I have not written in at least three months or longer.  Time is elusive to me.  I can’t seem to quite grab ahold of it.  Apathy flows through my veins.  

How to live with  constant “sick” and pathological fatigue, how?  Tell me how.  I listen to books and podcaster’s telling their stories of “sick”—I don’t feel so alone in my isolation and solitude.  I do find comfort in knowing there are others out there dealing with this shit too.  At the same time, I feel compassion and sadness that others are having to live this way.  I ask my Self, what is the point? Why am I here experiencing life this way? Existential crisis? I suppose that’s what this is. The book Man’s Search for Meaning by Viktor Frankl recently “just showed up” in my small world. It has helped me figure out that searching for meaning is what I’m currently doing and have been doing for the entirety of my life, or for as long as I can remember anyway.

I suppose as a kid, I found meaning in playing with toys and learning to read and write and solve math problems. I suppose I found meaning in those things.  I remember finding meaning in nursery rhymes.  I still find rhyming soothing.  I like to recite Dr. Seuss books because the rhyming feels like stepping into a warm bubble bath.  Why?  I have no idea.  I like that nursery rhymes and Dr. Seuss books don’t really make sense.  There’s comfort in the nonsensical.  That’s life—nonsensical.

Finding meaning in something is paramount to living. Viktor endured intense suffering in the concentration camps, but it did not break him.  He found meaning in suffering.     

“There was no need to be ashamed of tears,
for tears bore witness that a man had the greatest of courage,
the courage to suffer.”
-Victor E. Frankl

I have this feeling, all of the time, that because I am constantly battling “sick” and progressive sight loss, I am no longer useful.  I spend most of my time in bed with my painful eyes closed, my leaden brain buzzing, my heart pounding and my body vibrating with a bone-tired exhaustion that’s difficult to describe.   No matter the amount of modern comforts I am awarded, my body never feels comfortable. I mean, come on!  

I lay there while my friends and family flitter around like bees coming and going—but mostly going.  Maybe I’m the Queen Bee, just lying there while all the worker bees worship me and do everything in their power to keep me safe. This is an interesting concept that just popped into my mind.  Maybe I can find meaning in seeing myself as the Queen Bee?  That makes me laugh out loud (or, “lol” if I were sending a text).  It’s funny because the idea of me seeing myself that way is absurd.  I’m the one who is supposed to be flittering around taking care of everyone else… end of story people.  

Okay, back to Viktor, I listened to his book and it blew me away.  It has changed my life.  Always, without fail, when I find myself in a place of hopelessness, a message of hope pops into my awareness.  It can truly come from anywhere. It sneaks in and does the job it was meant to do.  It’s meant to jumpstart me like a dead car battery coming back to life.   I envision the key being inserted into the ignition–it’s turned over and over and over again, making the sound of an engine that’s tired and has run out of the juice it needs to start.  But then, all of a sudden, it ignites and the engine starts purring.  I give the gas pedal a few gentle jabs and the engine roars.  Then I let it sit and idle for a bit so it can get used to running again.  This time, in my journey into the darkness, Viktor gave me that much needed jumpstart and I could feel my spirit purr to life.  I wasn’t moving yet—just sitting there idling.  I know the idling is my way of integrating the powerful information that’s just been dowloaded into my core being.  

It’s inevitable that I listen to Matt Kahn (he’s been my spiritual guide since I found myself on the crusty layer of nothingness that exists on the underside of rock bottom), his message helped me move the gear shift from Park to Drive.  And, voilà, I am sitting here writing again. 

“Loss is life’s quiet teacher,
showing us how to navigate its cycles
with a heart that’s open and unafraid.”
-Matt Kahn

I know, without a doubt, that I am being taken care of by the Universal Love that takes care of us all.  Light always “just shows up” in its many different forms. It has happened too many times in my life to deny it.  Honestly though, I don’t give a shit anymore if anyone believes me or not.  When I feel like giving up, someone or something points a laser beam of intense Light directly at me, burning a hole through the thick haze that is blocking me from remembering my Divinity.

It’s pretty funny how disgruntled I get.  I half-heartedly and grudgingly can feel the Light trying to penetrate the fog, but the whole time I’m grumbling about how everything and everyone sucks.  But then, sure as shit, I’m suddenly moving again because I listened to my inner guidance that pushed me to lean this way or that way and look here or look there.

So here I am.  I am alive.  I choose to be here.  Hmm… I’m not entirely sure that is a true statement.  It doesn’t feel authentic. However, it does feel authentic to say that I don’t know what anything is for and the Divinity living within me chooses to be here.  Divinity wants to experience life through me exactly as I am. I AM… I AM… (And, I do not like green eggs and ham.)  

Therefore, I will continue to live with so many of my physical abilities gone. I will live with this progressive sight loss, this pathological fatigue, this never-ending pain.  I will do my best to remember that I am useful in a different way than what society says is useful.

I will continue to write, because I am choosing to see it as meaningful.  According to Viktor, it takes courage to suffer and still find meaning. I can only imagine how painful it was for him to write about his life in the concentration camps. I am so grateful that he did, because his words were powerful enough to break through my wall and remind me that there is always Light and Love no matter how dark it gets.  I can find meaning in this place if I can just remember to see everything through the eyes of Love.  I will remember to love myself through the loss, the anger, the sadness and the pain.

“If… one cannot change a situation that causes his suffering,
he can still choose his attitude.”
-Viktor E. Frankl

I recently had a four day hospital stay because I developed deep vein thrombosis (blood clots) in my subclavian and axillary arteries, as well as a pulmonary embolism (blood clot) in the lower lobe of my right lung. On Christmas Eve, I started feeling this intense pressure in my neck and head when I lifted my arms or stood up from a seated position.  

As the day went on, the feeling would not go away. (As a side note, because I live with chronic illness, I just wait for shit to go away.)  I didn’t want to ruin the plans we had with the kids.  Games and dinner and presents.  I was attempting to push past it but I wasn’t acting like myself, so they all knew something was up.  I was very quiet and didn’t move around too much. I mostly sat in one chair holding my grandbaby. (Of course, I didn’t mind that one bit!)  I even passed on playing games, which is one of my most favorite things in the world to do.  Playing games with my family is a slice of heaven on Earth for me.  

As everyone was leaving, I let them know that I was going to have to go to the ER.  They all knew I had to be feeling pretty awful if I was willingly saying that out loud. I absolutely hate ER’s.  I think loathe is a better word.  I loathe the ER and lugging myself there on Christmas Eve seemed like a cruel joke.  I told my husband that it felt like someone had their hands around my neck while squeezing—like I was being “choked out.”  So, off to the ER we went.  Fuuuuck!

After I had an ultrasound and x-ray, the nurse started an IV line in each arm. Even though I hadn’t been told any results yet, I knew that two IV lines meant they found something and I was going to be in for the long haul.  I am a difficult stick because my poor veins have been being poked with needles for 38 years now.  The IV lines had to be started with a mini ultrasound machine.  Ouch!  That really hurt.

Once they confirmed the blood clots and started me on heparin (IV blood thinner), they began the process of admitting me and finding a room. I was waiting for so long that I finally had to pee. Since the heparin was hanging from a pole attached to the bed, my nurse grabbed the bag and into the bathroom we went. Peeing in front of strangers is really not my cup of tea. But, let’s face it, modesty is not a “thing” in the hospital.

Fortunately, I told the ER doc that I was experiencing extreme anxiety and I could feel a panic attack coming on.  He had the nurse give me lorazepam, which kept me calm.  I am so glad I spoke up.  In the past I would have just endured without saying a word.  I’m super proud of myself for speaking up.  I really am.  All my years of psychotherapy have helped me.  I am allowed to have needs. I still struggle with knowing that my needs are just as important as everyone else’s, but I am making progress. 

I used to say one step up and two steps back, but I don’t say that anymore.  One of my healers corrected me and said, “It’s 14 steps up and one step back.”  I like that much better.  It reminds me that I am moving forward even when I have a setback. When things like blood clots and hospital stays happen, it makes me feel like I’m falling all the way back.  But, that’s not true.  It feels true, but it’s not.  

A week prior to this blood clot fiasco, I had a tunneled catheter put in my jugular vein so I could receive plasmapheresis.  The doctors decided that the clots were caused by the tunneled catheter, so back to Interventional Radiology I went to have the tunneled catheter removed.  Let me just say, that a big old tube stuck in your jugular vein is painful… very painful.  And, now, after all I went through having it put in, they had to take it out.  The two incisions are finally starting to heal after two weeks.  It kills me how nonchalant they are about the whole thing—putting it in, taking it out.  No big deal, right? The grumpy part of me wants all doctors to have one put in so they can see just how painful it is. Of course, I don’t really want anyone to have to go through that, but sheesh!  

I had a wonderful nurse (for 12 hours) while I was in the hospital.  She told me that she had shattered most of the bones in her body from a terrible car accident.  I believe that’s why she’s so good at her job.  She understands her patient’s pain on another level.  I truly don’t wish that anyone have to experience pain on that level, but it changes a person.  Her and I connected on the same wavelength.  That’s just how it is.  

Like women who have given birth connect.  Until you have birthed a baby, you’re not in the club.  When you birth a baby, the pain is expected and you have a little miracle after—if all goes well. And, if not, that’s a whole different type of pain, and then you are in another club with women who have endured unspeakable loss.  It happened to my mom.  Then she adopted me, but that’s another story and another club.  I’ve written about it in some of my other essays.  It seems we are all in different clubs, doesn’t it?  I think that’s how we connect.  We connect with others with similar painful experiences.

I am rambling now. I can feel my brain starting to fizzle out. I’ve been writing for a couple of hours without stopping.  I guess it’s all or nothing with me.  Always has been and probably always will be.  I would like to work on being more in the middle.  I wonder if this could be considered manic.  I don’t think so.  It’s just been a long time since I’ve been well enough to sit here and write.  It’s a fucking miracle if you ask me.  

Writing is very therapeutic for me.  I do have to use a ginormous font size and a large print keyboard and have my computer speak to me, so it’s not easy.  I’m learning to stop focusing on the things I can’t do and focus on the things I can do.  I can be grateful that I live in a time in history that has computers that adjust to the specific needs of the user.  I can be grateful for all the people who make this possible.  Otherwise, I’m not sure how I would write.  I can still use pen and paper but I have to use a thick black marker and write really large and slow.  I’m right handed and my right hand is numb, so I get worn out very quickly when writing with a marker.  I can type much faster, which helps me attempt to keep up with my thoughts that seem to move at lightning speed.  Maybe I could get used to dictating, but it doesn’t feel the same to me.  It’s not as therapeutic.  There’s something about the act of typing the words that’s comforting to me.  So, let’s see, I’ve established a few things that comfort me:  Nursery rhymes, Dr. Seuss books and typing.  Again, no clue why, but whatever.  

This is stream of consciousness writing so it doesn’t have to make sense.  Back to the pulmonary embolism… my lungs still hurt and I cough when I take a deep breath.  (I feel the need to point out that I use deep breathing to get through life in this body, so this lung situation truly sucks big time.)  My lungs feel like when I catch a flu and it travels from my head to my chest.  My chest feels heavy.  The doctor told me it will eventually go away but for now, the part of my lung that had the blood clot was damaged and now my lungs are having to work hard to repair themselves.  My body was working really fucking hard before this added bullshit, so who knows how long it will take me to recover.  And, there you have it folks… one more thing. I am putting one foot in front of the other.  

I am still seeing my physical therapist twice a week and right now, I am going to go do some of the stretching exercises she wants me to do. I have to dig deep to get myself to do anything—all my sweet body wants to do is lay down and rest, but I have to keep it moving to help my lungs.  I have been going with my hubby on his morning walk. I push my wheelchair until my legs won’t go anymore, and then I sit down in it and he pushes me the rest of the way home. He doesn’t mind at all, so it’s good for both of us.  

When I’m in the wheelchair, I hold the leash for Stella our Supermutt.  She didn’t like it at first but she eventually got used to it.  She’s a very traumatized dog.  We got her from a local rescue.  She is a feral dog, which means she had never been exposed to living with humans before moving in with us.  She lived on the streets in Mexico for the first year and a half of her life.  She had a litter of puppies while living on the streets and, unbelievably, a different rescue came and took her puppies but left her behind.  When we met her, she just sat there trembling, head hanging low trying to make herself invisible.  She was nothing but skin and bones—her spirit broken. So, I very carefully sat down next to her, not doing anything but slowly breathing in and out, until she finally lifted her head and licked my cheek. That was the moment I knew she would be able to come home with us to heal. 

She is the sweetest dog you’ll ever meet, but she lives in a constant state of flight or freeze.  She doesn’t fight.  She either freezes or flees to a hiding spot where she feels safe.  We’ve had many dogs over the years, but she is our first feral dog.  We say she’s more like a cat than a dog.  Skittish.  You have to let her come to you on her own terms.  If she doesn’t warm up to you, she’ll quickly disappear by slipping behind a chair.  Nothing personal, you’re just not her type.  Feral dogs attach themselves to one person.  For Stella, that’s me.  She tolerates everyone else.  My hubby takes her for walks every day and he also feeds her most of the time, but she still doesn’t fully trust him.  We’ve had her for three years, so this is as good as it’s going to get.  I understand her, so for me it’s easy.  She’s always ready for the other shoe to drop.  I get it.