339 // I Don’t Want to Go Back

This morning is adhering a lot closer to plan than the last few have. I’m up before the sun, my favorite time of day as long as I get to spend it sipping coffee and reading in bed next to a sunny window rather than stumbling through the beginning of the workday routine, and from here things are only looking up. I have nowhere to be and nothing much at all I have to do.

These days, these not quite work days but not quite weekends, are quickly becoming a large source of peace and fulfillment for me. I’m concerned about how hard it’s going to be to return to a full-time work schedule after the turn of the new year, and even more so after the corona virus vaccine becomes widely available and distributed.

The pandemic has really put into focus what matters, and at the top of that list is time. It’s become clear how much of it I have been giving up, how much we’ve all been giving up. Forty hours—and often more!—a week spent doing what? I love my job, but it isn’t for me. I don’t do it because I love it; I do it to survive.

I have to give up my life in order to live? It’s all so contradictory, depressing, and, the longer the pandemic wears on, infuriating.

I want the pandemic to end, but I do hope life doesn’t just go back to normal after it’s safe to leave our homes and be within six feet of each other again. I don’t want to go back to working so many hours a week. I don’t want to go back to feeling guilty for staying home when I’m sick. I don’t want to go back to long meetings, and crowded offices, and impossible expectations.

Sadly, I suspect everything in the workplace will go back to the way it was and faster than I can adjust physically or emotionally. People are just too happy with what is familiar even if a little change, uncomfortable adjustment, and imagination is all it takes to give a world with a little more balance, peace, and, most importantly, time.

338 // A Minor Mistake

Yesterday I was grateful for modern medicine, today I loath the entire American health care industry.

Long story short, I made a minor mistake that resulted in needing my medication replaced, not refilled, but my insurance provider refused. They admitted that the mistake was both understandable and commonplace, but instead of having a simple and compassionate solution ready; I was directed back and forth from department to department and between them and the drug company again and again and again.

The process was stressful and disappointing at every level. I was left feeling incompetent, completely alone, and terrified of what a missed dose might mean.

The worst part of any illness isn’t the illness itself but dealing with pharmacies, drug companies, insurance providers, and all their bureaucratic roadblocks and the problem is infinitely worse that illness and consequently the bureaucratic roadblocks are chronic.

The good news is that within this cruel and capitalist system there are a few good people and between my doctor and the nurse ambassador with the drug company I’ve been reassured I will probably be okay and that I am not, in fact, the world’s number one failure.

So, so much for a day that belonged to me. I spent the rest of the afternoon and evening trying to destress and salvage some self-esteem. Ordering a pizza with my favorite toppings, watching old episodes of Veep, and knowing I still have tomorrow to myself helps a lot. Today wasn’t a good one, but it’s already in the past and soon it will join every other bad day I’ve ever had as a distant and dim memory, something to laugh about or repress forever.

337 // The Good News

The only good thing about having to work during a pandemic is at least the schedule is light. The first half of the week was hard, but in order to minimize the number of people in the office, everyone’s time is split and Wednesday has become my new Friday. I only have to get through midday and the second half is all mine. Hours to fill as I please, or as my energy or anxieties will allow, though there is more hope for me this week than in many weeks past.

To be honest, I’ve been reluctant to write here lately. For so long now there has been nothing but bad news and worse news. This year, my year, like the year many of you are having too, has turned out to be one of the worst in recent, if not complete, memory and for many more reasons than the collective COVID one.

It’s no secret chronic illness has been kicking my ass and with nowhere to go and nothing to do but work and wallow, there hasn’t been much worth sharing or saying, until today. Today I feel good. I have been feeling good, and I want to share the good news with you now.

Some weeks ago I started a new medication and treatment plan and for the first time in many, many months pain, fatigue, and distress are no longer defining every waking moment of my life. For the first time in many, many months, I recognize myself in the mirror.

What’s funny is, this year has been so hard on me that even speaking that good news scares me. I’m worried I’m wrong or that the improvement was only temporary, a tease, another trick of 2020, but some time has passed now, enough to allow a sense of optimism to creep in.

I can imagine a life that is more than work and sleep again. I’ve been reading constantly and thinking more and more of writing again. I’m excited at the prospect of making something of this last month, even if all I do is spend it preparing for the new year. My expectations aren’t high. Being able to do anything at all is progress. I’m happy and hopeful again, and that is everything.

319 // Catching Up with Myself

For weeks, maybe months now, I’ve been longing for time to do nothing but what I want to do, even if that means doing nothing at all, and finally that day has arrived. The plan is to catch up on much-needed sleep, reading, journalling, doomscrolling, and more sleep.

The weather has taken a strange turn since this morning. The day started sunny and calm, but very quickly the wind began whipping around the house and dark clouds rolled in on it. I could hear trash cans, and furniture, and things blowing through surrounding yards and all day hoped the fences, trees, and power lines would hold upright.

Besides the cold creeping in through every hidden crack and failing seal and the eerie sounds waking me again and again from those much-needed naps, the winds passed with little more than threats and this evening we’ve returned to quiet and calm.

Inside I’m feeling far from peaceful though. Yesterday I spoke with my doctor and we are officially and finally changing course in my care. There are going to be new medications, new expectations, new hopes, and new norms to get used to—again. It’s a good thing really, because what I am doing isn’t working, but change is always scary.

So, in addition to resting, I’m processing what all of this might mean and how I feel about all of it. I’m working hard to practice acceptance, gratitude, and self-love. I’m forgiving my body and focusing my thoughts on how strong I have been through all of this. Moving forward I’ll have to keep being strong and that means gaining a new perspective. That means crawling out of this funk and finding the blue sky, even if I have to wait for a few clouds to pass first.

314 // From the Warmth and Comfort of My Couch

Winter has returned today with gloomy skies, steep temperature drops, and fat snowflakes falling off and on throughout the day. Thankfully, I’m working from home and get to watch this weather roll in from the warmth and comfort of my couch.

For the next three days, I’ll be attending a big and important virtual conference for work, and my district has trusted me to bring everything I’ve learned back to my coworkers. I’m excited about the opportunity and honored by the trust but I can’t help feeling a little bummed that the event isn’t being held in person, that I am not staying in a hotel somewhere in a city I’ve never been, enjoying a continental breakfast and networking in the lobby.

Still, there were some very cool moments, including the chance to hear animal behavior expert and autism activist Temple Grandin speak this morning! She is such an interesting and insightful speaker, and I feel ashamed not to have heard more of her talks until now. I fully intend to scour the internet for every video I can find of her. Might re-watch the film based on her life too. Might even buy her book!

Still, not everything has been good today. That great weight that had previously been lifted from my chest has already been loaded back on. My workplace has reversed position and asked that staff members return to work as early as this week.

At the same time, I’m also reading reports that my state is experiencing an uncontrolled spread of the novel coronavirus. I had hoped that management would allow us all some time away to take the precautions we needed and keep ourselves and our loved ones safe, but I guess the priorities have changed.

This all leaves me feeling very…angry. I simply can’t see any reason why we have to come back in so quickly. The students are staying home and the district has agreed to pay us through the next month. So, between the risk of contracting the virus and the benefit of having us all at home (including the chance to disinfect our work areas), I just don’t understand the reasoning.

Underneath that anger, there is fear. Even by the districts own metrics it isn’t safe for us to be at work and without knowing how my coworkers are spending their personal time or what precautions they are—or are not—taking I don’t feel that simply wearing masks, using hand sanitizer, doing our best to maintain a six feet of distance between us will keep me safe.

But what choices do I have?

313 // Moving Against the Wind

The exertions of the last few days to weeks have finally caught up with me. Every muscle above my waist is sore, and I can’t seem to find the energy for even the most basic items on my to-do list. A can of Redbull and a little music are helping at the moment, and knowing that for the next three days I get to work from home and by midweek my time will be all mine for at least the next three weeks.

In the meantime, I’m simply doing my best and trying hard to let that be enough. It hasn’t been easy though. Everything I touch or try to do today seems to be going wrong, and I’m falling into negative thought patterns too easily. Instead of this mistake being normal, understandable, forgivable, I’m seeing every misstep as a confirmation of some inherent badness in me.

I’m holding these false narratives at bay, for now, but guilt and low self-esteem are threatening like dark clouds gathering on the horizon. I’ve just got to keep moving against the wind and I should make it to the end of the day, but if I stop for even a moment to look behind I know the blue skies will be overtaken and I’ll be engulfed in gloom and doom until morning.

312 // Something for Me

Even though it’s the weekend, and I’d be off from work anyway, it still feels like the first day of my second quarantine which is feeling more and more like a kind of vacation from all those things that have been terrifying and stressing me so much lately. I woke up light, happy, and feeling more like myself than I have felt in a very long time.

Today was also first time in weeks—months maybe—that I have been able get out of the house and do something for me. Some much needed shopping was done and some shopping that was just for fun. I enjoyed some of it very much, and some of it not at all, but I’m home now, feeling a little tired and very content.

In light of the recent rise in COVID cases I can’t help worrying over my little outing. I hoped the stores would be somewhat empty what with our local officials recommending we all take further precautions but it was quite the opposite out there. The stores were packed. Everyone was wearing their masks but social distancing was nearly impossible and the closeness of all those bodies, breathing all around me, made me feel very anxious. I don’t think I’ll be venturing out into the world again for a long time.

And anyway, too much of what little energy I have anymore is used up during these outings. The time for staying in, for making this house more like home, for resting, reflecting, and recuperating has arrived.

I’m starting right now, spending the evening on the couch wrapped in my comfiest blankets and watching President-elect Joe Biden and Vice President-elect Kamala Harris call for unity, peace, and healing throughout the country. It’s such a soothing and calming messages and gives me hope that even if compromises must be made over the next four years they will be made in an effort to move us all forward together because the truth is we are all Americans and so many of us have been left behind in so many ways and on both sides of the political aisle.

311 // Quarantine: Part Deux

A great weight has been lifted from my chest this week. Yesterday the powers that be announced that the school district I work for is finally, finally, moving to 100% remote learning which means I will get to stay home, get the rest I so desperately need, and avoid contracting the novel coronavirus from my often careless coworkers.

I am being asked to return to work in just over three weeks to continue training new classes of employees but with cases rising as fast as they are and the peak of cold and flu season approaching I will make the decision whether I return to work based on the case counts and my health at the time rather than what my superiors would like me to do. I just can’t keep on risking myself and my family for work I know can wait.

A weight of another kind is lifting too as the ballots go on being counted and this country moves closer and closer to an official resolution to the 2020 Presidential Election. The writing is already on the wall and the sitting President’s rants and legal challenges are only postponing the inevitable. I for one am relieved and proud, though still quite disappointed, in the work it took and more motivated than ever to do my part in that work moving forward.

For now though, there will be rest, on all levels and in as many ways as I can think of. I’m going to sleep more, of course, but I’m also going to rest my mind too and take a break from the stress and intensity of cable news and social media.

I learned a few lessons during my first quarantine last Spring and this time I’m a little more clear on what it will be like, what will be required of me, what I can do, and what I don’t have to do. I expect to enjoy this time a whole lot more and to focus on what really matters—my mental and physical health only.

297 // Gloomy Friday

It’s a cold and gloomy day here along the Front Range Urban Corridor. We woke falling sleet and thick layers of ice on our cars and walkways, and as the sun rose we realized there would be very little improvement in the way of warmth and blue skies would likely not make an appearance. So much for a happy Friday.

As for me, things have improved in what ways it can since the last time I posted here. In some ways they are worse too. Every day brings new challenges and every day we discover new ways to be strong, or to fail. I suppose all life’s major changes and tragedies follow this pattern, and perhaps the peaks and valleys never will quite flatten out again, but only shrink toward one another.

Getting back to work has helped some, and being with my wife makes it easier, but even through the laughter and love, emotions of pain, stress, fear, and helplessness continue to be the predominate. My family is in an upheaval and we’re being forced to take not only our circumstances but one another on a day by day basis.

My health has not improved overall either, but the time for answers either way is fast approaching. More tests and a new plan are close enough to give me both hope and anxiety. I’m worried I’ll be told something else entirely from my original diagnosis is wrong, or, worst of all, I’ll be told nothing is wrong at all. I’m worried the answers will come too fast and I’m worried that I will have to wait, and suffer, just a little longer.

Still, I’m grateful for so much. I’m grateful for the family I have and for small victories. I’m grateful to be alive, to fight, to support the people I love and to receive support too. I’m grateful for what I can give, even if all I wish anymore is that I could give so much more.

What I’m learning though is that gratitude is not the same as happiness. It’s only a small part. I need more than gratitude and I’m at a loss as to what that thing is or how to find it right now.

285 // A Monstrous Storm

I can promise you I am not being dramatic when I say that in the past few days my whole world has been very much turned upside down in some of the worst ways imaginable.

People I love have been hurt and are hurting and I’ve been living in an alternating state of shock, anger, anxiety, guilty sadness, and helplessness for some days now. These “some days” have stretched for an eternity and moving forward from here in any emotional or temporally sense is a foreign, unimaginable, and impossible notion.

It’s as if I am existing at the center of a raging storm that, while it’s only just gathered, has managed to gain monstrous shape, speed, and strength. Some small calm can still be found in my very immediate surroundings, but the winds are shifting unpredictably and I feel if I do not shift quickly with or in response to them and the needs of those I love the storm will grow beyond my control and I will be sucked in and blown away as well.

My suspicion is this sense of control is an illusion, and my efforts to maintain it are futile. There is worse and on the horizon and it will come whether I fight or fly. Part of me is already at work in the recesses of my mind to prepare for those hardships and heartbreaks.

And I keep wondering how much more we can all take? I’m trying not to make the surrounding storm all about me, but I am involved. I am affected and not from one direction or by one thing, but from all sides and on many levels. I’m hurting. I’m afraid. I’m lost. I’m so very lost…

My instincts tell me to pull away from writing, from this space, from everything I love, from all the things I do for me. I’d thought to write here only to announce an indefinite hiatus, but I’ve always been, always had to be, skeptical of my instincts. I hardly ever really want what’s good for me. My urges and impulses tend toward the self-destructive because—I believe—it is the simplest and most satisfying place to find control and satisfaction.

So, if my gut says pull away, I have to at least consider the idea that what I need most is the exact opposite: to lean in, to try harder, to give more. Self-expression, even these small and stale attempts, mean something very much to me and the way things are going I should probably cling to whatever I can call my own as much as possible.

There is another side of me that is offering alternative solutions to that sense of control: radical acceptance, incredible patience, and flexibility. Planning and expectation may be unreasonable undertakings in times such as these.

Each day, and whatever it offers, both good and for bad, may have to be taken on its own separate and alone from the day before. Hell, each emotion, thought, need, idea, and action may have to been received separate and alone from all previous and even from their cause.

I see no other way to cope. Time—both laid out behind and stretching out ahead—has become an overwhelming concept.

From here and for a very long time, there can only be now.