I do not have to be good or walk on my knees

Image by MandieLaRue

Wild Geese–by Mary Oliver

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting
over and over announcing your place
in the family of things.

I was at work on Friday, feeling good that I was able to be present with my schizophrenic client, when I realized I’d spaced my oldest kid’s orthodontist. AGAIN. My thoughts immediately went into a frenzy of shame. I knew it was absurd to give credence to them but I felt myself spiraling down, leaving the world of moments ago in which I was coping quite well. Suddenly I was no longer ‘good’.

Ah, Depression, how you can so quickly and adeptly shatter everything. And this is the world I dwell in right now. On Tuesday I spent an hour sobbing while making lasagna. I had to get in a cold shower in order to pull myself together before picking my boys up from school.
I want desperately to believe Mary Oliver’s words. I want to believe my body is a soft animal that can love what it loves. I tell you of my despair. But I can’t bear to hear about yours because it will break my heart wide open. I tell myself I don’t have to be good. Instead I believe I do have to walk one hundred miles on my knees. And I think that once I’ve walked those hundred miles I’ll still be worthless. I want to believe I’m a wild goose. I certainly feel like a wild thing. I want to be the Handless Maiden who can solemnly walk through the wilderness relying on some spirit to guide me. I want to believe my tears will keep the devil away but after a lifetime of battling depression I know better.
Score this week:
Depression 1
Me                0
I’m alive, though. That must count for something.

Is My King Still Looking for Me?

“I feel worn out,” my husband said when I asked him how he feels about our relationship right now.

It’s probably not fair to compare him to the fairy tale king who goes searching for his handless queen for 7 years, all the while neither eating or drinking. And yet I find myself wondering, would he be telling me he feels worn out if I had something other than chronic pain and occasional bouts of depression? Would it be different if I had serious diabetes or were disabled because of a car accident?

No major disaster any one can see has caused my metaphorical hands to be cut off. And yet, here I sit, broken. My therapist always challenged this but it’s a belief that still holds energy in my psyche. Broken and probably to the extent that nothing will ever completely put me back together so I’m sufficiently functional.

The truth is, I’m worn out too. Tired of fighting to find meaning in life. Tired of enduring pain almost every day. Tired of working so hard to leave my past behind only to find it’s just around the bend. Tired of watching as the damage done to me somehow seeps through my DNA into the brain chemistry of my oldest child. Tired of not being able to show up as a partner to the very kind and gentle man I married.

And when this kind and gentle man asked me:

What do you want and need from me? Do you even know?

I had no answer. I don’t think it’s fair to ask him to wait indefinitely for me to patch myself back together. Could he take me as I am? Maybe that’s what I want. But that might take more patience and acceptance than I could expect from anyone.

Part of me wanted to respond with:

Maybe we should just call it quits now. I’ll probably spend the rest of my life trying to mend my broken self and I might die before I’m finished with that work.

And maybe this is just the depression talking. I won’t know until I get my brain chemistry in order.

A Little Progress Towards the Inn

Last week I did an intake at the local public mental health clinic. I’m fortunate to be in Boulder where the public clinic is more like a true wellness center than the run-down places in some cities where you have to show up first thing in the morning, wait in a dirty room on broken chairs and hope you get one of the 10 appointments available that day.

Perspective. I’m complaining about having to wait 8 weeks to see a psychiatrist but I’m going to see a psychiatrist I already know, someone I trust to listen and understand me. And I’m scheduled to see a therapist handpicked by my previous therapist whom I trust immensely. In the meantime, there’s a long list of support groups I could just show up for but I don’t want to wear myself out with too many different commitments. And, of course, the support group for people with chronic pain occurs at the same time my kids get out of school.

So I can see the Inn up ahead and it’s allowed me to settle a bit; my depression has gone from frantic crying to the numb walk of a drunkard. Everything’s a little bit foggy but that’s better than the crazy of last week.

I was going to write about all the uncertainty in my life right now but I find myself too tired to organize my thoughts. Suffice to say in the span of one week I got news that my first husband was in a coma after suffering several small strokes (he’s awake now and on the long road to recovery), one of my oldest friends had a psychotic break and ended up in a psychiatric facility, and my closest friend in Boulder has discovered a breast lump which the doctor says could very likely be cancerous. It’s no wonder I’m tired. I’ll just wander off the road and find a soft spot to cozy up in and do some coloring and watch something soothing, like North & South. I like period dramas with the gorgeous costumes but I also require something that addresses social justice.

The Handless Maiden (Tries to) Goes to an Inn

Soooooo…today I called the doctor I’d pinned some hopes on. A fibro friend recommended him and I put off seeing him because he’s an hour away by bus. When I called and asked:

Does Dr. Daarud take Medicare?

the receptionist responded with:

Yes, he does, but he’s not accepting new patients at this time.

I held back tears and asked:

Does he have a waiting list?

The receptionist said “no” and I bravely said:

Well, I’ll just wait and call back in a couple of months. Thanks. Have a nice day.

Then I broke down into tears because this is the guy who listens, the guy who’s been treating fibro for over 15 years and was inspired to start treating it when his brother was diagnosed with the disease. I have proof he helps people with fibro. But I have no access to him right now.

The sobbing led to a call to the local Mental Health Center, the only place I can see a psychiatrist with Medicare unless I check myself into a hospital. I briefly considered going to the nearest emergency room when they played that part of the  message on their answering message. The one that goes:

If this is a psychiatric emergency, please hang up and go to your nearest emergency room or call 911.

The one I always wish they’d hurry through because I know the drill (I AM a psychotherapist) and because it’s not usually a psychiatric emergency. I didn’t feel like the Handless Maiden in that moment. I didn’t want to patiently wait around for some spirit in white to come help be forge the moat and direct trees to offer me branches with ripe fruit. I wanted someone to help me RIGHT FUCKING NOW!

I opted to stay on the line and go through the admissions process. Maybe they have ripe fruit. The line was busy so I left a message and was assured I would receive a call back within 24 hours. 24 hours?! Is it just me who waits till they’re in crisis? Do most people actually call the Mental Health Center before they reach a crisis state? When I hung up I called back to speak to the operator and ask about the crisis walk-in center. What goes on there? I was told:

It’s a center (hard to get to by bus) which is open 24 hours a day where therapists are available to talk with people in crisis. No medication is prescribed at this facility.

OK. Moving on. That’s not the Inn I’m looking for and the admissions people are going to be at least a day getting back to me and when I finally get approved for services, the wait time to see a psychiatrist is 6-8 weeks. So I text my old therapist (who agreed to see me on a sliding scale and whom I haven’t spoken to in a year).

Having a crisis and MHP is backed up. Any chance you could see me sometime soon?

I received a prompt response:

Sure. How about I call you around 3?

OK. Finally an Inn in sight. In the meantime, I’ll just call around and see if I can choose a primary physician who might also be willing to prescribe me antidepressants until I can get in to see the folks at MHP. I go to my medical group’s website to choose a doctor, pick a friendly looking older guy and call to make an appointment. This is sure to go well. Usually, I can get an appointment within a few days. Explaining the whole medication sensitivity thing might be a little complicated but I’ve done it before. I’m breathing, I’m feeling hopeful and then I realize the call center is on a loop. I press one to schedule an appointment and I’m routed back to the call center’s opening message. Over and over again. I must have walked around that Inn 5 times before I realized there’s no working door today.

Oh well, at least my therapist’s calling around 3.

I walked and walked and when 3 came there was no Inn. No call from my therapist. At 4, same thing.

I’m tired of walking. I’m sleeping under the stars tonight.

Elavil & Spiders Under My Scalp

Quick note because I think I was slightly traumatized by the elavil prescribed by my rheumatologist. Maybe if I dump it here I can let it go.

A few weeks ago my new rheumatologist prescribed elavil for my fibromyalgia. Within a few days I noticed a reduction in pain but as the pain receded I began to feel depressed and have suicidal ideations. I let my doctor know and she was concerned enough to suggest that I either find a psychiatrist to monitor the situation or start titrating off the medication.

I persevered because I desperately wanted the medication to work but I couldn’t find a psychiatrist who took my insurance. And then came the spiders. It was a Friday and I woke with a strange sensation on my head, like an electrical charge moving across my scalp. Unfortunately the feeling progressed and soon I started feeling like spiders were crawling between my scalp and skull every five to ten minutes. I’d have a brief respite and then they’d start up again.

The moment came when I was certain I’d have to quit the medication. I went to pick up my younger kids from school and the sensation was making me so anxious that I couldn’t walk onto the playground to collect them from their classes. I started titrating off that night and felt ‘normal’ within a few days.

No more crawlies.

A Ripe Fruit Presents Itself

Yesterday, as I was practicing metta, I had a sudden realization. A ripe fruit offered itself to me in the form of wisdom. The words I say when I practice metta are as follows:

May I be happy & peaceful

May I be healthy & strong

May I be safe from inner & outer harm

May I find ease of existence

When I practice while wandering the wild woods of depression my mind responds to these phrases with bitterness. It looks something like this:

Me: May I be happy & peaceful

My mind: As if that’s possible

Me: May I be healthy & strong

My mind: My body is weak & broken & betrays me; healthy & strong is a joke, unachievable

Me: May I be safe from inner & outer harm

My mind: I’m female bodied, already been terribly harmed, & I don’t trust the government

Me: May I find ease of existence

My mind: How the fuck am I supposed to find ease?!

Yesterday during my practice I found myself being curious about the words and the answers to the questions my mind poses about being healthy and strong because right now those seem the most unlikely to happen. Maybe, just maybe, the expectation I have when I say those words is the problem. I imagine myself suddenly able to take on all my daily tasks, able to become engaged in activism again on a regular basis, able to pick up my 5 year old when he falls and hurts himself, able to get through my days and nights without the fear and confusion that comes with the seizures.

Maybe, just maybe, I should try this:

May I be as healthy & strong as I am able to be

I have not had much hope lately that my conditions will improve but it seems reasonable to allow for that possibility. Perhaps the words I use during my metta practice could be imbued with more love and compassion. That is, after all, what the practice is supposed to be about. That might mean allowing for possibilities and then striving to someday be able to accept myself just as I am in that moment.

At this very moment my mind is telling me this whole thing is bullshit. But the fruit was ripe and it is nourishing some aspect of myself that is sighing a much needed sigh. I’m still wandering, still feel like crying, AND I have received some much needed food for the journey.


The Handless Maiden Goes on a Walkabout

“A wind has blown the rain away and blown the sky away and all the leaves away — and the trees stand …” e.e. cummings

When the pain gets bad and the seizures set in I get depressed. I leave. I still somehow manage to do the laundry, feed the kids, do the taxes, get to appointments, etc. but I’m like a ghost. I appear to be doing these tasks but I’m not really here. And when I leave I usually go without warning to my children and husband. The children understand somehow, accept that mom has become a ghost again. They may ask about the pain or complain that I’m not present but they accept it. I’m not so sure what my husband sees or accepts.

Depression is what most makes me like a ghost. I drift about the house and I’m mostly silent but inside I’m wailing and moaning and sometimes when I’m alone I allow myself to cry all the tears I cannot cry when others are around. The crying comes on out of nowhere and it hits me like a tsumani. It is rage for being handless, being unable to touch the world I’ve created for myself. It is deep sadness and longing for being whole and well and not broken. It is emptiness and overwhelming fullness all at once. Chairs get toppled over. The palms of my hands smack the counter or the floor where I’ve fallen into a puddle of grief. The dog comes shyly to check on me. She feels my pain and the expression frightens her. It frightens me too.

Once I’m in the space it’s so hard to find my way back. The pain may recede and the seizures may stop but I’m still wandering in the wilderness of my feelings, still unable to reach out for the comfort I know my husband will wrap me in. My thoughts become enemies. My children are abandoned. My husband will leave me or have an affair. My oldest child with chronic pain and depression will start cutting again and it will be my fault because I am not able to put my hands on her. My hands are gone. They are still in the spirit world.

This time I left so abruptly and completely that my husband and I have not had a conversation beyond what is necessary in over 6 weeks. I drove myself here by finally leaving my horrible insurance company and believing new doctors would listen and respect and treat what ails me. When the new rheumatologist prescribed a medication and it sent me into severe suicidal ideation, she told me there was nothing else she could prescribe for me. The old song of “exercise and get good sleep” was sung again by this new doctor and I was left abandoned in the wilderness of pain. The following week I saw my new neurologist and she told me the pain medication I had recently been prescribed was too dangerous for me AND my epilepsy was too complicated for her to treat. She referred me to an epileptologist 2 hours away and told me I should try new meds, get the VNS, consider surgery. All this after 20 minutes and a clear message from me that I was done trying new things because everything new I’d tried in the last 10 years had ended in hepatitis, more seizures, gallstones, kidney stones and more pain.

So I’m on walkabout and I don’t know when I’ll find that Inn in the woods. I want my hands back. I want to go home.

Why I’m Starting a Vent Blog

Crying keeps the Devil away.

My oldest kid, a gender queer teenager who is wise beyond their years, keeps telling me about their (they use ‘they, them, their’ pronouns because they identify as non-binary) and their friends’ vent blogs. From what I can tell, these blogs are anonymously posted and give these kids a safe space in which to express thoughts and feelings which they feel they can’t express elsewhere.

For a while I thought this was a cute little thing these teens were doing and while I acknowledged the wisdom of it, I didn’t think about the value such a space might have for me. And yet, as I’ve struggled with a new bout of depression brought on by an intense fibromyalgia flare and lots of complex seizures, I’ve retreated from friends and even my husband. I haven’t felt like I can share what’s happening in my heart, how scary my thoughts have been or how much pain my body is really in. I busy myself with tending to my household, caring for my children and doing what I can as an activist. My hands are busy but I feel that they are somehow ghost hands. I long to touch the world with intention and joy but I don’t feel like I’m part of the world. My pain and seizures have been keeping me separate.

I realized that I need an anonymous space to wail, bemoan, weep and plead. Maybe by doing so here I will eventually find my way back to the world of the living and I will be able to share with those closest to me. Until then, this is my inn in the forest where I will once again grow new hands.