A Monkey And A Nurse

As I go through my experience in Cleveland, one that sticks out the most to me is my bathroom trips.  This is the part where I warn you that I may talk about human body functions.  I might describe them using onomatopoeia and colorful metaphors.  If this is not something that you can tolerate, abandon this post, because it is about to get very lavatory related.

Now that all the weak stomachs have gone…

So, once I was checked in, EEG was in my room hooking up my electrodes.  They all lead to a connector that has maybe thirty feet of cord, then into the actual monitor.  There must be enough lead wire to allow the patient to walk to and use the restroom. All of this makes sense.  Then they lay the whopper on me: I have to call a nurse and have someone with me any time I go to the restroom because I am a fall risk.

First, let me say that nurses DO NOT get the respect they deserve.  It did not matter which letters were after their name, every nurse took part in the restroom ritual.  See, I couldn’t just get up and go to the restroom because I was also being monitored by a Bluetooth EKG.  So, first I had to loop my brain monitor around my head, carefully avoiding the mess of wires and hair.  Then, I had to clip the EKG to what I dubbed My Beautiful Necklace and then I was able to sit up!

Nest the nurse would grab my cane and to the restroom we went.  Now, they would usually stand outside of the door and just have the cord under the door, or they would prop the door open a bit if I was having a rough day.  This was all well and good until about the second night.  I was doing sleep deprivation, so I was drinking a lot of coffee and a lot of water, but I could feel my tummy rumble and couldn’t go to the bathroom.  So, they gave me some stool softener, and the next day I could have died.  I had only really been eating protein and veggies with no fat, and drinking a lot of water.

Finally, I felt like I was ready to go, so I picked up the nurse call button and confidently asked for someone to take me to the restroom.  I went through my little routine before the nurse arrived and was ready when he got there, and we walked over to the restroom.  Then, the largest gust of foul air loudly exited my body for what felt like minutes and a tiny poop.  Just when I thought that this wonderful experience had ended, the gas just kept coming.  Pockets of air, seemingly hidden for centuries, found their way out of my body and made me question the wonder vs the grossness of the human body.  After a few more ego shattering noises, I cleaned up, washed my hands, and when I opened the door it was like he died a little bit inside.  I was there for seven days.

This was life.

Without moving much, the digestive system becomes very sluggish and does not tend to operate normally.  Even though I was eating smaller amounts of food that was healthy and drinking plenty of water, the body requires motion to assist the process, otherwise digestion isn’t really an issue if you aren’t using up calories.

When I discussed this with one of my nurses she told me that this was a common occurrence on that floor because everyone is just laying down or sitting down.  We can take walks, but only for a short period of time before EEG is looking for their patient on the loose.   Luckily there are cameras everywhere so even when outside of my room I was able to be monitored in case I had a seizure outside of my room.

In fact, the only place they cannot record you is in the bathroom.  I eventually got used to my messed up stomach and laughed at my hideous gas because what else could I do?  I have no shame and very little decorum, and it is stressful to poop while someone is outside of the door.  Actually listening to make sure I am not falling off of the toilet, so acutely aware of every noise and sound I make from the tinkles to the tank blasts.

I want to tell you that it was better by the time I got home, but that was the beginning of a process to get back to normal.  It took a few days of stool softener to get anything besides air to come out and then, it was a nightmare.  The kind that made me question the quality of our plumbing and if it can handle what my bowels are about to impose upon it.  Two or three days of that and I am now pretty much back to normal.

Why am I sharing one of my horror stories?  People go through this much more often than one might think, but no one talks about how laying in the hospital for a week killed their digestive system.  It is another misery to be lived in private away from the eyes and ears of those who might rather not know.  It is one of those things you can’t really plan for beyond having veggies and whatever is needed to free up the colon.

My mother was with me as I went through this unpleasant journey.  I think her favorite part was me politely asking someone to come take me to the restroom.  I must have asked thirty times a day.  Often times I could not go.  That was frustrating.  The whole thing was just one of those learning experiences that I hope I never have to go through again, but if I do, I know how to handle it.

For those out there who feel like you are going through this alone, at the very least know that my heart is with you.  It is a lonely place to be when the body stops functioning as desired and when doing something that has always comes naturally becomes painful and a burden.  No amount of talent or intelligence can overcome the body in times of distress.  However, this experience is not yours alone.  It is not shameful nor does it say anything about who you are, only that you are human and your body does human things.  I eventually just started laughing through the process, I can’t bear to cry on the toilet.  Whatever gets you through.  For some, this is not a hospital thing, this is life’s everyday struggle.  I can’t speak on this as a long term issue, but I can see how much impact this can have on living a “normal” life.

It has been my hope that in the future we will spend more researching rare and lesser understood illnesses and conditions because we can’t allow people to suffer needlessly.  I can handle a week of bubblegut in the hospital, but I can’t imagine that being my permanent state.  So, advocate for yourself, for others, and for nurses who have to put up with some awful…

Inky Monkey

I love the arts.  I am particularly fond of music (Baroque being my favorite period) but I enjoy the grace and beauty of ballet, literature from all over the world, and of course I admire the curves of a statue or the brush strokes of a master painter.  However, I am aware of a few things:

• There are other forms of artistic expression and art evolves
• I only have a small bit of artistic ability outside of music and sculpting
• It is OK to be bad at art and still enjoy trying

So, I decided to participate in Inktober, which is where you draw something everyday for the whole month of October.  If you click on the link above you can visit that site and check out the rules and past prompts.

Anywho, my hands seem to be weak and so the prospect of drawing something everyday is very daunting.  However, I am waiting to hear test results that could alter my life course so I am challenging myself not only in dance (my feet are also weak) but I want to push my hands to their limits.  I have tried to keep each design easy, things I think I can draw fairly easily, and in most cases I do not color in the picture.  I usually will use dots as color markers because it hurts to hold and press continually to color.  The dots use my wrist, so my fingers aren’t taking as much stress but they are still used to do the initial sketch and the ink lining.

Having a chronic illness or chronic pain or any disability can be discouraging when life changes drastically.  For me, it has been shifting and changing for three years, so even though my family and home are stable, my body and health are not.  It gets very easy to quit or give up on things because I physically just can’t do it like I used to or my neuro team says, “NO!!!”.   I decided to not let any of this stop me from finding ways to express myself and get my energy out in a peaceful way.

I joined dance because my body feels foreign and we need to be back in sync. I decided to do Inktober because I wanted to release creative energy.  What really lured me in was the challenge to do something that I enjoy but am not really good at.  I can make a drawing and people can know what it is, but it usually would not be considered “art” by anyone with reasonable taste.

We are four days in and I have given every day 100% effort to make something that I didn’t think I could make.  Today, I think my most difficult challenge was perspective.  I really didn’t put that much thought into distance and size so I feel like everything looks ‘off’ but I am still happy with my work.  I am happy with myself for trying and being able to figure out what I think could have been better.  I hopefully will adjust for the future.

My fellow humans, perspective is often what we have to work on so that we understand what is going on and how to best deal with it.  It is easy for me to lay around everyday with this stupid headache and watch cartoons.  Changing perspective has allowed me to see that I have the opportunity to recreate myself as soon as all of my medical issues are under control.  I just have to keep trying new things.  For now they help me not think about test results, in the future they might be what I need to make an impact on the world.

I encourage you to try new things or do things you aren’t good at for a little while.  It is amazing what your brain can do when you give it freedom to express itself in new ways.  My hope is that everyone can find activities that suit their needs, physical, emotional, and mental.

If you are a part of someone’s support group make sure you are a cheerleader.  Be supportive even when you are fairly sure the person has lost it.  Do the same activity, or at least give feedback on the person’s progression.  My daughter is an artist, and she critiques my drawings with the knowledge that this isn’t my strong suit.  Shoot, I am not a writer, my sister is an author, and I write this blog like I know what’s up!  I realize I probably change persons and tenses and that I easily switch from proper grammar to words I make up a little too often, but she gives me the benefit of knowing that I sing.  I write as a fun thing, but nothing serious.

Your support means so much to the person you love because they have probably seen the misery of someone who does not have a support system.  It is heartbreaking to think of what life would be like in the worst of times without you being there.  We love ya’ll.

That’s it.  I have to go get some rest because tomorrow I have to draw something else and I have to get that beauty rest to make beautiful things!

Monkey Countdown: T minus 29 days

I swear I skipped a day, but this train is rolling and we don’t go backward.  Maybe that pulls me one day closer!  Today was quite a day for me.  It wouldn’t have been different from any other Thursday I suppose except our weather around here has gotten out of hand.  It’s cold then hot then rainy then warm then downpour.  I knew when I woke up that I would have quite a day to conquer even though I am not doing much.

I dropped my daughter off at school.  I tend to slouch to the side in vehicles.  It use to be to the right, recently, it seems more to the left. Then I went to go pick up my sister for a doctor appointment.  At a light, I tried to adjust my hips and slammed my head into the window when I tried to lift up on my right arm but pushed myself over instead.  The people in the car looked at me.  I just looked ahead.  You don’t recover from that.

By the time I made it to my sister’s house, maybe in ten or fifteen minutes, my right hand was stiff from holding the steering wheel.  A dull pain had creeped up to my shoulder socket and I was going to have to use my left hand (which honestly, I just don’t trust as much) to drive for a while.  Thankfully, her doctor is close to her house so I had time to rest after she went in.  I stayed in the truck because I needed to go over my speech therapy words and it allowed me to adjust the seat back and relax a bit.

Then, I dropped her back off, went to pick up my daughter, waited a bit for her (I was FINALLY early for once) and then grabbed lunch and came home.  It was so nice to be home. but my right palm felt warm.  Almost buzzy.  Concerning.  This morning when I got dressed my middle finger went numb on my other hand.  I try not to think about these things because what can I do about them?  I have to wait for this appointment and hope that my body is misbehaving when we go so they can see for themselves what I mean.

Like, what would I do if I lost the efficient use of my hands?  I create.  I put together.  I build.  These thoughts swirl around when my hands hurt.  So, I grabbed my piping hot Beyond burger with Cheddar Cheese on a Croissant and took a bite.  I don’t like to think of it as trying to replace the flavor of a hamburger.  Instead, it has its own flavor, like chocolate and lemon cake.  They don’t compete, they are what they are and that is ok!  I can’t even begin to imagine what these are made with.  All with the croissant that isn’t sweet and fresh spinach.  It’s enough to make anyone forget about their worries.

Then, they serve it with these sea salt kettle chips that are amazing.  They pair well and go excellent with a fine ginger ale or root beer.  I can’t get enough of this meal.  Something about it is very gratifying.

In the end, I don’t know if we can change what is happening to my hands.  It is one of the myriad health issues I deal with that kinda make things miserable.  I have spent more time feeling things.  Holding them, noting their texture, just running my hand across some soft fabric or smooth granite.  I have no idea what the future holds, but I want to make sure that I appreciate what I have right now.  They aren’t perfect, but they write and they draw, and they hold my coffee.  They are miracles in their own right and I will celebrate them forever, no matter what happens because I never realized how special it is to have working, skilled hands.

The Monkey Bush

So, I would hate to give you the impression that everyday with Chiari Malformation is a seething pool of pain drawing your down into its fiery depths until you finally succumb to the misery and agony of your new life. This is TOTALLY not true for everyone and plenty of people live normal or almost normal, productive lives after learning how to cope with an event that changed their lives.

In my own small little world, tiny but awesome things happen all of the time.  I get many little gifts that show me how much people care, I do have a lunch habit that is terrible, especially since I don’t work.  I enjoy a range of hot drinks from coffee to tea to cocoa to cider.  I even spend some time drawing funny comics at Chiari Conversations

It is unfortunate that these pleasures in my life get eclipsed my the days and weeks of pain that permeate my head and body and leave me begging for death.  Those glitter gel pens are awesome and I and so thrilled my family got them for me.  I care nothing about them in the throes of a deafening headache.  I hate that something has enough power over me to no steal my joy, but to nullify it. To make it so insignificant because blue ceases to be a concept my brain can process through pain.  Art ceases to be an action I can undertake when the weight of the unseen hand is pressing my head onto my neck.

Yet, there are moments of clarity, usually music is what fits the mood and I sing.  At times I draw.  More and more I find myself writing to express myself.  I find that it is the most accurate way to portray the real nuance of my feelings without misinterpretation.  I can explain myself very well.  When these moments come to me, I try to write as much as my hands will allow me to.

Today, it is a chilly 45 degrees here in Las Vegas.  Look, these cassia bushes have no idea it is winter:

Ignorant cassia bushes

This ignorant little bush (and its 7 closest friends) have spent the ENTIRE WINTER blooming.  It is just shining in the creepy faces of all our other naked bushes.  This one has no shame.  Not only did it bloom, it had the audacity to grow after autumn!  I want to be as oblivious to all the negative things around me as Cassia Ignoranta is.  Has not been fertilized in a year, watering system was shut off, shorter afternoons, less bees, and yet Cassy don’t care.  She and her friends are making ALL of our other plants look sick.

That sage in the upper left, pretty much dormant.  There are two dwarf bottlebrush plants behind it that look frightful.  They look like the froze to death.  They cut off their supplies of nutrients in expectation of winter.  Saving valuable nutrition to build a stronger root system in the winter.  Our eucalyptus tree is just shedding whole branches.

Yet here stands Cassia Ignoranta in the face of the wind, not shivering, but laughing and playing.  Daring you to steal its joy. That’s what I want.  I am tired of hunkering down in my life waiting for the next hard time to come and wait it out.  I want to be able to throw that caution to the wind and laugh in its face.  I want to feel free in the sunshine to dance and bloom.

I just don’t know how to do it yet.  For now, I have my moments when I glow or when I shine, but they are short-lived and not something you can really gather into a permanent state.  At least not right now.

The brightest spot is my family.  When nobody else understands, my family is the wall that stands between me and the world and they entertain me and keep my spirits up.  I won’t lie, a lot of this journey in in the valley, but even the sun shines in the valley at noon.

I hope you find and treasure your bright spots.  During the pain, they may only seem like distant twinkles, but lets work on remembering what those bright spots are and what they represent to us.  They are the sun on our faces, the glitter gel pens in our greedy hands, they are the laughs and good times we put away in our hearts for a time such as this.