Category: Journal

The new week has finally begun and though I woke in a bad mood, wanting to stay home and forget all responsibilities and obligations, I’m doing a remarkable job of faking it until I, hopefully, make it. Being part of a team and knowing there are people who are counting on me to show up and produce good work means leaving my problems and poor attitude at the door.

And you know what, taking the time and making the effort to change my perspective really turned the whole day around. It wasn’t easy though, and I realize now why the practice of mediation and mindfulness is so important. I’ve been out of practice for weeks now and I am noticing that stepping outside of myself, grounding myself, or using my rational mind is getting harder and harder to do.

The good news is that even though this week’s schedule is full, there are plenty of people on my team to share the load this time. I have more downtime than I anticipated and on top of that I’d long decided to take a couple of days off at the end of the week. It won’t be near as hard as it looks on paper and knowing that alone makes the day all the brighter.

There are just 100 days left in the year. Of course, I know that nothing, not politically or personally, will get better when the clock strikes midnight on January 1st, 2021, but the elections will be over, we’ll have settled so much further into this new normal, we’ll be halfway through winter, and so many of the big decisions I have to yet to make will be behind me.

It’s not the new year that matters. That isn’t really the end I’m waiting for. I’m just looking forward to solutions and outcomes to the problems we face and a chance to overcome fresh problems altogether.

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What a weekend it has been! Friday night was the start of a great many birthday celebrations. Three of my siblings happen to have been born within the same 48 hour time frame, though many, many years apart. In addition, we have my father-in-law, and, a new addition to our family, my beautiful newborn baby niece.

Her father is one of the siblings celebrating his birthday this weekend too and I’m so happy that his greatest birthday wish finally came true—him and his daughter will share their special day for their whole lives.

Beyond the festivities and the bundle of joy joining our family, there has been heartbreak too. I was shocked, and then devastated, and then terrified by the news of Supreme Court Justice Ruth Bader Ginsburg’s passing. The world has been uncertain for a long time now and grows more uncertain as the days pass and our heroes pass away. I feel certain there is so much worse to come for us all on the horizon and hopeless, powerless, to stop any of it.

So, for now, I’m focusing on what I can control. I’m focusing on what I can wrap my head around—today and the week ahead—and even that mush feels enough to push me over the edge.

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Health-wise, today was an awful day. For one, I felt a lot worse. My pain and other symptoms were heightened and quite distressing. I’m so tired and run down I had to leave work early so I could to come home and simply sleep the afternoon away. After two additional hours rest, I still woke up with darkened eye circles and weakness in my muscles.

On top of that, I met with my doctor and though we still have no solutions; we are not quite out of options. I have a plan, but it’s a little terrifying. On one hand I have to come wean off one of my medications and see if I get better or worse. On the flip side, we are increasing another medication with the hope that it will work better. So a lot of hoping with very few certainties and a lot of real possibilities for things to go from bad to worse.

I feel close to giving up, or at least wanting to. I don’t know that giving up is even a choice or what that would like as an option going forward. I guess I can’t really give up, but I’m dangerously close to giving in—to grief, to anger, to loneliness and hopelessness.

I’m just tired of fighting. Talking myself up or back is a daily battle. Getting out of bed, getting dressed, going about my day, and doing my best to work, listen, connect, laugh, love, and be present is exhausting beyond words. How can I keep up this pace? How do I go on living, really living, not just being alive, while my body is falling and failing me every minute of every day?

I guess the only way is to see that, for one, my body is me, and two, I am not failing or falling at all. I am perhaps doing, giving, and expecting more than I should, but I am strong and I am getting through it the best anyone could if they were in my position.

It’s been helpful to remind myself that that none of this is my fault and more than that I don’t owe anyone anything because of it, let alone an apology. I’ve been feeling so sorry for every part of this, but what exactly am I sorry for? For impacting others? For asking “Will you help me?” For the proximity I place them to suffering and fragility by simply existing and being perceived?

Yes, I’m sorry for it all, but what is the point of friendship, of community, of caring, connection, and love if not to both experience and welcome such impact? I’ve got to stop feeling bad for living a real life that includes sad things, bad news, and hard choices. I have to not just welcome but expect that the people in my life will put up with me, will help me, will carry this pain with me willingly and enthusiastically.

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I’m feeling good today, which is utterly unexpected considering I had one of the worst nights in a long time. On top of my usual problems and pains, I woke early with a migraine that even total darkness and silence plus a combination of both Aleve and Tylenol would not touch.

I found myself staring at the ceiling before the sun was fully above the horizon and contemplating giving up, rising, and beginning whatever kind of day I was fated to have after a night like that.

Somewhere in her sleep my wife must have felt my frustration, pain, and plans. She rolled over and laid her head on my shoulder and draped her arms over me so I couldn’t leave. I told her I meant to get up, but she only moaned her disapproval and refused to budge. So, I gave in and gave up, and the next thing I knew I was drifting off again.

Two hours later I was a brand new me and I’m convinced today is a wholly different day, all because of her and those two hours of deep and restorative sleep I got. The migraine is now gone and I’ve had enough energy to mark an item or two off my to-do list and spend a little time at my desk.

I’ve missed this space lately. It’s a mess, but I decided not to use up all my time and focus on cleaning and simply sit down and try to create. I made a new blackout poem and I’ve published and scheduled a few posts here.

There was more I could have done, sure, there always is and will be, but it felt good to do a little more than drag this bag of meat and bone from work to bed and back as I have been now for weeks.

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My body and mind are a complete wreck today. Part of it is last night’s indulgences, and part of it was today’s anxieties and stresses.

My family has been going through a hard time lately and today was a day to face some hard truths head on. Today I had to be brave, to open up, say what is on my mind and in my heart, and set boundaries and demand that things change so that one day things might really, really change.

It was one of the hardest things I ever had to do, but at least I didn’t do it alone. We came together as a family. For so much of my life I have been the caregiver, the advice-giver, the strong, loving, and dependable one in my family, but lately I have been wondering when and who will ever be all of that for me? Part of me thought, “no one and never”. Part of me thought, “at least not until you ask”.

So, I asked and to my pleasant surprise everyone answered and I was reminded that despite all we have been through, separately and together, we turned out to be a surprisingly well adjusted, loving, and connected family. We have some big problems and we carry heavy baggage, but we are blessed in all the most important ways.

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The weekend is finally here and with it a more relaxed, or more accurately, an unconcerned attitude. I feel unbothered and unaffected, almost detached, and it feels good.

Lately I’ve been drifting unanchored, at the whims of currents I cannot control. I’ve been swept up in the emotions and problems of others for too long, and perhaps my mind has hit a limit and has mercifully shut down some of that emotion and empathy I seem to perpetually have too much of.

The downside is my patience is thin and nothing feels particularly important to accomplish right now. All passions are dampened and productivity is suffering. THe upside is, I’m in a sociable kind of mood instead. I want to talk and laugh. I want to connect with the people around me and have a little fun for a change. So, that’s what I’m doing. No work is getting done today, but there are more pressing needs at hand.

Lately my favorite part of Friday has been dinner time. These past months I’ve been forced into a bland, low-residue, and often liquid diet in an effort to cope with a severe ulcerative colitis flare up, but on Friday nights I let myself one cheat meal. Tonight we are picking up baby back ribs, burgers, and margaritas from one of our favorite restaurants.

You don’t realize how exciting food can be, or how much the texture, flavor, and taste of food contributes to your quality of life until you can’t have it. This dinner, and every Friday night cheat night, are the highlights of my entire week. I suffer every Saturday morning, sure, but I’ve never regretted it once.

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The weather has improved today. More fall like than winter, which is an improvement over the past few days, but I’d prefer the warmth and sunshine of summer were back.

The week can’t pass by fast enough. I’m in one of those moods where I’d rather be anywhere else and doing anything else other than working. There is nothing particularly irritating or stressful happening at my day job. I just have so much more going on in my personal life and so much I need to do, for both myself and others, that anything I do here feels almost pointless.

I don’t want to feel that way though. I know my work is important and I have always felt fulfilled by it. I don’t want to lose that feeling or focus. I don’t want to always wish I was somewhere else. Doing my best work no matter what the task or goal has always been a source of pride for me and slipping into producing work of low quality or substance would result in profound disappointment in myself.

I suppose I have to work on dividing and balancing my work and home life, though I’ve never been a believer that the two are or should be separate. There is only life, and it happens to you all the time and wherever you are, but I guess some thoughts and emotions, worries and preoccupations must be cast aside from time to time so we might attend to other more urgent or important matters.

They may not even need to be cast aside, but simply allowed to come and pass without resistance or obsession.

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It’s my bi-monthly infusion day, which means I spent the morning hanging out with the nurses in the oncology/hematology department getting my 8-week dose of medication before heading home to rest through the late morning and early afternoon hours.

I always take off from work on my infusion days. Not just because I’m tired after, but because the clinic and the fact that I have to go there at all can be so depressing I need time to decompress from the procedure and return to feeling normal.

The nurse asked me how I was doing and how my symptoms were faring. I laughed, though I didn’t mean to. I just didn’t think he really wanted to hear how I was really doing. I gave him the light version but even then, just hearing ugly description of what my life has been like until now felt distressing and disturbing.

I spent the rest of the afternoon cleaning. It’s been a long time since I’ve been able to catch up on my half of the responsibilities in the house. I used to hate chores but now going through the house, room to room, organizing and disinfecting is its own kind of medication and salve for both the body and soul. I needed it more than I knew.

Life continues to throw bad news my way, but I’m determined not to let myself get emotionally wrapped up in lives I’m not living. Most of what I stress about isn’t mine to fix or worry over, but I can’t help wanting to make the world right for those I love, and I can’t help blaming myself when I can’t. I’m trying to remember not every problem is mine to fix and not every challenge is mine to face. My role can be supportive, even if all I can do is support you all the way to rock bottom.

Knowing myself, though, the willpower and resolve won’t last. I can’t help who I am at the core, for better or worse, I have to do something. I just hope I choose the right thing. I hope I don’t risk the work and relationships I cherish the most.

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