Here, I found one thing to add to my list, just for you.
And here is one more:
That’s all I got.
The guitar lick I just heard in an old David Crosby song
The majesty of the ocean
Having known my father
Bob and Max
Memories of times I have felt well loved
Having known what it feels like to be a mother
Praying Mantis, Ladybugs and Monarch Butterflies
And Dragonfly’s most of all
The truth is dawning on me like a giant fire-filled orb complete with miniature explosions. I see just the bright sliver of it peeking above the horizon. I can’t force it down any longer. My body is weak from concealing it. I don’t want this truth. And yet it is here, and rising.
It leaks out of me in small quiet spaces like here with you or with my closest friends. I can’t bear the weight of it alone any longer. I want to vomit it out but something prevents me. I don’t even want to tell you what it is.
The only thing I know to do with the truth is to acknowledge its presence and breathe in and out. Now that I have been sick for so long, and contemplating the possibility of my own death, I have little patience for even the smallest of untruths. There just isn’t time. Or at least, the amount of time is ever so clearly unclear.
For now all I can do is circle around this truth, neither approaching nor fleeing from it. Did I mention that this is neither the truth I expected, or wished for? My priority is staying alive for my son. In service of my priority, all things that separate me from that which is most important must be eliminated. At least, my mind is telling me this. Or perhaps my soul is telling me this.
Recently I was in Washington State at one of the most spiritual of places, Doe Bay on Orcas Island. The resort has been there for years and has a great hippie commune vibe. I was a frequent visitor there in my early thirties when I first began to “find myself”. They have a natural hot springs and a hot rocks sauna. Clothing is optional. I peeled all of mine off unabashedly, in spite of the cold turning my breath to a cloud of mist. For the first time in my life, I didn’t mind who saw my body or what they thought of it. I was older than most of the people there by a significant amount. I imagined they looked at me as an old wrinkly and sagging elderly person. We chatted back and forth with the sweat pouring off our bodies.
Something happens when people take their clothes off in the presence of one another in a non-sexual way. Suddenly it is so much easier to see the humanity and divinity in each soul. Respect and kindness are given freely. I was so cleansed from the experience. No clothes, no defenses, no useless mind chatter, no LED screens glaring. Just humanity. I was surprised to feel as if I had never left. My thirty-ish self was still there, right where I had left her.
The path to the hot springs and sauna is through a small patch of old growth forest. There were statues of Buddha and Ganesh and a waterfall rushing in contrast with the serene quiet that seemed to say, be still and listen. A sign on the sauna door read The path lies between two opposites. It is this sign that comes to me now, as I contemplate the truth that at that moment had not yet revealed itself.
I’ve sat with the truth for seven days now. It hasn’t changed. If anything, my vision of it has become increasingly clear.
I know what I must do.
Things have been different around here since you left. As a person who knows the high and the low and has envisioned the step you took, I was greatly affected by your decision. Many seemed comforted to find out you were facing a serious chronic illness. As if suddenly it all made sense.
The People magazine with your face on the cover stared at me for too many days from its place on top of the bathroom trashcan. One day I picked it up with a huff, deciding People had retouched your eye color. They made your eyes look too blue, like a black and white movie with the colors painted in. It reminded me of that movie you were in that I can’t remember the name of.
There were a few retrospective shows, some repeat performances, yada, yada. Then with Joan and football as distractions, everybody settled back down into their relative existences.
Today I read a whole magazine about you while I waited in a really long line in Safeway.
Look, what I really want to say is this. I don’t know what was going on in your mind right before you did what you did. But, why hanging? Because you couldn’t take it back?
I don’t want to talk bad about the dead. And I’ve been feeling spiritual lately and thinking a lot about compassion and not doing harm. But I’m pissed.
Look, what I really want to say, and I hope you take it in the best way possible, is fuck you.
Fuck you for going through with it and fuck you for getting to go when I’m still here and fuck you for setting such a fucking bad example and how could you do this to your kids????
How could I do it to my kid? Have I not yet been where you were, in the space right after you cross every con off your list?
Fuck, I’m sorry, Robin. You don’t know me. You don’t owe me anything. You’re just on the receiving end of a lot of things I’m pissed about right now.
That’s about all I’ve got for now, Robin. Except, say Hi to my dad for me, will ya?
After I received my test results indicating that I have Lyme disease I experienced a shift in consciousness that lasted a few days. Finally, an answer for the multitude of health problems I’ve experienced over the last four years, and something to call my illness other than “No, I’m still feeling really sick”. My announcement to the world that I have Lyme disease resounded with the thud of a single pine needle landing in a dense forest. Did you hear it?
Here’s the deal. Most people don’t know what Lyme disease is or even how to pronounce it. Some folks have heard of it and nod sympathetically. Some respond with silence like the person who does not yet know grief when you tell them your loved one died. There are questions, including, What is the treatment? What are you taking right now? Is there a treatment? One well intending relative sent me a web link warning that antibiotics don’t help with Lyme. No, How are you,? I’m sorry to hear…
Welcome to Lyme purgatory. It’s the period right after you’re diagnosed. Most likely you’ve been sick for a long time. You may have lost your ability to perform your livelihood. Your Lyme diagnosis is a doorway into a parallel universe where things will never look the same again. First you learn that Lyme has a group of diehard codependents who are invading your body and doing as much damage as the Lyme. Keep drilling down and you may find that you have systemic candida and a host of other problems associated with the fact that you have been ill for an extended period of time. The body is a web, just like life, and each twitch on the silky string affects the entire web.
As you go along, the Lyme plot thickens. My adrenals are like a couple of goat nuts that have been dredged in flour and left in the deep fryer for too long. I’ve learned some things about adrenals that will fundamentally change how I live my life forever. There are treatments for crisply fried adrenals. But the most important treatment is learning how to live in a way that doesn’t make your adrenals rapidly fire over and over. Now I understand just how many things I can no longer afford. For instance, mainlining sugar instead of eating meals. While I was still working I remained upright by living on Vicodin, Starbucks drinks, sugar and 16 oz bottles of coca cola.
I’m one of the original Achievers . I learned how to be teachers pet in first grade. After that achievement became my life’s guiding force. After high school I became a nurse after graduating with a 4.0 + GPA. I thrived on crisis and deadlines. To add to the mix I cultivated heartbreak and emotional drama by engaging in toxic relationships. Love and heartbreak are deviantly thrilling roller coaster rides. After being a nurse I became a graphic designer and worked in television. More deadlines, working all night, and unrelenting pressure. After 13 years of that I went back to school and earned an undergraduate in Psychology (GPA 4.12) and then a masters in Social Work (magna cum laude). Along the way I birthed a baby in a birthing center in the desert in Taos, New Mexico, without any pain medication.
push, push, push
And then my father died. And I cleaned out his house while wailing in grief wondering how it was possible that I could continue living without him. And then I started moving across the country. New Mexico to Washington. Washington to Oregon. Back to New Mexico, and finally to California where I accepted my first job as a therapist in an assembly line masquerading as a health care organization. Initially I thrived (their favorite buzzword) on the constant pressure to see more patients, to squeeze as much as possible out of yourself on a day-to-day basis, to work 10 to 12 hours a day whether paid or not. Go, go go, push push push. I tried to be more efficient even as I began to lose the ability to be so. The pain began. I switched work clinic locations to get away from a manager who had begun targeting me for my outspokenness about the system and its treatment of patients. I ended up in a clinic that was truly the underbelly of the organization, even though I had thought things couldn’t get any worse. My body was failing me. I sat with patients while in severe pain and with brain on fire migraines while trying to be attentive and compassionate. That’s when the Vicodin, Starbucks, sugar, Coca-cola cycle started. Push, push, push. I rushed around everywhere, and was always late. Usually I was late because even if I started out on time I would try to squeeze one more task into the space I had. It was only this last year I realized that this behavior was producing an adrenaline rush similar to what I received from the other stimulants I put in my body. I started feeling all the time that something really bad was going to happen at any moment, and it would be due to my burgeoning incompetence.
I tried to force my body to heal. My shoulder was the first thing to go and I would twist it in all different contortions trying to get it to go back into its former position. I was pissed at my body and I threw it around like a helpless abused dog. My scapula eventually slid down my back and became fixated, leaving the task of holding up my neck to whatever functioning muscles remained. Those muscles began to give out too, leaving me with no way to alleviate pain unless I was lying flat on my back.
I spent exhaustive hours on the internet trying to find out what was wrong with me. The HMO doctors were either dismissive or abusive, so I started seeking help from other well-respected medical institutions. There were MRIs, CAT scans, the whole nine yards. I wanted them to fix me. I was willing to do anything, just to have somebody cut my pain out and make me whole again. I had two surgeries that did not help and created another host of symptoms. I came close to suicide three times and would possibly have gone through with them if I didn’t have medical marijuana to provide relief from pain and from the mental anguish of battling daily pain. Before I was diagnosed with Lyme disease I blamed myself for my symptoms, sure that I had caused them by living in such a stressful adrenal draining kind of way.
On the first visit my Lyme Doctor said, Let’s get rid of the cure word, now. That’s a lie the medical profession has been selling for a long time now. I was not dismayed by her words. After four years of chasing a cure, I was ready for something different.
But just a couple of weeks after my diagnosis I was having a series of really bad days. Days when I would be surprised to see my reflection in the mirror because of how dead I felt inside. The weakness, the tired/ wired, the lack of ability to get anything done without having to take frequent rests, and the lack of ability to do some things at all. The lack of being able to string a cohesive thought together or accomplish a simple task like laundry. The buzzing in my brain and the sensitivity to noise that made the canned laughter on my son’s TV shows sound like jagged raw razor blades tearing through my skull. The feeling that my muscles are being torn from the bone. The unpredictable irritability and the sensation that I am breathing fire. The kind of things that cause my pre-pubescent son to say, You’re always sick, when I am begging him for some compassion.
I began developing these bright red blotchy lines on different parts of my body. I had my partner take pictures of them. I looked them up on the internet. Just one more symptom of one of Lyme’s evil step sisters, Bartonella. Even though I was already diagnosed with Lyme, I found myself surprised that I had these marks. My mind had gone back to thinking, What the hell is wrong with me?
A few days later I was talking with my partner on the phone and venting about how I was feeling and a million other things. I told her about how I’d gotten up that morning with so much pain in my right scapula that I felt like a one-sided Hunchback of Notre Dame. I took a bath and as soon as I got into it the pain switched to the left side. This is classic Lyme, by the way, the pain migrating around your body. My left hip is severely affected now too, extending all the way down to my left foot. I told her I was once again feeling like, What’s wrong with me???
She said, Do you want me to tell you what’s wrong with you?
Yes!, I said
You have Lyme’s disease, she said.
I didn’t correct her pronunciation.
About three days ago amidst the thoughts that race around inside my head there was a moment of quiet. From within the space that opened a thought appeared that felt more like a knowing. It was simple but clear.
“There’s going to be an earthquake”.
I live in Northern California and was raised in Washington state so I’ve been through earthquakes. When I was 3 I remember being in a play pen as it slid across the floor in our living room during an earthquake. Some thirty years later I was sitting in a therapy session when the ground began to roll like molten lava beneath my feet. I’ve had fearful thoughts before about the possibilities of earthquakes. I’ve tried to be mindful in my home of how I place things to avert danger if one should strike. But it’s not something I give much thought to these days, given my other concerns. I haven’t even gone so far as to anchor tall bookshelves, though I think it would be a good idea to do so. But this thought I had, it wasn’t an anxiety thought. It was a knowing.
Over the past couple of years I’ve had several experiences where I’ve suddenly known something that seemed to come from a place I don’t understand. I’ve often felt connected to people who have already passed. On many occasions I’ve felt as if my Mom, who passed away last June, occupies my body. My father was with me in presence for at least a year after his death, but it seems harder for me to find him now that eight years have passed. I’ve sat with patients who have lost loved ones and felt the spirits of their loved ones in the room. I’ve had sudden knowledge of a patient’s husband dying and then looked on the internet and found his obituary. I have a lot of people on the other side now that love and support me unconditionally and I often feel them guiding and supporting me.
So when this earthquake thought came along, I wasn’t sure what to do with it. I didn’t tell anyone because I’m really sensitive to other people’s judgment. And often if I feel something intuitively I will go around from person to person seeking validation of my internal truth. And if I don’t receive it, or perceive that I don’t receive it, I judge myself harshly as crazy, psychotic, or otherwise mentally disturbed.
I considered texting the thought to myself so I would have it as evidence if there was an earthquake. I considered writing it in my journal so that I could show it to someone. I didn’t do either of these things because I forgot. A couple of days went by, no earthquake, and the thought slipped to the background of my mind until last night when my partner woke me from a deep sleep somewhere after 3 AM.
“I think we just had an earthquake,” she said, alarmed.
“Really?” I asked, still half asleep. Then immediately I thought of my knowledge earlier in the week. “Could it really have happened?”, I asked myself before falling back asleep. When I awoke later I confirmed via my phone that the earthquake had really occurred. The confirmation of this and my thought early in the week landed with a thud in the center of my belly and has been sitting there since. It’s the same place where my diagnosis of Lyme Disease sits. They are both bits of surreal information about myself that I don’t know how to digest or what to do with.
I immediately began checking the texts I send to myself to see if maybe I had texted my premonition to myself. Nothing. I started looking through scattered random papers I always have lying around to see if I’d written it down somewhere. I wanted to be able to prove to someone that I felt this earthquake coming before it happened. But as providence would have it, There was nothing. I have no way to externally validate to another person that this really happened, not even to you.
I know it happened, and somehow that is going to have to be enough.
It started the same as every other Monday. It is Monday, isn’t it? I was in bed watching some idiotic morning show. That’s who I hang with these days. The morning show people. My mind registers that Sharon Osborne’s hair is fifty shades of fuchsia. And there was [what’s her name’s wife], you know, that rocker chick. There was someone else too but I can’t for the life of me remember who it was. I could hear the clickety-click of my son’s fingers on the keyboard as he played Minecraft in the next room. This is what we do, he and I. He chases after creepers and I chase after my thoughts.
11:00 phone consult with clinic. Breath. Held.
I already saw the results, I say to myself. I needed to hear her say it. I asked her to say it. Everyone I’ve spoken to today, including myself, said the same thing. “Well, at least now you know”. Like I said, I think that is a valid statement. It’s been a hard-won victory, and now I know.
why does it feel hollow?
I just remembered who it was. It was Queen Latifah. I’m really concerned that when little lesbians grow up they will think their career options are limited to being comedians and talk show hosts. The Queen had Scarlett Johansen on and I can’t even tell you what Scarlett said or did. That’s pretty abnormal. Why does Scarlett keep doing those weird movies? She is freaking me out. The last one I saw, “Under the Skin,” reminded me of my Lyme life. Always sinking into thick black goo and then being immobilized. And ironically, so close to the title of “Under our Skin,” the documentary about Lyme Disease. The Blockbuster sequel is coming out in August. Bring popcorn and wear long sleeves!!!
if its funny it can’t kill me
I called my Ex of 7 years give or take, my son’s other mother. “I have Lyme Disease” I said plainly, out loud, for the second or third time. She said, “Are you sure it’s not just menopause?” I wanted to laugh out loud crazy at that one. That’s the same reaction I had when I learned that the CDC’s Lyme doctors said Lyme Sufferers are looking for some way to explain the aches and pains of daily living. I wanted to laugh out loud psychotic crazy to that one.
Back beat in my head to the song by Florida “Now that you’ve found Love….” with words, “Now that you’ve got Lyme, what are you gonna do-oo-oo with it? Over and over… OCD is a cruel lover. I spent my life frantically washing my hands to avoid some unknown invader from entering my body. And now this.
I totally get it that people are totally not gonna get it. I mean, they are not gonna get it when it comes to what I’ve got. Until a short time ago I would have had the same reaction. Oh that Lyme thing. Damn. That sounds bad. Didn’t that chick on Housewives of Beverly Hills have that? I’m probably the only one who would think that. I watch the Housewives too. Even when I am thoroughly annoyed I still look at it.
Speaking of Housewives, a few months ago my partner, son and I were visiting Hollywood where her dad lives. My partner was born in Hollywood so that makes her a celebrity to me. She finds my fascination with all things Hollywood so boujwa. Ha! But she, her dad and my son and I all went and had dinner at Sur. I mean THE Sur from Vanderpump Rules. And when we walked in our table was right by the bar and I got to talk to Rob and Tom and I saw that wispy chick that was Tom’s girlfriend. I didn’t say “Hi” to her because I was afraid she would start crying and then I would probably try to counsel her or something. When I walked up to the bar and saw Tom, I blurted out, “You would make a really hot lesbian!” Damn. I just can’t seem to stop myself from saying things when I really shouldn’t. Because then I had to go up to him later and try to apologize and I was worried about what I’d said because I worry so much about what everyone is thinking about me all the time.
funny how you can never imagine where you end up
Suddenly I’m a member of a club I never wanted to belong to (no offense to our members). We’re kinda like the Leftovers in that TV show. We are here, but you don’t see us that much. We are peripheral. We aren’t smoking but we are wearing our pajamas or sweatpants. We spend a lot of time in bed. I’m discovering that we are here in alarmingly unhealthy numbers. We all have different stories but so many of our experiences are eerily similar.
I saw Ellen today too. Not her show but a commercial she was in. I’ve had a bad case of Ellen envy for the last year or so. I mean, I’m a lesbian, why can’t I have a talk show? I’m funny! I want to host the Grammys and take a selfie that goes round the world.
It’s Monday, right?
good night, vietnam