I had a phone appointment with the doctor today and for the first time in a long time it was all good news. Starting tomorrow I can begin tapering off of the medication I have been on the longest and which has done the least for me and next month I can start tapering off of the mild steroid I was put on. By summer I’ll just be taking supplements and going for half hour infusions every other month. It’s a dream come!
Less than six months ago I was worried about how close I was to surgery and losing my colon forever. I was worried about more medications being added and never getting out of the painful flare I was in. I was feeling so down and hopeless, but I’ve got an awesome support team and a body that is always frustrating me but is always fighting to heal the best it can.
On the flip side, I also had to make a series of phone calls to the financial department and the drug company’s patient assistance program to try to work out paperwork problems and payment delays. I’m lucky to be getting help to handle the infusions costs which are thousands of dollars each but the stress of submitting proper forms and making sure the two sides speak and knowing that if something goes wrong, I will be the one held financially responsible is incredibly stressful, and I’m supposed to be watching my stress levels.
I spent the rest of the day in the “creativity room”. I was supposed to be cleaning but spent the time writing instead. That’s a nice change from the norm and feels like a good sign of progress. Perhaps that is the key after all, using writing to procrastinate when I have other things to do rather than doing everything, anything, else rather than writing.
Today was not a good day. I woke up too early and with a pounding headache and though copious amounts of caffeine and aleve have blunted the worst of the pain and fatigue, I’m still feeling very low and blah.
I tried to push hard to get through all the things on my to-do list. It was slow and tedious going, but I’m happy with what I was able to do. It seems like my wife and I are working on similar house and spring cleaning projects, only I am a day behind her. Yesterday she rearranged much of the kitchen and today I deep cleaned it. Today she organized her desk and half of the “creativity room” and tomorrow I’ll do my side. While I’m in there she’s going to start on the basement and by the weekend, I’ll be doing my share down there too.
I had the energy to focus on straightforward tasks, but writing was out of the question, though I have the germ of a new idea beginning to grow. A personal essay I’d already been thinking of writing that I might be able to tie into my first assignment of the Memoir and Personal Essay course I enrolled in. I have a life event, an emotion, a story, and a point but within the piece you’re supposed to reference and tie in a greater global event that was happening around the same time as this person was impacting your life. This is where I am drawing a great big blank.
The truth is, I didn’t try all that hard either. I’m feeling really down about this isolation and I’m growing more concerned about our financial future. My wife and I discussed the idea of me getting a temporary job to help get us through the summer and keep our savings intact. This sent my anxiety through the roof and I felt some initial guilt for not wanting to do it. It’s just been a long time since I’ve worked anywhere else and I afraid.
Everything will be okay. I know that. I’m just having trouble believing it at the moment.
I finished my first week of Science of Well-Being today and I have to say I’m really glad I enrolled. In fact I wish I had started with this course when I first set out on this self-guided learning journey.
The videos were a great introduction, but most eye-opening part was the tests set up to measure your levels of happiness and your character strengths. My happiness level was lower than I expected, only 2.6 out of 5, and my number one character strength is…judgment?
I never even thought of judgment as a character strength let alone considering it to be one of mine but in reading the description I think it actually does apply to me.
“Thinking things through and examining them from all sides; not jumping to conclusions; being able to change one’s mind in light of evidence; weighing all evidence fairly.”
Some of my other top strengths were perspective, love of learning, prudence, and appreciation of beauty and excellence. All true, but still quite surprising. There were others much lower on the list—not weaknesses per se but traits that just “come less naturally to me”—that I wished were nearer the top but all in all I’m thrilled to have found the words to describe a part of myself I’ve never quite been able to put into words.
I also started week one of Memoir and Personal Essay: Managing Your Relationship with the Reader but after the first couple of videos I felt I’d spent enough time on learning for the day and committed to picking it up again tomorrow. I have to pace myself and avoid burnout, boredom, and becoming too consumed and neglecting my other goals and interests.
Not much writing got done, but I felt cruddy and distracted this morning. It wasn’t until after lunch that I was able to wrangle my mind and focus enough to form thoughts or retain information. I think tomorrow will be better.
Update: Had my wife take the character strength survey too. Her greatest strength is fairness, and that is exactly right. Fairness came up surprisingly low for me and in taking it over with her I realize there is more than one way to think of fairness. She treats everyone the same, both for good and bad, I treat everyone as I believe they deserve in accord with their actions. Comparing the rest of our results was really interesting too. In some ways we are really similar and in some ways we are very, very different but in a good way.
Today is the first day of the rest of my life. It’s been a long time since I’ve thought of that phase and this is the first time I’ve felt it ever seriously applied to me. 35 already feels different. For the first time I feel old. I know I’m not old but this is the first time I feel that I am not young and in my inexperience they seem the same.
This morning my wife made me a big breakfast, and afterward there were mimosas and gifts. She went all out this year. I got a cold-brew coffee maker, a Scrimshaw knife kit, a box of “Strike Your Fancy” matches, and a big, beautiful longboard! Apparently, there is still one more gift, but it hasn’t shipped yet and she won’t tell me what it is. I just have to wait until the world starts moving again to find out. FOr now I’m hanging out, watching my favorite shows and waiting until it’s time to roast the artichokes, steam the cran legs, and open the wine. It’s a good day despite everything that’s going on around us.
I got an email from Coursera about some courses I might be interested in. One is Memoir and Personal Essay: Managing Your Relationship with the Reader and I’m really thinking about doing it. I need a long term learning goal I can work toward during these next three or four months away from work. There were courses I’ve been enrolled in and have been struggling to finish for nearly a year or more, but rather than wasting time avoiding or forcing myself to do the work, I have decided to embrace quitting. I’m quitting them (for now at least) and moving on to things I feel excited and passionate about.
There’s another one I heard about during a Sam Harris interview with Laurie Santos, “an Associate Professor in the Department of Psychology at Yale University”. Her course, The Science of Well-Being is not only the most popular course at Yale but also on all of Coursera. I think I’ll give it a go too.
So, I have new things and new goals. I have renewed resolve and a new direction. I’ve taken a tiny step and it feel good. It feels right.
Today is a better day. It’s my birthday eve and I feel both very excited and very nervous. I’m excited for my own perfect day, or as perfect as my wife and I could make it. I’m excited to receive some gifts and to eat some delicious food but I’m nervous to start a new year of my life and I’m also a little sad to end this one.
It’s a day full of anticipation. I’m living entirely for tomorrow right now, but I’m doing my best to come back and to make this day its own. I made a little time to write and mustered the motivation too. I didn’t finish anything of significance, but I did work on a few pieces sitting in my drafts. I had hoped to post so much more than I have, but I am not counting this as a failure but as a reminder.
I have never been very good at blogging challenges and I don’t particularly like them much either. They are a wonderful motivator though and even if I don’t post anything else more than my little journal entries for the rest of the month, I will feel like I have won. I’ve already written more in these 11 days than I have in over a year.
I will still keep at it, for the rest of the month at least, but I’m not sure daily blogging will every be something I am capable of. Maybe if I change the things I am posting. I’m considering ending my Weekend Coffee Shares. I write these little updates every day and I really would like to spend my weekends writing other things instead.
The weather is gorgeous again but the reports are foretelling high winds and a 30-degree drop in temperature between today and tomorrow and through Monday. I’m bummed about the return of winter but I’m trying not to be. It’s not like I had big plans for the weekend, anyway. There is nowhere to go even if I could.
It’s another blah kind of day but the want to do more is there even if the energy and willpower isn’t. It really is like fighting yourself. Part of you is saying no to everything and whining all kinds of reason why and another part of you is calling that part a big baby and screaming that she has to suck it up and get to work if she really wants to change anything about her current situation. And then there is a third “I” the one who watches and wishes she had a say. She wishes she had more control and more understanding of these other two. She wishes she had her own life and didn’t have to rely on the others to do or not do.
That’s how it feels, but that isn’t really how it is. There is just me, just one, and I am simply made up of all kinds of contradictions and obsticals to overcome. I am just a person that is harder to be than others. Or maybe that isn’t actually how it is either.
Today started out so badly but has improved so much since that I feel as if I’ve lived through two entirely different days at once.
I had more nightmares last night but with the help of a good dose of melatonin I was able to stay asleep and so only had to suffer through just the one. I’ve been waking up early again, which I took as a good sign, but today I hardly recognized myself in the mirror when I woke. My whole face felt swollen and on top of that my joints from the hips down were stiff and painful.
Shortly after waking a big mistake committed (unknowingly and accidentally) by me was discovered this morning and though it’s far too upsetting a to describe here, I will tell you that I was very angry with myself and sorry to my wife for messing up so royally. Of course she forgave it all and then set out to make everything right again. She even managed to cheer me somewhat, but it still sucks to be only the second best wife in this marriage.
I didn’t feel much like writing or reading as a result. The last place I wanted to be was in my own head, so I spent most of the day listening to music and cleaning around the house instead. It felt good to unplug for a while, move my body, and get some things done. I showered too and did some important self-care things. I managed eventually to eat something and now I think a hard cider and an evening on the couch could push the last of my humiliation away.
Venturing out of the house when the need arises is becoming more and more stressful as this pandemic wears on. We were running out of some basics and wanted to get provisions for my quarantine birthday celebration in a few days. It took two hours and trips to three different grocery stores, and we still didn’t get everything we were looking for. It’s pretty awful out there.
The good news is the shelves are looking more and more stocked and it’s getting easier and easier to find what we need. Today was only difficult because most of what we were looking for were items that are not basic or essential. I think much of the bulk and panic buying is subsiding, but there is still no toilet paper anywhere. Thank goodness we still have quite a few rolls left.
Wearing a mask is difficult for me. I feel like I can’t breathe in it and my glasses get fogged up. With all the people around, the inability to find anything, and the effort it takes to maintain a 6 foot distance between yourself and others makes for a high anxiety and an irritable mood and, if you can’t get out fast enough, an inevitable panic attack. Under the circumstances, my wife and I did well, I think, but it’s hard to tell whether it’s better for both of us to go or only one.
I’m back home now, but it is a bad writing day so I’m taking it easy instead. I’ve been fighting a headache since yesterday afternoon and I wasn’t able to get a good night’s sleep either. I kept having bad dreams. I would wake up drenched in sweat from one only to fall back asleep and have another. Each one was a different terror all its own. Each dream was so vivid, so real, that I woke up confused and relieved that what I had been fighting through was not in fact my real life.
I hope this is not a new trend. I have a feeling it’s connected to my increased anxiety, which is obviously connected to everything going on and all the growing fear and uncertainty around me. I’m considering seeking therapy but I keep coming back to the fact that I am one of the lucky ones and instead of feeling anxious or afraid I should be feeling grateful. I shouldn’t need therapy to get through this when so many more people are getting through it with fewer recourses and less support than I already have.
A friend called me today, and it meant the world. The hardest part about being away from people is how hard it is to feel cared about, loved, or wanted, but she made the effort to call, not just text, but call. The conversation was short, but it cheered me up and I have a feeling the good it did will last a long while. I think I’ll try calling people this week too. It isn’t the conversation so much as the thought that counts and I would like to spread the joy.
It’s been a while since I’ve written any poetry but today the words were coming easier so I thought I would give it a try. I’m pretty proud of the outcome and encouraged by the enthusiasm I was able to muster. Some days are going to be easier than others it seems, and maybe that’s okay as long as I make sure it’s a bad writing day by actually trying first by actually trying and I still do something productive with the day like reading or working on an older piece.
I finished book 11 of my Penguin Little Black Classics, A Cup Of Sake Beneath The Cherry Trees by Yoshida Kenkō, and started book 12, How to Use Your Enemies by Baltasar Gracián, which, it turns out, is also a book about how to use your friends. The premise may be shrewd, but I’m finding a lot of insight about the human psyche in here and I’ve realized that the way things should be and the way things are each a kind of truth.
Today is the last day of temperatures over 70 degrees for a while, they say. I can see a severe dip in temperature and snow in the extended forecast. I had hoped we could plan a hiking trip next week, but the trails will probably be muddy for a while after that. Oh well, there is plenty of time and the days are only going to go on growing warmer now.
The words weren’t flowing so well today so I gave myself permission to skip the writing so long as I promise to give it my best again come morning. I’m reading instead and have already finished On the Beach at Night Alone by Walt Whitman and am now sitting half-way through A Cup Of Sake Beneath The Cherry Trees by Yoshida Kenkō. With nothing else to do today, I think I’ll go ahead and finish it, then start on Borne by Jeff VanderMeer.
Some days all this time is welcome, some days it’s more than I can bear. Looking forward is anxiety inducing and imagining the sheer number of days to come that are filled with nothing paralyzes me. I have to take them one at a time. Time has to become irrelevant for now. There is just right now and what I have and the little I can do with it. It has to be okay. It has to be enough.