Sunday’s Song

My Dearest Maui,

I watch your lips moving
I see the words taking shape
But love’s like a language
I cannot translate
I can’t afford to be careless
And let you in
I turn my head for one minute
And lose everything

Wish I had someone whom I could lean
Cause everybody’s always counting on me
With my hands held real tight
Always ready to fight
For the few pieces of joy I have now
You have turned on a light
And I’ve lost my sight
But my heart still remembers the sound
Of a dream of a love one day found
Of a dream of a love one day found
So don’t let me down

Your past it may be rocky
But your present is clear
My present situation
Is the sum of all my fears
I take responsibility for the few things I done right
But I got so much on my plate
I’m scared to take another bite
Wish I had someone on whom I could lean
Still I don’t want no one’s charity

With my hands held real tight
Always ready to fight
For the few pieces of joy I have now
You have turned on a light
And I’ve lost my sight
But my heart still remembers the sound
Of a dream of a love one day found

Heartbreak and bullets can try
To steal any good from my life
Fathers and lovers have lied
Rivers have flowed from my eyes
Never seen love face to face
Just seen it walking away
Why would you think I would recognize
Something that’s never been mine

You have turned on a light
And I’ve lost my sight
But my heart still remembers the sound
Of a dream of a love one day found
You’re the dream of a love one day found
And the freedom from what kept me bound
And a promise of staying around
My eyes may not work for me now
But my heart sure remembers the sound
So if you saying it
Please say it loud
And don’t let me down

please?

Hello Darkness, my old friend

Currently I am  experiencing a lot of visual disturbance (and periods of intermittent blindness) in my right eye, mostly. I cannot verbalize the anxiety that comes with these “visual events”. It’s pretty daunting to be facing blindness. What I;m proud of is this:

As a means of immunosuppression, my doctor placed me on steroids prior to starting chemo that has me unable to sleep for more than 2 hours at a time. As well as this and not being able to sit still, I’ve been pacing on a hardwood floor. Im experiencing something like painsomnia.

Instead of losing myself in worry, I’m watching Planet Earth on Netflix so that this eyeball can serve out an “I got to see that”/vision loss bucket list of sorts and I feel pretty damn proud of myself for being able to just sit here and be still in this.

Sunday’s Song

“Call it a clan, call it a network, call it a tribe, call it family. Whatever you call it, whoever you are, you need one.” ~ Jane Howard

I spent last week inpatient. After changes to medications and a respite of sorts, I came home Monday. Around 5pm, my neurologist sent me a message via their medical messaging system to tell me that we were out of options and would need to seek outside opinions from Case Western University Hospital and Cleveland Clinic; and also, we’ve already done this. This means we have finally arrived at immunosuppressive therapy to turn off my immune system and turn it back on; you know, like a computer. I start with steroids today and will start chemotherapy in the coming weeks which will last 4-6 weeks and then again at 6 months. (AND possibly also brain surgery to place a shunt.) Finally, I resigned from work on Friday.

I have so many things running through my mind. They’re screaming as they lap one another. On the surface, I feel … peace? (I think that’s what they call it. *shrugs*)

THOUGHTS:

  • it’s going to be weird to have so much time on my hands but really not being able to do much ‘going out’ going forward.
  • It is strange to refer to someone as your “boyfriend” at the age of 39. He is neither a boy, nor JUST as friend. I like main man. EX: Maui is my main man.
  • The new meds are making me hella sleepy, but the steroids will make me on edge. New meds proving to be very necessary: “God’s will be done.” Because *motions around to everything going on* FUCK. (Sometimes it’s the only word to capture the true fucked-upedness of the moment.)
  • My brain needs to be numbed down to avoid burning out, but that’s all the drugs do.

The rest of it is really hard work, mindfulness, that only I can, have and will improve upon doing for myself.

                    (((sigh)))

Also, I have never felt better mentally and/or more sure of myself. I don’t know what’s going on now, or what will happen in the future, but there’s something delicious about ambiguity and I know whatever it is I can handle it. I’ve got nearly 20 years worth of blogging here to prove it, no matter what the ‘shitty-committee‘ that meets in my head likes to say. There is batshit crazy POWER in being fearless. This is next level. The proof is in the pudding, folks. I have a 100% survival rate this far after all. *smiling broadly*

HOW ITS GONNA BE:

  • I’m not going to let fear drag me anywhere, nor reel me in. It may have a moment and I hope that is all.
  • Being inpatient taught me that I’m not alone and couldn’t be even if I tried.
  • People are hurting, ya;ll. People need connection with other people. Bottom line.
  • I may spend the rest of my life not being able to work for a paycheck, but I promise I am going to be doing hard work.
  • I will be spending the rest of my life making sure I take time to sit with the broken because that’s my character and, my biggest hope, leave a legacy of love for my children. There’s worth in that. As long as I know that to be true, nothing else matters.

Diva, while you may one day fear becoming just like your mother, just remember this, Im a strong, mutha, baby girl. 

Sunday’s Song

This week while inpatient, I learned that Im still perfect even when Im fucked up because Im being myself. I was able to reach out and make deep connections despite intense personal suffering and I was told directly of it’s impact by a handful of people. You may think, ‘only a handful?’ and while you may be right, to meet people where they are and love them exactly as they are, unconditionally, I find is hard work that not all humans are capable. It seems to be my superpower.

As Rafiki said: It Is Time

Sometimes, maybe destiny just slaps you right in the face.

I’ve been up all night with painsomnia and stomach junk. I was feeling depleted enough at sunrise to doze off. Then my alarm woke me up (1hr and 23mins of sleep according to my FitBit. This little electronic, sin against fashion that I wear in a rose gold color upon my wrist.) I awake to not being able to see out of my right eye. This is a fun, new-ish symptom from pseudo tumor cerebri. That’s right, folks. It is literally, all in my head. My body and brain believe that there is a tumor in my body (my cerebral area; see also spinal cord) that isn’t there. This means that I have all the symptoms of a brain or spinal cord tumor however, I do not. It is as much fun as it sounds to be. To be clear that would be none for anyone who might have missed it. And also; excruciating abdominal pain that left me in the fetal position. Clearly, an awesome way to start the day.

Luckily, my trusty productively distracting iPhone was within reach and I was able to silence the alarm and also message Ms. Teenager Diva to get up for school to no avail. I call out for Tessa to go audibly, or physically, wake her up. I text my Momma and ask if she can transport today. Normally, Tessa would be the one I would ask for this, but yesterday her truck broke down in process and it was a WHOLE thing. Momma stepped in this morning.

Continuing the juggle flow I have going, I dial my psychiatrist, Dr. Loris, to painstakingly explain the current predicament which will require me to cancel, last minute, an appointment I requested ASAP less than a week ago. Frankly everything I just said is self-explanatory. There are way too many things being juggled and I cannot keep up. If my medical history has taught me anything it is: the one thing I can consistently expect is that my physical body will break down under tremendous mental stress. I obviously am a glutton for punishment because I decided to soothe my soul by self-talking shit to myself.

Loser. Burden. Shameful. Worthless.

Again, the smartphone saves me. I open the Instagram application to access a folder of saved affirmations. Before I can even get to it, one of my favorite authors has sent this brief message out to our souls:

There it was again. Another tickle in my brain making my hair stand on end. It rings the bell of one of my first and purest passions: writing. The signs point and illuminate this path again; and I cannot resist the luster.

I shall start with editing current website content. After that I will finish the drafts I have. There may be an influx of notifications, all apologies; and also it is time.

Onward.

Where to begin?

I keep getting the same message, in short: I need to use my voice and tell my story.

The question I pose isn’t why, but how? Where do you start? Who do you start with?

I’m looking for guidance, friends. Read. Think; and also PLEASE discuss this with me.