious acts of imperialism as they fret at confinement, testing the boundaries of their kingdom. Each July I am bedazzled by their thousands of ruby fruits, brilliant in the sun, luscious on the tongue. An annual coronation, the ceremony and surfeit worthy of the richest kingdom.

Happy Anniversary

Today was a good day.  I have a fair percentage of good days recently.  My dose reduction in February tamped down the physical side effects.  More importantly the reduction was enough to calm the raging depression that this drug induces in me.  I’m happy, safe, and reasonable. 

End of April I had the test to determine if this lower dose is keeping me in remission.  The equipment that runs this test can also run COVID tests, so there was quite a delay in getting results.  During which time I fretted, worried I might have to change drugs again.  I can’t go back to the higher dose on this drug, not safely.  Yesterday I got the call.  My numbers have gone up, but not so far as to be clear that the lower dose is not doing the job.  I certainly would have preferred holding steady, or a reduction.  A solid result to assure me that the leukemia will remain in remission at this dose so I can keep this medication long term.  But I’m good till the end of July.  I’ll take it. 

A year ago today I was setting up to leave for the Nevermoor trial.  I’d been to the doctor earlier as I’d not been feeling well, figured I had Lymes again.  My doctor called me that evening, called home and cell and left messages telling me to go to the emergency room.  I needed to finish chores, feed dogs, and take a shower before I went in.  I expected to be home in a couple hours, instead I ended up in an ambulance bound to Boston.  It was a very long night.

Despite being fortunate to have a leukemia that can be controlled with drugs, I am not one of the folks who tolerate the drugs well.  It has been a long year.  I’d have liked to be further along by now in working out the difficulties with the meds, but last summer I could barely get myself to walk out to the raspberry patch to pick a few for my cereal.  This spring I worked to put the neglected patch back in order.  Last summer I could barely set a couple lines of net fence, stopping to let my heart stop pounding a couple times per roll.  Wednesday I moved 6 rolls to set the ewes on pasture.  Last summer I depended on friends helping with the simplest of tasks.  This year I can do the work, though I’ve cut my stock and dog numbers to adapt. 

Today was a good day.  I did a lot today, which stood in clear contrast to where I was last year.  They say you should not look back.  Looking back today I saw how far I have come.

Season Changes

I’ve noticed that season changes bring reflection on where I am, where I was last year, and where I’m going.  Perhaps I have always done this, but it is a richer experience since my leukemia diagnosis last May.  Each new season changes the physical world, marking the passage of time in a way I cannot deflect.  My difficulty tolerating the medication coupled with my inborn impatience makes these reminders unwelcome.  

Anticipation is powerful, whether for good or bad outcomes.  Optimism grows with anticipation of joy.  My optimism rides on a realistic forecast of when I expect to have side effects under control.  Why have a goal at all?  For me figuring out a reasonable timeline based on what I know gives me something to work towards.   Having an identified schedule gives the process more emotional credibility, carries it past wishful thinking.  I had set a plan for the beginning of winter 2019, very conservative at the outset, giving me room to succeed on a path where I have limited personal control.  I’ve passed that deadline.  I had thought to reschedule to May.  A dose reduction in February made spring seem realistic.  But some persistent problems and delays in access to medical care during the pandemic are pushing that out.  I don’t have enough information right now to come up with a new target for my anticipation.  I’m working on that, always happier with steps I can take.  

I’m not the only one to put plans on hold during the pandemic shut down.  It is so very hard to let go of plans we anticipated, joy and success in the future.  The unknown conclusion of this shut down makes this so much more difficult.  When will we be able to go out? Will we get the virus?  Will we still have jobs?  Will we be okay?  Will our friends and family all be with us still?  How much suffering will we witness even if it stays outside our own circle?   Big problems foisted on us by a powerful natural world and a significant population of ignorant and self-serving people, neither of which we can directly control.

The best I can do with longer term plans this spring is keep thinking on them until such time as they again become relevant.  So I’m making a collection of little plans, from simple preparations for lambing through finishing the front of the shop and bedroom renovations.  I may not complete or even get to the bigger projects, but I’ve learned to serenely relegate unnecessary tasks to the fuck it list.  Meanwhile the work and anticipation of the outcomes provide a welcome distraction, something to point anticipation in the right direction.  I’m working on Drum’s shed and trying to get John Henry trained up.  Should the trial season resume then I’ll pull my trial plans out of the closet.  Given that I sat out most of last year I will not focus on qualifying for nationals.  I plan to put aside my disappointment at having lost the trial season and nationals the only way I know how, replacing them with new plans and goals.  I plan to honor social distancing, playing my part both personally and as an example. 

May we all find new ways to anticipate each morning.

Go with your gut

Your gut is for eating, not thinking.

The “go with your gut” mantra glorifies emotional decisions.  Go with your gut gives you permission to be delightfully frivolous.  It also gives you permission to be selfish, fearful, and bigoted.  It allows you to blame everyone but yourself.  Go with your gut adds imagined credibility to arguments only because they reinforce your current view of the world.  It leaves you vulnerable to any speaker clever in the use of emotional hooks.  Go with your gut allows you to read past the holes in their argument, then fight to hold onto the conclusion all the more frantically when you are trying to stand on the pitted ground of imagined truths.

Sure there are places to go with your gut.  It is great for picking a puppy, choosing a color for your house, deciding what flavor of ice cream to enjoy. 

If the decision will have a serious impact on your life, the lives of loved ones, or the lives of any other living beings, please take the time to research the facts.  Please take the time to consider whether you may be discounting the validity of data because it you find that data uncomfortable.  Take the time to consider where you may be accepting of data because you want it to be true.

Thank you.

Thank you, thank you all.  Thank you to the governors declaring a state of emergency so their states can better support the efforts to manage this pandemic.  Thank you to the mayors and local governments working hard to provide the necessary leadership and resources to get us through this crisis.  Thank you to the businesses setting up for staff to work from home.  Thank you to the companies offering free software and services to help organizations setup to function remotely.  Thank you to organizations cancelling events, often at great cost.   Thank you to the many individuals who are staying home, either because they understand the importance of slowing the transmission of this virus early, or because despite being unsure they are willing to make some personal sacrifice to save lives of people they have never met.  Thank you, thank you, thank you to the health care workers and scientists who are in overdrive trying to manage this public health crisis.

Every time I hear another closing, cancellation, state of emergency, individual saying they’ve decided to forego events or stay home altogether it reminds me that the human race is mostly comprised of decent people, capable people, and people who care.  In the vacuum of federal leadership there has been a swell of leadership from states, businesses, local governments, schools, churches, clubs, and from individuals who are determined to do the right thing.  People are awesome.  Thank you.

Less

Another dose reduction on my med starting today. I am moving to a dose that does not have the data behind it as far as effectiveness. Not that there is evidence it won't work, but not enough data to show that it will. I got a baseline test today, and will be retested in a couple months to be sure it is continuing to keep me in remission.

My doctor was reluctant, more inclined to move me to another drug to avoid side effects or treat the side effects separately. He is appropriately focused on the best option for keeping my leukemia in remission.

I, on the other hand, am making quality of life decisions. In many ways my current drug is a good match. But there are some remaining side effects that need to be reduced. I'm game to make some data and see if this works. I've taken greater risks for the thrill of living.

Reality

My cancer will not kill me.  This is not because of my optimism, determination or mental strength.  It is not because people prayed for me to a god who apparently makes choices based on popularity.  I will survive because I was fortunate enough to get this particular cancer at a time when science has developed extremely effective treatments.  I will survive because I have sufficient health insurance to pay for the treatment.  I’m not a warrior fighting cancer.  I’m lucky.

We want simple answers.  Life should be merely a matter of optimism, or trying harder, or determination, or being more kind.  We embrace slogans about good outcomes being a matter of decision, as if we're all at the same place.  Instead reality is complex, as much a matter of luck and circumstance as one’s ability to apply whatever virtues they may have.  The mental and emotional squalor of reality is not vulnerable to bumper sticker slogans.  This is not a Hallmark movie. 

Simplistic positivity belittles the magnitude of problems in any one individual's life.  “You’ve got this” in response to a personal crisis is an insult to the complexity of our lives, either naïve or patronizing.  A friend facing disease, a personal loss, or a financial crisis may not be able to overcome. 

Let people have their bad times.  No amount of fluency in feel good slogans or personal experience with your own problems qualifies you to decide when someone else should move on to acceptance or “snap out of it”.  Denying bad times is denying reality.  Some days I just look at reality and let it sink in.  Not a happy place, but that's the best I'm getting out of those days.  And sometimes those dark days help me make decisions that are ultimately helpful (or not).

I can usually conjure up some anger, which helps.  There is a line in Don Quixote, sung by Aldonza:  "Can't you see what your gentle insanities do to me?  Rob me of anger and give me despair."  Anger works for me, but to believe someone else need only summon fury to get them motivated is disrespectful to the individual that they are.

I've had people to rail to as well, precious people who are willing to accept me at my worst.  The word fuck is key to my survival.  As in "Fuck all this happy 'You got this' shit."  And "fuck this situation."  I think a lot of the happy mantras are based on accepting your current situation.  Fuck that.

Not accepting the role of courageous warrior with a Teflon smile does not mean I’m not coping with my reality.  Indeed accepting that role, while more socially comfortable for people interacting with me, would mean I’m not coping with my situation.  I’d be living a lie, trying to build my future on an imaginary present.  Being frustrated, tired, angry, and depressed are as much a part of my life as hope, courage, and thoroughly appreciating the occasional great day.   

Accepting A New Normal

The fact that I’m alive speaks to my acceptance of the reality of my present condition.  Accepting the reality of now does not mean accepting the inevitability of an unchanged future.

I am quite capable of discerning the changes time has wrought from the changes due to illness, or in my case the concomitant medications.  I know my own body and my own mind.  If you have struggled with low energy or other physical issues those are your challenges and I wish you success in dealing with them.  That does not mean that I should expect or accept the same problems in myself.

You have no idea what this new normal you are advocating for entails.  I have coped with a variety of symptoms that interfered with my ability to function in life.  The worst of these are much reduced now, precisely because I did not accept them as my new normal and instead vigorously pursued solutions.  I am not done yet.  Fuck acceptance.