Religion

What a Week

~ Bethany ~ 19 Comments

This has been one of the longest weeks I can remember. Sunday my husband and I spent the day and late into the evening with his mom by the hospice bedside of his grandfather. I didn’t know him well, but he was always charming and kind to me. Jarrod adored him and apparently got a lot of his singing talent from the man. As for my mother-in-law, her love for her dad is obvious and deep. It was a long, emotionally trying day for everyone. No one likes to see people they love in physical or emotional pain.

Monday, the plan was to relax, curl up on the couch, and read a good book. Instead when I woke up still coughing I sent messages to my main oncologist as well as the oncologist directly overseeing my Keytruda. I then fell back asleep. I woke up to a call from the cancer triage nurse at Sibley (part of the Johns Hopkins system, and where I’d been receiving Keytruda).

She was concerned about my coughing, and only grew more concerned as she heard how often I had to pause my sentences to catch my breath. She asked if I would be able to come into Sibley and said that she was going to confer with one of the oncologists and call me back. Well, she called back within about 15 minutes and said I needed to come into the emergency department at Sibley and have a battery of tests.

I don’t think I’ve ever readied for the day quite so fast because she kind of put the fear of God into me. She was friendly and everything, but you don’t expect to be told that some coughing means you need a CT scan!

Thankfully I was able to borrow a friend’s car since Jarrod was taking ours to the mechanic due to a pothole from Sunday. I convinced Jarrod that I would be fine driving on my own, it was just some tests, and I’d see him that afternoon.

Yeah, it wasn’t so straightforward.

I got there and got taken back almost immediately. The first time they accessed my port it hurt like the dickens and they couldn’t get any blood return on it. Normally accessing my port doesn’t hurt terribly bad if I’ve had my emla cream on it like I did that morning, so that seemed unusual. Then a second person accessed it and was able to inject saline into the port, but still not get any blood return. They decided to access veins on my hands.

If you know anything about the last times I had my veins directly accessed, I’m sure you can imagine the senseless repetition of “no, no, no, pain, ow, no, no, bad idea, no, no, no” that was my immediate response as I literally curled up on the hospital bed in fear with tears starting to fall as I remembered how much it had hurt last time.

Right hand with gauze near the pinky
It looks small but it hurt like hell.

They really needed the blood. They first accessed my right hand and I sobbed, and I screamed, and I swore, but I got through it. Then, a few hours later, they were able to get blood from my port, but needed blood from an additional spot to check for infection so they accessed my left hand while I again sobbed and screamed and swore while that kind nurse told me about her beloved cat because I asked if she liked animals.

In addition to the CT scan I was given two nebulizer treatments and some saline to ensure I was fully hydrated. The treatments seemed to help a bit, though I was definitely amped up afterward!

Then they started talking about me staying overnight. Apparently, the scan showed a tumor pressing on an airway and so they wanted me to do a walking oxygen test and that would decide if they were going to admit me overnight.

I texted Jarrod and tried really hard to be brave and not scared out of my mind. I’m not actually brave, I’m terrified when I don’t totally understand what’s going on or how to make my body stop struggling.

The results of the test indicated that I should stay overnight. They hooked me up to two iv bags of antibiotics because there could be an infection. They assured me that they were letting Dr. Meyer (my main oncologist) and Dr. Wright (my radiation oncologist at Sibley) know what was going on. Everyone was incredibly kind and helpful to me, even as I was struggling to stay calm and not panic. The room they wheeled me up to was surprisingly huge and thankfully Jarrod showed up shortly after I got there.

Jarrod standing with backpack and bags
Jarrod to the rescue!

Seeing him and getting a hug from him was amazing. I was still scared, but I was significantly calmer and more certain that I could handle whatever might come. He had packed a bag with what we would both need to stay overnight and even coordinated with my sister to have delicious Booeymonger sandwiches delivered. Roasted veggies with cheese always help.

Tuesday we got to meet with one of the oncologists. She was great, but I still ended up sobbing at her. Not only did I have a tumor pressing on an airway, but all the tumors in my lungs had grown significantly since July, plus I had about 20 new tumors all over 1cm each in my liver. Previously my liver did not have any noticeable tumors.

I cried and hiccupped and sobbed. If you’ve never sobbed with only one working lung, I should let you know that it is really uncomfortable and leads to a lot of coughing. I do not recommend it.

Thankfully my sister and her amazing mother-in-law brought lunch and visited with us. I gave my sister a huge hug and told her what we knew and then added that, as much as I look forward to seeing my dad, I don’t want to see him any time soon. I’m not ready for that. In the immortal words of Dr. Who, “I don’t want to go.” Laura was wonderful about cheering me and making me feel more determined. Still scared, but determined. I come from two families of incredibly strong, kickass women. I can be strong. I am not done fighting.

I spoke with a pulmonary specialist, Dr. Elizabeth who was fantastic. She explained what the options were for what could be done to help me breathe. She talked about the whole huddle of doctors who were discussing my care and figuring out what was best for me and my specific needs. Plus, she was fantastic and human and kind. And, when she saw the book I was reading her response “Oh, I loved that book!” Shallow, maybe, but it made me feel like a real person not just a tumor-filled body.

My main oncologist called while Dr. Elizabeth was there and talked with us and assured me that he was up-to-date with what was happening. He assured me when I asked that he wasn’t giving up hope, just that things were going to be harder from here on out, and that a clinical trial would likely be my best option if I got into a good one. We made plans for me to see him as soon as possible after I was discharged so that we could figure out my next treatment steps.

Our pastor and friend, Amanda, also came. Praying with her and having Eucharist, as well as simply talking with her was huge. Amanda has been praying with me since my first surgery three years ago. Having her visit meant more to me than I know how to say. I was also incredibly touched that she assured me that the other two pastors at my parish were praying for me and knew that I was in the hospital.

Another awesome visitor was a woman who had been on the gynecologic cancer retreat with Jarrod and me. Getting a hug from her was amazing, plus she remembered my love of cats and brought me an adorable kitty ornament that made me grin.

By Tuesday evening we had been informed that they wanted to keep me in the hospital overnight. They wanted to keep an eye on my oxygen levels, keep giving me daily antibiotics through IVs, and make sure I stabilized a bit. That was fine. Sibley thankfully has pretty decent sofabeds so Jarrod was able to get a decent amount of rest. He did drive home to grab more clothes for the two of us, plus feed our cat and take some photos for me.

Wednesday we found out that there was a chance they might want to keep me in the hospital until Friday. Apparently they were trying to see when they could do a procedure to improve my breathing. If they could do it on Friday, they’d keep me in the hospital until then. If it was Monday, they’d have me go home and I’d do the procedure as an outpatient.

I was near tears at that. Everyone was nice and it was as restful as a hospital stay can be, but I just wanted my bed and, more importantly, my cat. I couldn’t take deep breaths to calm down, so I wanted to sit near my cat and hear him purr calmness at me. I understood the reasoning, but it was still a blow and I was hoping that I would get to go home.

We also were visited by a patient care coordinator who had been involved with the retreat and talking with her helped. Plus, she said to just text her when it was time for chapel (I’d gotten permission to attend) and she’d get me a wheelchair so I could get downstairs without exhausting myself.

We then chatted with an oncology social worker who was fantastic. She even suggested that I bring the disability paperwork that’s been giving me so much trouble in and she could help with that. I did also promise her that I would soon see my therapist since I ended up babbling way more to her about my fears and guilt than I meant to. I blame being really tired and the bad news about my tumors bringing that guilt and feeling that I haven’t done enough way high up to the surface.

Chapel helped. The priest didn’t give a great homily, but the ritual (even if I couldn’t do all the standing and kneeling), the readings, and the Eucharist helped in a way that I can’t put into words. I was still terrified, but I was reminded of my faith. I had also called my secondary parish. Lately Jarrod and I have been attending a Wednesday service at another Episcopal church near us. The pastor and deacon know about my cancer and pray over me when I’m there. I was really sad to not be going to their service that day and I really wanted to ask the small congregation that I knew would be there to pray for me. So, I got voicemail and left a very abbreviated “I’m in the hospital so we won’t be at service, but there are some problems and I would really appreciate if you could include me in the intentions at service today.” I found out Thursday that they did mention me, and strangely appreciated me asking for the prayers.

They had me do another walking oxygen test. I passed the test part in that my oxygen levels stayed up, however I also needed a chair quickly because my heart rate spiked like mad and I got super dizzy. Stupid only one fully inflating lung. The nurses who helped me back to my room were lovely though and made sure to say that they appreciated my hoodie. It was from Third Space Wellness and says “Life is a beautiful sh*tshow.” It accurately describes my view on life. I also got a stern talking to about stopping before I was dizzy rather than grabbing onto the wall as I got dizzy.

Well, the prayers must have done something because I was informed Wednesday afternoon that I was going home! I was thrilled. I got a thick packet of discharge instructions, prescriptions for antibiotics as well as steroids (to help my breathing), and a reminder to not overdo it and to be careful to sit when I got tired rather than trying to push through it. I guess it’s not always good to try to overachieve?

Before I had even been discharged I had called and emailed to set up an appointment with my main oncologist. He was kind enough to fit me in today, Friday, despite a completely full schedule. I think he gave up his lunch hour. I’m not sure how I ended up with really great medical people.

As soon as we got home, Toby started to purr and did not stop. My friend Quinn brought over some of her incredible brownies and encouraged Jarrod to take some time to himself since he had also had a crazy few days and needed to center himself. He apparently really enjoyed just getting to talk about football at our neighborhood pub and focus on sports rather than life or death (who would have guessed?!) Talking with Quinn was really good and helped me feel calmer.

Gray cat on Spinning Silver book
Toby stayed very close

It was so good to sleep in my own bed that night with Toby curled up at my feet just purring his own happiness at having his people back. That is a joy that will never get old.

Thursday I found out that my procedure was scheduled for Monday morning and that they seemed confident they would be able to make me more comfortable. I started telling a few people what was going on, but it still seemed surreal and it was hard to tell. Telling people made it feel more real when I was still working up the courage to not be in denial.

Friday’s doctor appointment made it real. Dr. Meyer spent ages talking with us and listening to every question I had, never rushing me. He described exactly what was going on with my scans, showed them to me slide by slide so that I could see exactly what was happening. Not every patient wants that, but it always helps me to visualize what’s going on.

CT scan images

He then suggested the plan that he thought, for now, was best for me. I’ll be on two drugs — one I’ve had before and one I haven’t. The drugs are gemcytomine and dacarbazine. The side effects will be similar to chemos in the past, but the nausea might be worse. Plus, it’ll be every other week so there will be less recovery time in between.

I’m scared, I’m holding onto hope because I can’t imagine not fighting to believe that I’ll get my miracle. I have the right genetic marker for a trial at NIH, so I just have to wait a few weeks while they review slides of my tumor to see if I’m fully right for the trial. Who knows what’s around the corner?

Dad always believed that there could be something good just waiting around the corner. My job is to get to that corner, even if I’m bald, nauseous, and suffering from joint pain. I’m lucky enough to have friends who have my back and will help me get there. Their kindness moves me to tears. I hope I can show at least half as much love as they have shown me.

Now, today, that love needs to go to my husband and his mom. My husband’s grandfather passed away last night. Selfishly I hope the funeral home is flexible and allows us to schedule the service for next week to balance giving out-of-town relatives time to come in and (selfishly) me time to be less nauseous and pain-filled after this coming week’s chemo and neulasta shot. I love Jarrod and Patti. I want to be there to support them. Love is all I have to give.

Asking God for a Non-Literal Break

~ Bethany ~ 6 Comments

A friend of mine, Julia, announced that she’ll be writing for an ecumenical Millennial Christian feminist blog, Grace & Feminism. Given that I tend to enjoy reading actually-feminist Christian writers, am technically a Millennial, and deeply respect Julia, I decided to check out the blog.

The third or fourth post that I read in the course of my poking around the site made me pause.  It contained the line “I was so tired of God using me for other people to find strength”, shortly followed by the question: “do you know how taxing it can be when you’re the one inspiring others because of how crappy your life is…?”

It almost seemed like a response to something I had near yelled at my counselor the day before: “My name isn’t Job!” That exclamation had been followed by sort of rant that boiled down to me stating the various difficulties of the past few years, with particular emphasis on the past year, and stating “I think I’ve coped pretty fucking gracefully with…” before each difficulty. I then remarked that, while I don’t necessarily believe that God causes the bad things in our lives to happen, the only purpose I could see for me tripping and breaking a bone in my right hand was, well, to break me.

x-ray of right hand with a break at the base of the 5th metacarpal

See, I’m right-handed and not at all ambidextrous, so having a cast on my right hand eliminates most of the activities that have helped me to cope “pretty fucking gracefully” – as I so eloquently put it. I can’t quietly journal by hand when I wake up in the middle of the night, nor easily type, so coping by writing is suddenly much harder and full of its own frustrations. I can’t tie my own tennis shoes, so escaping for a walk without needing help is right out the proverbial door. Most of my yoga modifications involve using my arms and hands for balance, so losing myself in yoga seems unlikely. And, well, the whole coloring thing is right out, since my three-year-old nephew has better fine motor control right now than I do with my left hand. Even reading is harder, though thankfully I can manage that with some modifications and difficulty in how I hold a book or my Kindle. In short, most of my coping mechanisms, habits diligently developed because of how crappy aspects of my life has been over the past few years, seem to have been taken from me just as I have to deal with a shitload of other crap.

I don’t want to miscommunicate here. Overall, to paraphrase one far greater than I am: although I dearly wish that this cup had passed me by, I am grateful that some good has come out of it. I have genuinely hoped that my mourning might make me better able to be of service to others who mourn. I have also hoped that by writing about my cancer as honestly as I can that I might be of some small service to others who struggle, that they might find some use in reading my words. I truly am grateful and proud whenever anyone says that I’ve helped or inspired them. It means more to me than I know how to say.

That, well, said, it was wonderful to read that someone else who likely agrees with the idea of hoping that her difficulties serve others has struggled with wanting to not be the damn inspirational movie of the week. I’ve never yelled at God, “I’m tired of you using my pain to help other people. I need something good!” However, I have certainly yelled at God that I’m tired and that I need something good.

I was once asked by someone in mourning why I hadn’t lost my faith despite everything that has happened. I remember being surprised by the question and assuring the individual that I don’t entirely understand myself why I haven’t lost my faith. I shared something similar to what that Millennial feminist Christian writer shared about herself – that of course I had felt rage at God, but that I didn’t think God minded me yelling and that I still strongly felt that God was with me in my suffering. God walks every awful step with me. I believe that with all my heart. Yet, I still yell at God for not protecting me, for allowing a life so full of promise and hope become cluttered with pain, grief, and distress.

My grumblings this past month have been anything but graceful! Rather, they have been full of pain and rage and tears. They have included the wailing question of why this stupid, relatively-small-in-the-grand-scheme-of-things bone fracture happened on top of every-fucking-thing else that has happened and that I am still dealing with and struggling through. Despite all that, I do still think that God is okay with me yelling heavenward. In fact, I still think God finds ways to remind me of that and comfort me.

I drafted the first 800 words of this post over a week ago. Then it sat on my laptop waiting for me to edit and publish it, but something held me back. As honest as I try to be, something about this post felt like that old metaphor of writing being simply opening up a vein and bleeding. It’s not easy to hold the concepts of 100% belief alongside the reality of rage and deep distress without feeling guilt or like my faith simply isn’t strong enough. What finally made me decide to finish and publish this post? Well, it was one of those reminders I attribute to God.

My husband and I went to a Wednesday service this week. During service we read Psalms 116. As we read it with the rest of the congregants, verse 10 stood out to me. It echoed in my head and would not leave. It seemed almost like an insistent whisper saying that maybe somebody needed the same reminder that I did. Maybe it’s simply hubris, but it felt like God telling me that I needed to finish and publish this post that I was tempted to keep hidden and unpublished.

What was verse 10? Well, in the book used in that Episcopalian service, the words of Psalm 116:10 were as follows:

I believed, even when I said, ‘I have been brought very low.’ In my distress I said, “no one can be trusted.”

Healing the Pain

~ Bethany ~ 3 Comments

FYI, if religion and/or Christianity make you uncomfortable you may want to skip this post. I’ve no desire to proselytize or make anyone feel uncomfortable. As usual though, all are welcome to read if you so choose.

Awhile back my sister forwarded me an email from Fr. Richard Rohr at the Center for Action and Contemplation. He’s a Franciscan and the emails are daily Christian meditations. I believe the one that she sent me was on the theme “love is stronger than death” which was well-timed, being sent only a few days before the one-year anniversary of my dad’s sudden death.

I started subscribing and while I’m not 100% at reading them every day, I find that when I do read them, usually something makes me pause and reflect. Some days the emails, or even just parts of them, strike a deep chord with me. One the other day made tears start cascading down my cheeks as I just felt a sense of rightness and love. From that email it was one particular sentence that resonated deeply with my soul, “God’s love was infinite from the first moment of creation; the cross was Love’s dramatic portrayal in space and time.”

Whatever else I have felt about religion and God, I have (almost) always known that God loved me. Reading that sentence, I thought about the times in my life when I felt unworthy or unloved. I felt such a sense of love and lightness compared to the understanding I’d developed/been taught as a child that the crucifixion was because God demanded a worthy sacrifice and that each time I failed and sinned, Jesus suffered more on that cross.It was similar to the first time I read Julian of Norwich’s Showings (mystic writings) and saw her describe original sin as humanity being like a child so eager to get a glass of water for a beloved parent that the child trips and falls into a hole. Salvation was Jesus showing us that the hole wasn’t nearly as deep as we’d believed and that we were already loved and saved.

Today I was reading some old emails that I’d missed in the hecticness of life and I came across an email on the concept of Freedom. This was another email where I found tears welling up. This time it was a few sentences, rather than just one:

“Jesus was neither surprised nor upset at what we usually call sin. Jesus was upset at human pain and suffering. What else do all the healing stories mean? They are half of the Gospel! Jesus did not focus on sin. Jesus went where the pain was. Wherever he found human pain, there he went, there he touched, and there he healed.”

There is so much pain in the world. I believe that must be more upsetting to God than most of the actions people like to loudly decry as “sinful.” The reminder that Jesus went where people were in pain and then he healed that pain, is deeply moving in a way I’m not sure I can put into words. I think I’m fairly open about my belief that we are meant to be Jesus for each other, and especially that I see God in those who help heal me physically, emotionally, and spiritually. The sentences “Jesus went where the pain was. Wherever he found human pain, there he went, there he touched, and there he healed,” are true to me on a deep level.

small pond with waterfall and large goldfish
A peaceful and healing pond at one of the hospitals that is helping to heal me physically

Just in the past week I have witnessed so much pain. Yesterday I gave my mom a hug at lunch when she teared up while we talked about my dad. The other day, when I was desperately afraid my healthcare would be taken away, dozens told me that they were calling their senators to fight for me. On Twitter the other night, I saw people sharing their fears and concerns of quite literally dying if the ACA were taken away. Today, my husband and I spoke with a woman wracked with pain who recently buried her best friend after caring for him in his final months.

I don’t know if my hug healed my mom in any way, or if my husband’s and my comments helped the woman today. I do know my friends and loved ones helped heal my pain and fear. Pain is a part of life for everyone, and ever since that sarcoma grew in my uterus it’s been a huge part of mine. The pain is and will be healed. I don’t always know exactly how, but I do believe that healing will happen.

For now, I think that’s enough.

Stepping Through Grief

~ Bethany ~ 12 Comments

Monday will be one year from when my dad passed away. Ironically my mom had been visiting my sister and me to attend a walk benefiting the gynecologic cancer research and resources at Hopkins. It was meant to be a celebration of survival for our family in some ways. Instead we lost my dad whose love and kindness had gotten all of us through so much.

If you never got the chance to meet my dad, here’s a video that my brother-in-law found of my dad speaking at a cultural garden dedication:

It’s very stereotypically him in a lot of ways: his humor, compassion for others, obvious love for my mom, and ability to use his own background to speak to the need for caring about others. I know I’m biased as his daughter, but my dad was really wonderful.

While my siblings and I were in Cleveland trying to process and cope in the immediate aftermath of losing our dad, we started dealing with some of the practicalities. One of those, that I’d never really thought of before then, was dealing with magazine subscriptions. One magazine that my dad had been subscribing to for as long as I could remember was Analog: Science Fiction and Fact.

It had science fiction novellas and short stories, sometimes serials that would be published over months, as well as thought-provoking editorials and articles about cool new real things in science. When I was a kid I started paging through my dad’s copies and reading some of the easier stories. Eventually I read all the stories, and after that all the stories plus the factual articles. My dad and I would discuss the stories and articles, even when most adults probably would have assumed I was too young to understand them.

When I went to college my dad would bring his copies to Cincinnati for me to read. Then I’d catch up on the issues and we’d discuss them over the phone or when we were next in the same town. The same thing happened when I moved out to near DC. One month my husband’s high school friend had a story published in Analog. When I told my dad, he was so excited that we knew someone who had been published in Analog and whose story he had enjoyed. I always thought that some day I’d polish one of my short stories enough to submit it and have it published, and I’d surprise my dad. I guess I waited too long.

When my husband moved my dad’s car into the garage in May of last year, he found the normal items my dad always kept in the car, along with the most recent Analog. It looked like my dad had read it and was going to either set aside or mail it to me so I could read it next. Jarrod brought the Analog in and I remember weeping because I’d never get to discuss it with my dad.

Jarrod also was good enough to ask my mom if we could transfer my dad’s Analog subscription to me instead of cancelling it. Jarrod wanted me to have that subscription that had gone back decades and given so many great memories to my relationship with my dad. I’m really glad that he did because there is something about knowing that it’s unbroken.

Both the copy from the car and the copies that started arriving at our home were bittersweet. In one sense they were a continuation of something my dad and I loved and a reminder of something we shared. Trying to open them though, was too hard. I’d start to pick one up and be struck again by the fact that we’d never talk about the stories again.

I asked Jarrod once if it bothered him, that these were coming to our home and I wasn’t reading them, just putting them on the shelf for the future. He assured me that it was okay and he knew there would come a time when I’d be happy they were there and I’d start reading them again. He didn’t mind waiting for that, whenever that might be.

That time turned out to be a few weeks ago, almost a year from when my dad and I last talked. I looked at the newest Analog that had come in the mail and I picked it up. I started reading the editorial. Nor surprisingly I teared up a bit and had to stop a few times. I tried to read the first story, but couldn’t. I let myself cry a bit.

Even with having to stop, even with the crying, it felt like progress of a sort, a small step if you will. One of my brother’s favorite sayings that I also love is an admonition to take the next right step and trust in God. Essentially, I’ve always taken it to mean that we don’t have to try to do everything all at once. It’s enough to take the next right step, whether figurative or sometimes even literal, and trust that things will work themselves out. In the case of grief, it’s not trying to not feel pain all at once, but maybe just letting ourselves take whatever the next step is, and there are a lot of them. The steps that have been healing have included putting Dad’s values into play and speaking out against racism and anti-Muslim prejudice, as well as returning to the restaurant where we ate together as a family on his last trip to Silver Spring. One really big step for me was this one, starting to again read the science fiction and fact magazine we both loved.

I haven’t finished the issue yet, but I’ve read a few more stories in it and I’ve stopped crying after each story. I think that’s progress. Admittedly, tears have been falling down my face as I’ve typed this blog post, but I’m okay with that. I don’t remember Dad ever telling me to hide my emotions. I mostly remember him handing me a clean handkerchief when I was crying.

I count myself incredibly blessed to have had a great relationship with my dad where we could seriously discuss and share in a love of science fiction and general nerdery. My dad introduced me to so many worlds, I kind of hate that I’d only just started to introduce back.

He became a huge fan of Cherie Priest’s Clockwork Century series after I lent him my copy of Boneshaker. Because of how much I loved Doctor Who, and after sitting in on a few Christmas specials that Jarrod and I watched while visiting, Dad caught up on new Who and was looking forward to the next season. We’d discuss the different Doctors and what tied them together. When I told him how much I was looking forward to Supergirl hitting Netflix because everything I heard made it sound awesome, he started watching it. One of my most precious possessions is a voicemail from him on a day where my chemo was making me feel awful and he wanted to cheer me up. In the relatively long voicemail he talks about how he’s really liking Supergirl and that she reminds him of me because of her optimism and hope.

Cancer, even stage IV metastatic sarcomas with super toxic chemo and awful side effects, is nowhere near as hard and as awful as losing my dad. I miss him so much and I still sometimes yell at God about that. Monday I plan to watch Star Trek or Supergirl during the day and in the evening get together with my sister for (mild) Mexican and Cleveland baseball watching.

In the meantime, I’ll read some more science fiction and keep the faith that someday I’ll see him again. I believe that he’s in heaven and, ultimately, I’d like to think he’s proud of how I’m handling the curveballs.

We Made It To Easter

~ Bethany ~ 5 Comments

You know what is really hard to do when you have joint pain? Type a blog post. The good news is that this round I did not experience horrific jaw pain. The bad news is that instead of 1 day of joint pain that was managed with 5mg of oxy, I had 3+ days that required 10 and 15 mg of oxy to manage. Still, I will take that over the jaw pain.

I also found out that my white blood cells were super low (like 0.08 when normal white blood cell counts are around 4.50-11). This unfortunately meant that I was advised to skip Easter services. Normally, Jarrod and I try to go to the full Tridium — Holy Thursday, Good Friday, Easter Vigil, and Easter Day (though we skipped Easter Day last year because I wasn’t fully recovered from first chemo). It hurt pretty deep to have to skip something I’d been looking forward to and constantly rechecking with each schedule change to make sure I’d still feel up to attending.

Thankfully our parish came through for us. One of our friends tested out skyping us with his phone set up between two hymn books in the choir loft on Friday, then repeated it on Sunday morning. It was lovely. I cried because it meant so much to me. Then, our friend and pastor, Amanda, came over on Easter after service to bring us Communion. The blood made my poor tongue burn (chemo kills digestive cells, including taste buds, so essentially my tongue is really raw a lot of the time as baby taste buds try to regrow) but it was so fulfilling to have Eucharist on one of the holidays I consider most important.

It hasn’t been an easy round by far, and there’s much more to write soon about kindness and gratitude, plus the perspective gained from being treated on a leukemia ward, but that’ll come another day. For now, I’m improving greatly and I’m not in pain, but I’m still dealing with a lot of chemo fatigue so I get tired and exhausted pretty easily. Walking 2 full laps of our condo building hallway left me shaking and leaning on the wall the other evening, even with multiple pauses to catch my breath.

Also, on a crabby note, having allergies on top of chemo side effects just feels rude, like the universe rubbing salt in my wound. Thankfully those are getting a bit under control. Being exhausted and fatigued, but unable to sleep for coughing (or, my husband’s favorite — me being so exhausted I literally sleep while hacking away like some old school consumption patient), is just not cool of the universe.

However, we’re in Easter. My husband made me a delicious Easter dinner complete with a from-scratch Swiss cake roll. He made me a display of rabbits to call back to a childhood tradition my sister and I shared. I got to see lots of photos of my nephew at my childhood ballpark. And, I got to take part in the Easter worship because the people of my parish are kind and considerate, and went out of their way to include us when it would have been so easy for them to simply say they were busy and unable to help.

I think, even more than stuffed bunnies on a Pope JP-II-blessed Jubilee cloth, that’s the real spirit of Easter.

display of stuffed bunnies

Ash Wednesday

~ Bethany ~ Leave a comment

I can’t believe it’s been two weeks since my last update. They weren’t kidding when they said that these chemo meds would be much more toxic than the ones I was on in 2015 — the extreme levelling up of the side effects alone is proof of that. I’ll write more soon about the actual chemo and side effects (I’ve even started drafting that post!), but it is Ash Wednesday so I’ll go for the timely post and some of my thoughts on that.

jar of ashes for service
photo credit: Flickr user Lawrence OP

First, I encourage you to read “For Sisters With Nothing Left To Give Up For Lent” by Candice Benbow. Although I’m not the target demographic, Ms. Benbow’s words moved me and made me think that maybe finding ways to embrace the resurrection during Lent wouldn’t be a sacrilege, but an active good that God might be encouraging me toward.

You know how I mentioned side effects? Yeah, they’ve been seriously awful and draining. Those side effects have included literally days of nausea and seasickness so bad all I could do was close my eyes, as well as more than 24 hours of excruciating pain throughout my entire jawbone so bad that, even with my dose of oxycodene doubled to 10mg, an ice pack around my face, and literal numbing gel rubbed on my gums, I was still rating the pain higher than I’ve rated post-surgical abdominal pain (oh, and 3 days later, I still can’t eat anything that requires actual chewing), plus others like insomnia, hellacious heartburn leading to exorcist imitations, and the expected bone pain that was mostly managed by the oxycodene.

You know the end result of all those side effects? I’m fucking tired. Note, I am not looking for advice or solutions or answers for those symptoms. My doctors understand and encourage complementary medicine. We are discussing ways to cope or avoid issues. Every cancer and every chemo is different. What might help Susie, could kill Bethany. I’m sharing because I think it’s important to share and because it relates to my thoughts on Ash Wednesday and Lent.

In addition to those side effects, there have been times I would have given damn near anything to call my dad. It is not okay that he’s not here for me to call and talk to when I’m miserable. I do not understand why God would allow my dad to die less than a year before my mom has to watch her youngest go through this. She shouldn’t be alone. Yes, she’s strong, but I know that Dad and she got each other through the last time I had chemo. I know life’s not fair, but right now it seems horribly unfair and awful to go through this without Dad.

Plus on top of all of the personal stuff, there’s the horror show that is the United States right now where, just as a cherry on the shit sundae, a literal Hitler Nazi program was announced by our president and people actually applauded (VOICES is a lot like a program that tracked and publicized crimes attributed to Jewish people in an effort to whip up anti-semiticism so no one would mind when the govt started killing them, in summary). That infurirates me. Every single damn day horrible things are happening and the only people who seem to be speaking up about it are those of us who tried to prevent this dumpster fire in the first place.

Then, because of all that, people are feeling emboldened to be violent, racist, horrible assholes. Bomb threats are being called into JCCs all across this country. A friend is seeing her student, who describes himself as “a young brown man,” has experienced more harassment and hassling from police and others in their town since November than in his entire life before then. He’s not the only one, but he’s the one who said something to my friend. It’s heartbreaking and wrong.

I think I’d be significantly less frustrated if people who I know voted differently were also sharing on Facebook about the Nigerian man who was detained and asked to answer computer science questions because a CBP official thought he didn’t look like a software engineer or how wrong it is that CBP was checking identifications of passengers disembarking from a domestic flight, or the insanity of associating HBCUs with “school choice.” But they’re not, and that adds to this impression that the world is burning around me because not all of those who people who voted that way are bad people. Many of those ones who I know are good, decent people who were angy or felt like they had missed out. They’re people who I don’t think I’m wrong to expect that they be outraged over Muslim bans or human rights abuses.

So, physically, emotionally, and spiritually I just feel spent. It’s the start of Lent. I’m writing this before I even get my ashes (we’re going to an evening service), and the thought of trying to give something up for Lent? The thought of spending 40 days thinking on the idea that we are dust and to dust we’ll return? I’m really well aware of my mortality and the ashes seem like one can taste them in the air.

However, focusing on the life part? That intrigues me and I find myself waking up a little for that. Maybe I need to focus on the first part — that we come from ashes. So yes, things are ash and awful right now, but good can rise up out of those ashes. Despite the personal and political awfulness that is going on, I have to believe that we can follow Christ into resurrection and new life.

In the Stations of the Cross there are good people like Veronica, the woman who Tradition says wiped Jesus’s face to soothe him. In the midst of Jesus’s suffering, there was kindness. Ultimately, there was new life. In the midst of my personal suffering, there is a bounty of kindness. Perhaps my job is to share that kindness with the world.

 

Let Everything That Hath Breath

~ Bethany ~ 24 Comments

I noticed a window at church today that I haven’t noticed before.

stained glass window with the words "Let everything that hath breath praise the Lord"
If you can’t read the words, they say “Let everything that hath breath praise the Lord”

Inappropriate as it might seem if you read a little further, I had to bite back a chuckle. “Okay, Lord, here’s the deal even though I don’t think that’s quite how this works — you let me continue to have breath, I’ll continue to praise you,” I semi-seriously prayed.

See, the scans show that I have some small cancerous nodules in my lungs. Although small is good, multiple cancerous nodules in my lungs (both of them) is bad. Really bad. That cancer-related word that begins with “T” bad. Cure is no longer on the table and the focus now will be on quality and length of life. Not a focus you ever think you’ll face in your early thirties.

I’ve tried and failed to write this post multiple times. I’ve told a number of people directly. If you’re not one of them, don’t take it as anything personal. It just gets really hard to have that conversation over and over.

I’m scared and trying to have hope. I need prayers/hope/spells/vibes (however you name it, it’s the same thing to me). I’m “not in end of life stage, yet” according to Doctor Fader, so that’s good. So long as I’m alive, I believe that there is a chance for medical progress and the improbable miracle of a cure. Science is amazing and incredible discoveries are being made around the world every day.

I will say, in the line of incredible discoveries, I am frightened by the implications that the current immigration ban has for continued scientific development and medical research in the United States (a lot of doctors and researchers are affected by the ban), but England, Canada, and the rest of the world aren’t scientific slouches. By the way, I’m mostly horrified by the ban because it means that the administration is fear-mongering and acting in a fashion that makes America far less safe and will lead to more refugees dying because our country still hasn’t learned from our mistakes in WWII when we refused Jewish refugees because “America First!” I’m not yet 100% selfish.

Back to me, because I am somewhat selfish, I don’t have a real timeline yet. I pressed hard on whether I’d get to see my beloved two-year-old nephew graduate high school and was told that wasn’t likely at this time. As one person described it, any idea of a cure is as improbable as winning the lottery. However, I’m not giving up hope.

You might think that my hope for a cure is denial. I argue that it’s the only logical thought for a stubborn lady who grew up seeing 9th inning rallies bring a city screaming to its feet, and who is still Catholic enough to believe in miracles and the power of prayer. I know that somewhere out there in the world exists a cure for my sarcomas. It might be in clinical trials, it might not even have been discovered yet, but it’s not an impossibility. I refuse to accept death so easily. My faith tells me that despite how willfully ignorant humans can be, and how much the current administration in the United States is trying to fight science, collaboration, and access to medical care, there are good, brilliant people who will fight that and even more brilliant people who are constantly searching for ways to heal people.

I believe that my responsibility is two-fold. First, I need to fight the administration so as to make it possible for researchers to collaborate and make scientific breakthroughs, plus make it possible for me (and others, again I’m not 100% selfish) to continue to access and pay for the medical care I’ll need as I move forward. The second part, is that I need to do all I can to stay alive long enough for that cure to be found.

To that end, I’m working on building up my lung capacity and getting improving my physical health as much as I can before I start treatment. I’ve asked a friend who teaches singing to teach me breathing exercises to help me breathe as efficiently as possible. I’ve started weekly acupuncture aimed at supporting my immune system and lung function. I’m trying to eat healthier. And, perhaps the hardest of all, I’m asking for help — with the healthy eating, with forcing me to walk, with making sure Jarrod gets breaks to take care of himself, etc. If you’re able to help, please make sure my sister has your email address. She’s being a total badass rockstar and organizing things because I’m overwhelmed by that right now.

I meet with a new specialist on Monday who will know about clinical trials and possible treatment plans for me. Jarrod and my amazing brother-in-law will be with me. Likely, I’ll have some form of chemo followed by a break to recover, then chemo, then a break, etc, etc.

Hopefully I’ll still get to attend my cousin’s wedding in October. Hopefully Jarrod and I will be able to visit the Holy Lands before I feel too weak. Hopefully I can balance everything. I’m hoping to keep working as long as I can for a number of reasons. There’s the practical one of my health insurance benefits and I kind of need those, plus income is useful. However, I also like to be of use to the world. I do think that both my day job and my side job contribute to the good in the world.

People learning how to donate organs or request grants to become nurses leads to more lives being saved. People reading news stories about cats and dogs saving people is a source of hope and my way of lighting a candle in the darkness. That’s how I look at my day job and my freelance writing. I may not be on the front lines of animal welfare, but I do think I’m contributing to the good in the world.

I am scared. I’m incredibly afraid. I’m afraid of how painful chemo will be, how grueling the regimen might be, how tired I’ll get, whether I’ll be able to do all the things I want before I get too weak, whether I’ll be a burden to my friends and family in my desperate desire to stay alive. Most of all, I’m afraid of giving up. I’m afraid that I won’t be as strong as I want to be and that I’ll give up. I’m afraid that I won’t be able to force myself to go for walks and attempt to exercise and that’ll lead to my lungs giving out.

Doctor Fader said that the good news is that I’m young, I’m strong (I’m trying to believe her on that), and I have one of the best support systems she’s ever seen (which I know is absolutely 100% true). I need the people who love me to help me stay stubborn and strong, to have willpower for me when I don’t, and especially to simply be there for us and share this heavy burden.

I believe in a God who literally took on the form of a human being and walked among His people, curing the sick, and even raising the dead. I believe in the miraculous and the scientific. Plus, I’m from Cleveland. That means that I know that no matter what the odds say, it ain’t over ’til it’s over. I’m still alive and that means I have a fighting chance, regardless of what the odds say. I’ll just need a lot of help making sure I keep fighting for that chance.

So This Is Christmas

~ Bethany ~ 2 Comments

“Uh, Bethany,” you may be thinking, “you’re posting this on Boxing Day, not Christmas Day.” Well, it’s still the Christmas season, so it’s still Christmas.

We tend to gloss over it, but Christmas is actually more than one day. That old song, “The 12 Days of Christmas” is a reference most of us who celebrate even secular Christmas know. Those of us who celebrate religious Christmas likely have the “season of Christmas” referenced in our liturgical calendar.

I’ve always been a fan of the season rather than just the day of Christmas, and this year it’s particularly helpful. All month I could feel myself getting more and more stressed and angry as we approached Christmas. It felt so wrong to have a Christmas without Dad. I know that most Christmas-celebrating people eventually experience one without their dad. Ever since I was diagnosed and told to not look at 5 year survival rates (my tumor make up was weird, I’m a really weird age for my type of cancer, etc), in the back of my head I’d just assumed that Dad would outlive me and I’d never have a Christmas without him.

And now, I’m one day into my first Christmas season without my dad.

Wooden cat ornament, wooden carved creche, ornament with a picture of a grey cat.

My mom is in town for the holiday and her birthday which is really good. We went to a Blue Christmas service at my parish which helped. It didn’t take away the pain and grief, but it helped to be with others who were sharing in worship and grieving their own losses. In the service, we named our feelings and their bittersweet nature, and hung ornaments that symbolized our losses. Being in community and taking the time to acknowledge our grief helped. I suspect I’ll go again next year, since I expect next year will also be difficult. Though, I do hope it’s a little bit less difficult at least.

I’ve felt sharp spurts of anger every time I see or hear anything like “It’s the most wonderful time of the year!” or “it’s the season for joy!” For me, it’s not. It’s a hard time of year and I haven’t felt especially joyful. The worst are signs like “Be Joyful!” because the angry, spiteful part of me looks at that and says “Nope. Not going to happen.”

Wishes for joy or peace, those don’t bother me and seem kinder. Yes, let’s wish for joy together. Let’s hope that we have peace in the world and in our hearts. It’s not that I don’t want to be joyful, more that I can’t stand a command performance of joy.

So was there joy yesterday? Yes, there were moments of joy. I also felt ill which might have been rich Christmas Eve food combined with All the Feels (my emotions often express themselves physically to me). There was definitely sadness, but there was joy. Seeing my nephew’s face light up when he saw the Corduroy bear peeking out of a gift bag from his parents and hearing him yell in his toddler accent “CORDUROY! CORDUROY!!!” — that was a moment of joy. Snuggling with him while we read Corduroy and My Name Is Bob was lovely. Talking with friends was joyful. Exchanging gifts with my family and seeing that we’d picked well was joyful, if bittersweet at times.

Today we’re meeting for lunch and going to ZooLights in the evening. It’s still bittersweet and hard. I’ve already sobbed once this morning (not fun when you already have a massive sinus headache). However, this is Christmas.

There’s a lot I’m still reflecting on from #FuckThisShit and #RendTheHeavens, but a big one is that the first Christmas was messy and a mix of pain and joy. Mary gave birth in a smelly, dirty stable. It was cold and she had strangers coming in while she was probably still dealing with afterbirth. Christmas isn’t just the singing choirs of angels, it’s the family being turned away at every inn. It’s dealing with fear and holding things in one’s heart. It leads to wise strangers warning that family that their infant’s life is in danger so that they must flee to a strange land.

Christmas is messy and a mix of emotions. I think that’s okay.

Hope Isn’t Easy

~ Bethany ~ Leave a comment

The usual TW of discussion of my religious beliefs as well as some profanity. Also this is a really long post. No apologies for that, consider yourself warned.

“Clusterfuck” That’s the word for today’s reading in the #FuckThisShit devotional calendar. I saw that, and before I even opened my Bible, I found myself laughing and shaking my head. Because yes, that is the word for how my life and how this world, this country feels right now. It feels like everything is in a giant clusterfuck.

On the corresponding, not so NSFW, #RendTheHeavens calendar it was “Roll(Out)” which just made me think of Transformers. My husband had great memories of the show while I had never even seen a single episode of the show. So, early in our dating, I bought the DVDs and we watched the original show together.

Thinking about Transformers reminds me of optimism. The Autobots were always able to save the day with (other than in the movie) no deaths (because, well, kids’ show). It also reminds me how simple life was back in that studio apartment where we watched the episodes together. We didn’t think about life-changing illnesses or sudden heart attacks.

It’s not like life was 100% perfect. We dealt with job loss and the search for a parish home. But, there wasn’t anything big that challenged my optimism. I remember while I was between jobs, after receiving another “we really liked you, but that one other final candidate had just a bit more experience” email, I decided to call my dad.

I was frustrated and worried I was letting him down. However, Dad assured me that I wasn’t letting him down. Actually, he was proud of me. He liked that I was reaching for my dream of making a difference. He was also certain things would work out. He was right, of course. Within a few months of that call I was working for my dream organization with one of the best bosses I have ever had.

For most of my life I have proudly identified as an optimist. Until mid May 2016, any time I felt that optimism wavering, I could (and generally did) call Dad. I wasn’t naive and I didn’t think things would always be perfect, but I never had much trouble finding hope. When I did struggle, Dad would have the words to help me.  I had my crabby moods and frustrations, but also hope and faith that things would work out — that hard work would pay off, that I could change the world because the world was always getting better even if it needed a push, that I could get through anything.

Part of why I was proud to be an optimist, was because it was something I shared with Dad.

Then I lost my dad to a sudden, unexpected heart attack. Then I learned my cancer was back. Then the tumor turned out to be much bigger than expected. Then my beloved cat got so sick he needed surgery followed by an emergency blood transfusion and a stay at an intensive care facility. Oh, then there was my radiation treatments. Plus shitty things happening in my friends’ lives.

Plus there was everything going on in our country and in the world. The massacre at Pulse; anti-immigrant and anti-refugee talk; bombings causing people to need to flee their homes; a candidate for president treating sexual harassment and assault as no big deal and people I’d previously respected claiming “that’s just locker room talk” (no, it isn’t); overt racism; people saying crap like “blue lives matter” while acting offended by the idea that black lives matter; somehow the most overtly racist, in-bed-with-a-foreign-power, neo-Nazi-enabling, anti-feminist, completely unethical fraudster of a candidate won the Electoral College (with Russia’s help); the whole of the GOP rolling over, including saying that it doesn’t matter if the president elect tweets falsehoods; acts of vandalism and violence from the fraudster’s supporters; the continuing destruction of Aleppo; the daily desecration of this country’s Constitution; and so much more.
image of a deep well with a branch across the topMy optimism isn’t so easy to find in the clusterfuck that life seems to currently be. At times it feels like my faith and hope that things can improve, let alone that they will improve is barely present. My hope seems like a cheap and dying flashlight at the bottom of a deep, dark well. I worry that maybe I’m not an optimist anymore, and that sucks.

At a time when I most need to have my dad with me, the aspect of him I most identified with feels like it might be gone. I’m not as generous as my dad was. I’m certainly not as calm and logical. There’s a lot about him that I don’t share, or at least don’t share now, and am not sure I’ll share again. That’s scares me.

But I do share his faith. Dad always said he suspected God was either laughing or crying (or both) at the divisions we humans make. So to Dad, the fact that his parish was Roman Catholic and mine is Episcopalian really doesn’t matter. It’s the same faith at heart.

While talking with my husband last evening, he suggested that my faith and wanting to be an optimist, are optimistic in nature. The fact that I haven’t given into total despair, that I’m not certain things will always be the darkest timeline — that’s hope and hope is a form of optimism.

And I do have hope. It’s dim, but it’s there. I hope that things will get better. I still think it’s worthwhile to fight for equality regardless of gender, race, creed, or sexual orientation; to speak out for animals; to care and not retreat into my own bubble. I think it’s worthwhile partially because I couldn’t live with myself if I ignored injustice. However, I also think it’s worthwhile because I think the fights can be won. It won’t be easy and we’ll suffer defeats. We won’t immediately stop the violence and mistreatment. But we can and will prevail, so long as we don’t stay in despair.

So what’s today’s verse? Revelations 22: 18-19

I warn everyone who hears the prophetic words in this book: if anyone adds to them, God will add to him the plagues described in this book, and if anyone takes away from the words in this prophetic book, God will take away his share in the tree of life and in the holy city described in this book.”

I don’t have an easy interpretation. It’s the type of verse that makes me hesitate and even worry a little. Is it adding to the words to write about them? To understand them only in English? Is it taking away from the words that it’s been a long, long time since I tried to read the entirety of the Book of Revelations? I don’t know and that leaves me with some fear.

Underneath that fear? There’s hope that this someone comes back to the core faith that God so loves this world, and that somehow there are better days ahead. Somehow I have hope that the world can be healed.

In the words of a Jesuit from Xavier: “Hope is not answers or solutions, it’s faith that something is waiting for us, that there are possibilities. Hope isn’t easy.”

Nothing worthwhile ever was easy.

What Sort of Person

~ Bethany ~ Leave a comment

TW: Swearing, Christianity, Progressive Politics

After reading the Medium piece by Jessica Vazquez Torres on today’s #FuckThisShit/#RendTheHeavens, I was torn. I had two competing, though complementary, responses to the daily prompt. One was simply a response directly to the prompt. That’s what’s in this post. The other was a response to the prompt in light of what JVT’s piece brought up for me. Because I couldn’t decide which to write, but knew they were separate enough to not belong in one essay, I’m writing two essays to one day’s prompt. Given that I’m not writing daily, I’m okay with that. Today’s daily prompt was “(DIS)COMFORT: 2 Peter 3: 11-13:

Since everything is to be dissolved in this way, what sort of person ought [you] to be, conducting yourselves in holiness and devotion, waiting for and hastening the coming of the day of God, because of which the heavens will be dissolved in flames and the elements melted by fire. But according to his promise we await new heavens and a new earth in which righteousness dwells.

Instead of using Google to pull up the passage, I felt pulled to get up from the couch and grab my old New American Bible I received 17 years ago (August 27, 1999 to be percise). I received it in my freshman year theology class at my Catholic high school. I forget the official name of the fall semester class, but I remember the teacher telling my class that we should question our faith and question what we believe, because unquestioned faith was untested faith, and testing would make our faith stronger. She actively encouraged our questions, and discouraged feeling any guilt about questioning our faith. That encouragement has stayed with me, even if I no longer can tell you details about the lives of all the prophets we discussed in that class.

I’ve changed a lot in those 17 years. A lot of that is because of times when I’ve pushed myself to embrace discomfort. Two of my favorite people in college were (and still are) nothing like me on the surface. I remember one, Casey, commenting my senior (her junior) year that she was sometimes amazed that we were friends. She and I had different personal views on dating, religion, sex, post-college goals, political activism, and reproductive justice. She wore dark eye makeup under a huge hat with long hair and often gestured with a cigarette. She didn’t gesture with the cigarette if we were indoors, I had a cold, or there wasn’t a stiff breeze taking the smoke away from me. See, I was an asthmatic who hated cigarettes. My general style was somewhat preppy with the occaisonal peasant top or loose skirt while her style was dark bohemian. We were not at all the sort of people you’d think either of us would be comfortable around, but we made each other better people. Or at least, I know she made me a better person precisely because of what about her could be discomforting to my 21 year old self.

More recently, there’s a theatre that my husband and I love, Forum Theatre. They’ve won awards and they have intense, amazing shows. I rarely watch sad television or depressing documentaries. I don’t like books that are devoid of hope. I don’t enjoy absurdist or abstract films. I get that all sounds anti-intellectual, but it’s who I am.

The shows at Forum looked like they would discomfort me and challenge me. I was intrigued but it took effort for me to embrace the likelihood of discomfort and challenge, and realize that I needed that in order to grow and be a better person. Again, I’m so glad that I embraced that discomfort.

two programs for Forum shows
Programs from Forum Theatre

Forum shows do always discomfort me, at least a bit. They challenge me and make me ask questions and look at societal issues in a different way. Some of them I saw multiple times because I want to catch new nuances and see what new ideas they bring up. They’ve pushed me out of my comfort zone and into the experiences of other people, people who initially can seem so different from me and whose actions can otherwise seem so inexplicable. Thinking about Pluto, which deals with a shooting at a community college, still makes me uncomfortable because it showed me how to identify with someone I’d more comfortably consider a monster.

So what does all that have to do with 2 Peter 3: 11-13? Because it’s part of the sort of person I want to be, the sort of person I think I’m called to be. I don’t think that any of us are called to be totally comfortable all the time. I think that we grow by pushing ourselves outside of our comfort zone. Whether it’s friendships or theatre, or something else, we cannot live in comfortable, homogenous bubbles if we want to really know the world that God created and that I believe, as a Christian, I have a responsibility to help change into an “earth in which righeousness dwells.”

Discomfort is not always easy. I have anxiety for which I take medication. It would probably be easier to only do things that are comfortable, but that’s not what I’m called to do. Sometimes it takes deep breathing or medication, but I’m not going to let fear of discomfort keep me from being the sort of person I think I’m meant to be. I’m going to do my best to embrace discomfort so that I can become the Christian I think I’m supposed to be.

How Can I Look Towards Christmas?

~ Bethany ~ 1 Comment

TW: Christianity, Swearing

Starting Advent, looking toward Christmas, is hard for many people this year. It’s easy to feel like our world is broken. It would be easy to just say “Fuck this shit!” I don’t blame anyone who does. There have been moments that I’ve said that with full passion and conviction when I just can’t find the strength to keep hoping and working and trying.

Whether on the personal or the global level, it’s easy to see pain and wonder how that could possibly connect with singing “Joy to the World” or “Silent Night.” How can we watch Rudolph, listen to Christmas music, or put up lights when our hearts hurt?

XMas Lights on black background from Flickr via Wylio
LadyDragonflyCC, Flickr | CC-BY | via Wylio

For me the pain is layers of personal and societal. I hurt for missing my dad. I desperately miss him. I miss knowing that Christmas will come with his jokes about the real tree vs a fake tree, his enjoyment of my husband’s signature Christmas Eve margaritas, his voice singing Christmas songs as Christmas Eve mass, throwing wrapping paper at him as we open presents,  the good natured ribbing as he and my mom try to remember which wrapped gifts are for which recipient, the Star Trek books he’d give me that I’d share with him after reading so that we could talk about the characters we still loved more than a decade after they went off the air, the looks of love shared between him and my mom as they exchange their Christmas presents — both clearly delighting in having found gifts that brought joy to their beloved. I can’t think for more than a minute or two before I start crying. It’s hard to focus on the joy of those memories, of the joy of Dad’s clear faith and belief, of the joy of my imperfect family sharing love and laughter and our traditions of burritos, oplatek, cheese plates, and Mannheim Steamroller.

I hurt for wanting to hope for my own health. I won’t know for six months and I know that worrying does no good, but it’s a struggle to not focus on that. It’s a worthy struggle to find my inner optimist and have faith that everything, no matter what the six month scan shows, will be alright in the end — even if it’s alright in a way I cannot possibly imagine.

I hurt for friends dealing with personal difficulties and stresses related to divorce, jobs, children, and more. They’re not my stories, but I hate that people I love are in pain.

I hurt for the world and for my country. I hurt for the individuals so ashamed of their vote that they act as cowards and stick their heads in the sand, refusing to take any action to help the people already being harmed and harassed because of the vote they chose to make in determined ignorance of the facts that were plain to see. I hurt for my friends who are any sort of not heteronormative straight white people. I fear that my friends who are witnessing harassment will be harassed or harmed themselves. I fear that friends who are public school teachers will witness the destruction of public schools in the United States by people who have no understanding of the need for public education. I see pain and hate in the world and it’s easy to question how that connects with Christmas stockings and trees covered in lights and ornaments.

But, those stocking and trees are just part of Christmas. Christmas is also about three magi bringing gifts fit for royalty to a poor family huddled in a stable outside an inn in a major city of an occupied country. Christmas is also about God asking for faith that things will turn out okay in a way no one really imagined.

Christmas is also about hope coming not in the form of one who was powerful, but in the form of a squalling baby born to a Jewish family seeking shelter and care while travelling against their will, living under the rule of a powerful occupying country. It would have been easy to look at the young pregnant woman and her husband, huddled in the straw, and say that their lives would be hopeless. It would have been easy for Mary or Joseph to give up their faith. Maybe for a few minutes between Mary’s saddle sores or Joseph’s blistered feet, as they were unable to find an actual room, as they prepared for Mary to give birth without any help in the straw, surrounded by animals, maybe they did find their faith dimming. If so, that’s okay. They still came together for the birth of a baby who would change the world and bring hope to the hopeless. They welcomed shepherds and foreign wise men. They found hope in a situation many of us would have called hopeless.

I’m not saying that makes everything okay, or means I’ll be able to jump both feet into Christmas this year, but it’s what I’ll keep coming back to. Christmas is about hope coming from what can seem like hopeless circumstances.

“So you also must be ready, because the Son of Man will come at an hour when you do not expect him.” — Matthew 24:44

Maybe that also means that hope can be found when we least expect it. That’s something my dad would have gotten behind. He always said that there was something good around the corner, just often enough to keep him believing. I’m going to choose to try to be hopeful, even when it’s hard.

–Inspired by #FuckThisShit/#RendTheHeavens Advent Devotional Calendar by @crazypastor and @tvrasche, though admittedly a few days late. The passage from November 27 is one that has been rattling in my head ever since I discovered this as a way into Advent that my tired heart not only could handle, but seems to have needed.