I’ve written before about the True Self. It’s something I come across in many works– spiritual, self-help, even books on sports psychology. Being in this flow of the True Self feels great, like a heavy burden has been lifted. I think our daily lives in this modern time (before COVID) make it very difficult to go into this state, but it is achievable if approached with great intentionality. (Side note: There is no “false self”, there’s only a shadow of the True Self. But when you view things from a lens of True Self and see lying, deception, manipulation, and selfishness it becomes easy to think that a “false self” is a real thing. I think HBO’s Succession should be subtitled How To Be The False Self.)
Today, I believe the biggest obstacle to achieving this state are the limitations required of us due to the COVID pandemic. Wherever you lie on the spectrum on caution during this time, it’s impossible to go about your life with the choices you had, say, a year ago. You can’t gather with friends, except with very careful precautions. You can’t strike up a conversation with a stranger on the street and shake his or her hand. You can’t even take a walk without being cognizant of physical distance and face masks. I heard someone on a podcast say something to the effect of, “I’ve never been so afraid of the word ‘droplet’ in my entire life.”
All of these things add up. You can find an analog in mental states as you work– the deeper you get into ‘flow’ the easier the work becomes, to the point of seeming almost effortless. But phone calls, meeting reminders, text messages, and social media internet breaks quickly disrupt this flow and make it difficult to find your place in your work again. In the same way, face masks, distance precautions, and keeping up with case data keeps us from entering into our True Self flow state.
All of these COVID precautions are distracting but they are not measures we can ignore. To eschew these recommendations and live your life as if nothing is wrong is not to live in your True Self state– rather, putting others at greater risk in exchange for your own spiritual freedom is more akin to pure, self-interested ego. I am not advocating for ignore safety measures during COVID. But I do mourn for the loss of achieving that True Self state of being.
Psychologist Linsday C. Gibson writes about the development of a “role-self” when we are around our families. The idea is that instead of being yourself around family members, you end up serving a role over and over again, and that becomes the self you inhabit when around them. I think with all of the time we’re spending around each other during this time of staying home and distancing that we are all most likely playing these roles and not being ourselves, and not able explore our True Selves.
With all of these constraints and limits, your composure will suffer. It’s important to realize and remember: we are not our worst moments.
It’s been very difficult for me to find solace in all of this. I can get temporary escapes but very seldom am I able to tap into the ability to find that space where pressures don’t matter and stress doesn’t exist.
The only place I’ve been able to find it is to retreat further within myself through meditation. To say my mediation practice hasn’t been as steady is a gross understatement. Only in the last few weeks have I been able to pick up the pieces and take it up again– realizing that practices are superior to routines. And while the short daily 10 minute meditations are good, what’s needed is the deep 50+ minute meditation. I’ve only been able to do it a handful of times since COVID but it’s been the only glimpses of that True Self when I do. And that taste stays with you for a long time.
If you read one book, watch one movie or show that I talk about on this blog: WATCH THIS DOCUMENTARY. You can stream on a PBS app or you can just click here.
This past Monday (4/27) PBS aired a documentary on their Independent Lens program. Jim Allison: Breakthrough serves as a part biography and part history of cancer treatment. Although the documentary is an hour and half, it feels like it goes by in 20 minutes.
Jim Allison is the reason I’m alive and well today. His work led to the development of the drugs used for all immunotherapy treatments. He spent half his life chasing his own theory on effective cancer treatment and then finally found an indisputable medicine using the body’s own immune system. But just because you have a cure for cancer doesn’t mean it gets made and distributed. Allison has dedicated the rest of his life (not just professional career– his life) to making sure that this treatment got developed and distributed. And it was quite a war.
One of the things this documentary shows to you is that even with incredible breakthroughs and solutions, it still takes the mechanism of the business world to implement those solutions and put them on the streets. Many times businesses don’t have the courage to do it. It’s much safer not to spend the money, not to take the action, not to incur the possible liability. We live in a very real vetocracy. It’s a system that nearly kept one cure for cancer from getting to cancer patients! Jim Allison, for very personal reasons, refused to let his cure die on the vine. And he wasn’t alone– there had to more champions within business to make this happen (specifically, Dr. Rachel Humphrey).
The documentary also features someone who was diagnosed with melanoma in her 20s in the early 2000s. This was before immunotherapy had been accepted as a possible treatment for melanoma. Despite conventional cancer treatments, the tumors spread to her brain, leaving her with metastatic melanoma– my same diagnosis. Through various twists and turns, she becomes one of the first patients to undergo immunotherpy. Her tumors disappeared. Completely.
There is a chance moment when her doctor gets to introduce her to Jim Allison, the inventor of the treatment that cured her. In recounting that meeting, she says these words:
I just couldn’t talk.Sharon Belvin
How in the world are you suppose to adequately thank somebody, standing across from you, that you are 100% positive that without them you wouldn’t be here?
There is no “thank-you” for that.
Those words touched me. They have a lot to do with what I write about in this blog. This sense of “There is no “thank-you” for that.” I’ve called it grace. Maybe it’s something that can’t be contained in words at all– something ineffable. But it is real. I’m living proof.
Again, WATCH THIS DOCUMENTARY! Look for Jim Allison: Breakthrough on PBS’s Independent Lens series, or click here. You’re in for quite a ride. Jim Allison does not project the scientist-curing-cancer vibe you might imagine!
I am grateful for my cancer. Cancer has taught me to focus on the moment. No matter what happens to me, nothing can take away the moments I’ve lived in. It is impossible to fully take in a moment without love. Without love there is no inner peace, there is no stillness. Can you imagine fully appreciating a hot shower, a quiet walk, or looking out at the stars without love?
I’ve read that 99.9% of our universe is composed of empty space. But I don’t think so. I think it’s composed of love. It’s hidden in plain sight, right in front of us, waiting to be taken in.
Yes, there is also great suffering. But suffering can show us how love unfolds. It can show us the infinite dimensions of love.I don’t know why we need suffering to really see it, but we do. Suffering forces us to focus of the moment with sharp resolve.
There was once a man who was running in through the jungle, chased by a hungry tiger. After breaking through a clearing, he came to the edge of a cliff. The long fall into the river below would be fatal. The tiger forced the man to stumble and fall but he grabbed onto the edge of the cliff with his hands. The tiger was relentless and started for the man’s hands. The man saw a branch growing from the face of the cliff just below him and he managed to grab onto the branch with his hands. Dangling from the branch, the man saw a plump strawberry had sprouted out of some greenery on the branch. Hanging on to the branch, he reached out and grabbed the strawberry and popped it into his mouth. “This strawberry tastes delicious,” he said.
I remember the first moment we decided that we were going to shutter-in because of COVID. It was March 13th and I ran some errands. I was at Publix and I felt like I knew a secret no one else did– I loaded up on food and milk to get us through what I hoped would be a couple weeks (it wasn’t). It was a Friday so it was easy to slide into a typical weekend routine and just tell the kids we were eating at home and not going out for meals.
Then we woke up on Saturday and it’s been the same day ever since. No work to go to, no school for the kids.
I’ve got the flu. It was very bad Tuesday night and all of Wednesday.
When you’ve got flu-like symptoms no one wants to see you. The cancer center didn’t want me to come in at all even though this is the lowest I’ve felt since my fainting / fever spell in December. I considered going to the emergency room.
I went to urgent care and strange enough, I tested negative for flu. The doctor immediately starting talking about false negatives. The paperwork I left with still says I have the flu. I know what you’re thinking– don’t think that. It’s not. Is it some universal joke that after I survive the big C-word that now’s there’s another c-word that’s scaring everyone? Another c-word. Great.
[Preface: I have amazing support from my family, Paige, my church, friends, doctors & other health professionals. I am lucky. But it’s still a struggle.]
“It’s a terrible thing, I think, in life to wait until you’re ready. I have this feeling now that actually no one is ever ready to do anything. There is almost no such thing as ready. There is only now. And you may as well do it now. Generally speaking, now is as good a time as any.”Hugh Laurie
For me, the revelation came after a sequence of words. Like a certain combination and cadence unlocked a door. “You’re not feeling yourself today, are you?” That was what my nurse asked at my latest cancer center check-in. Before the question was even done I felt the tears welling up in my eyes and then hot streaks down my cheeks. “No,” I answered weakly.Continue reading “Everything and Nothing”
On Monday I had to go to the DMV to register a vehicle. I had planned for it to take the entire morning. Most depictions of the DMV regard it as a sort of place of misery and torture- it’s comically referred to as hell and the workers there are often cast as uncaring, cold, and lovers or bureaucracy.
But for me, the second I walked into the office door, it was completely different. Yes, there was a long line, but I like lines and I am carefully not to take out my phone during lines (I’m a believer in the right to be bored). The line twists around in a strange way that it required some pacing around to find the end. Once there, I saw other people come in and do the same thing. The line snakes in front of the entryway so people in line had to move for the door to open. As opposed to being annoyed or giving off frustrated sighs, people gladly moved and helped others find the end of the line. When I looked around I saw every sort of person in the City, every color, well-off and not-so-well-off, lots of different nationalities. People were being friendly in line and making each other laugh.
I think the last time I was in a public place for government business was to vote. The lines and demeanor there was completely different. Everyone tight-lipped. Anxious sighs and glaces at watches. People guarding their space carefully and making sure no one cut the line.
The DMV was a welcome change. A lady in line in front of me helped a younger gentleman with all of the paperwork he’d need to complete his task. He realized he was missing some items and left the office. The lady called out from the door, “And you’ll have five days to change your insurance!” She’d either just been through the same thing or was an expert in DMV procedure.
I got to the line and told them why I was there, showed them I had the paperwork, and got a ticket. I took a seat and waited. I was called up and the nice lady at the counter helped me out and asked if I was ready for Valentine’s Day. This is how cancer survivorship can just come up in conversation. I told her I wasn’t sure, we’d been talking about just agreeing to not doing anything given our state at the moment, and it’s been rough going for a bit. She genuinely looked concerned and asked why, and I mentioned survivorship. She was sympathetic for me, but still urged me to do something for my wife like cook a meal or get her something small. She had this conversation with me while working on all my paperwork. She finished and wished me well, as I did to her, and I was on my way. I actually really like the DMV.
There is a certain form of a secret handshake among survivors. A knowing nod. A recognizable depth to the eyes. When a person has gone to the edge of the unknowable and yet is still present in this world, that person cannot hold themselves the same.
Survivors speak the same language. Cancer has its own vocabulary. While some forms might require new terms or lingo, we still understand each other– like an American and a British person speaking to one another.
One afternoon I was in a doctor’s exam room. It is actually one of Paige’s doctors. This doctor in particular had advanced stage breast cancer and was absent from her practice for a long while. Eventually, she returned as a survivor but forever changed. On a checkup, Paige heard her story. Then when everything happened to me, Paige told her my story. The doctor and I actually have the same oncologist and radiation oncologist. I remember sitting in that chair and drifting in and out of sleep, exhausted from the high-dose steroid fatigue and lack of sleep.
Continue reading “The Fellowship of Survivors”
Despite some recent health setbacks, I’m not going to start up the weekly updates tab again. Instead, I’ve decided to write a post and then put some health updates at the end for those interested. If you’re mostly concerned with the health update, then jump down to the writing below the 2nd divider.
I’ve been thinking a lot about suffering since New Year’s Day. I’ve endured my own small form of suffering (more on that below the divider) and I’ve read some fascinating ideas about the subject.
Previously, I’ve mentioned suffering in a post with some quotes and anecdotes from Maharajji. “I love suffering. It brings me closer to God,” he is quoted as saying. As I deal with my small issue and think about my trials since last April, I can realize the truth found in that statement. There is something very real about suffering. It forces you to be in the moment. I read recently that some mystics have thought that all suffering is the same, that there is only one suffering. When you suffer, it’s almost a sacred and communal act.
I don’t have anything distilled to impart to you today. No book, no music, no movie. This time it’s just me, typing away about a few things I’ve been thinking about. Hopefully, one of them holds your attention.
My health has been relatively stable since passing out before Christmas. Nobody is really sure what happened to me. I think they threw the kitchen sink at me to get me healthy for Christmas, and it worked. (Kitchen sink = IV fluids, IV steroids, and 7 days of antibiotics.) I took a trip to Tampa with my daughter after Christmas and was there until New Year’s Eve. I started noticing something strange about my stomach and felt some slight head pain.
When I came back home I noticed the head pain was made worse by the cold weather. After some experimentation, I found that keeping my head nice and warm staves off this pain. So sometimes I’m now sporting unseasonably bulky head covers. Wool beanies are my favorite. At a December appointment I found out that there is an small open space between my skull and the titanium plate in my head. The plate is attached to the skull by 16 different screws. But my theory is that the space between my skull and the plate is especially sensitive to the cold and can cause some pain. So hats provide some nice coverage.
The stomach pains lasted for another week and I’m still dealing with them in a small way. It’s tough not to jump to the worst possible conclusion for what’s behind the pain. For me, there’s not much space between “This is nothing, it’ll pass,” and “The sky is falling!” In talking about this with Paige she captured it perfectly, “Ever since immunotherapy, your body is a question mark. So much of immunotherapy isn’t even understood yet, who knows what’s going on in there.” Yep. Today my stomach is feeling pretty good, strangely. Human bodies are weird.
I found out through Paige that Ram Dass passed away before Christmas. I’ve written about Ram Dass on this blog before. I have some of his books and have listened to a collection of his lectures (Experiments in Truth). I think he is a fascinating spiritual figure, drawn to different understandings of suffering, God, being and non-being. One of the anecdotes he tells in Experiments in Truth really sticks with me. He was talking about being on a speaking tour (I think) and checking into a hotel room, feeling exhausted and wishing he was home. In his hotel room, he stopped, and starting to think of himself and his surroundings in a cosmic sense. He started to zoom out from his point of view. The hotel room, the city, the state, the country, the continent, the world, the solar system, the galaxy, the entirety of space. Given the vastness of space, he realized there’s not too much difference between his hotel room and his actual home. This universe and everywhere in it was his home. If I can’t be at home in this universe, what’s the point? he thought. Then he decided to be home, there in the hotel room. He opened the hotel door and shouted into the hallway, “I’m home!” He learned to be home everywhere. That’s a lesson that sticks with me. Be home everywhere. On delayed flights, in doctor waiting rooms, in traffic, at parties when you don’t know anyone. Be home. And you know what? It freaks people out. Next time you’re at a party and you don’t know anyone, try to be home. You’ll see other people become uncomfortable on your behalf– it’s crazy. They’ll say or think, “Why isn’t he talking to anyone? Why isn’t he checking his phone? Why isn’t he anxious?” And suddenly they’ll start talking to you. They’ll leave quickly because you’re not buying into the dominant culture. But you can just continue to be home.
I like the way that Pete Holmes said it on his podcast. He doesn’t say Ram Dass died, but that he “left his body.” It’s like ice melting into water or a wave disappearing into the ocean. As a Harvard professor from a Jewish family, I think he distinquished himself from attention-obsessed pyschedelic drug adovcates like his one-time colleague Timothy Leary. Richard Alpert (Ram Dass) actually went to India to seek deeper spirituality. The appeal of the pyschedelic drugs were gone because they were superficial to begin with. He did not shy away from talking about Christ as someone who transcended all material things.
I do agree with Pete Homles that if you’re interested in his stuff, listen to his speaking as opposed to reading his books (at least, at first). He has stuff on youtube, and two collections of lectures: Experiments in Truth, and Love, Service, Devotion. There is a short Netflix documentary with him called Going Home. I need to see that.
And 2020 is here. I kept seeing all of these lists about the end of the decade. It didn’t feel like the end of a decade to me. But when I read stuff like Kotaku’s The Cost of Being a Woman Who Covers Video Games it’s a reminder of both how far things have come and how deep things have decended. Social change seems glacierly slow but I suppose when you can look back at a decade you can notice some positive advances.