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 Comfort

People seem to have a problem with understanding a few things and I would LOVE to set the record straight (as I see it, so, slightly skewed, I suppose).

If I come to you with a problem, NO MATTER WHAT THE PROBLEM IS, I am probably coming to you because I trust you, I feel safe around you, and I feel you are a soft place to land.  I have discovered over the past three years who most of these people are, but every so often one surprises me and I land in a hard, rocky place with no comfort.  If I have dared to ask you for advice or insight, it is because you have shown yourself to be a wise person.

I don’t need for you to shame me because I take prescribed meds for any purpose or because I am not following a regimen that your doctor has you on for something similar, but different.  I don’t need you to tell me that I am probably blowing it out of proportion or that I shouldn’t be concerned because I don’t really know.  Surely I don’t need you to tell me to get a job when you know NOTHIN’ JON SNOW!  It never even dawned on you that my doctors don’t think that is a healthy choice.  You never considered that my neurologist knows more about my brain than either of us do! You never considered that I was coming to you because I needed you to tell me that it was ok to be scared but that I was surrounded by people who love me and even if my world comes crashing down, you will still be there to comfort me.

I wish I had realized all of this before I began sharing my life with my associates, but I thought we were here to love each other and be understanding of the hearts of one another.  Of course there are times when we have to be serious and stern and put a foot down, but not when someone is pouring out their heart.  This is a time to listen to what someone is truly saying to you.  Often we just need someone to tell us that it is normal to feel sad/weird/upset/angry/resentful in this situation BUT they can leave off why it isn’t right and why you should do better.  Give each person time to come to terms with their feelings and then they are better able to listen to HOW to change the behaviour or outcome.

For more than three years I have had to deal with people telling me how to fix a problem that we are just now beginning to understand.  There is more than one problem, but one likely inspired the other to come to fruition since there is a genetic link.  I have felt like I have lost great chunks of my life (let me remind you that I get his with “oh, I lose my keys too!” and it is SO degrading at this point) and I have had this all but confirmed by one of my neurologists.  After testing, we will be sure, but when you see it with your own eyes, it is hard to deny the truth of the matter.

The best part? I have to put on my smile and keep going and at this point suffer in silence because almost nobody actually hears what I am saying.  As of two days ago I was medically banned from driving, swimming, taking a shower in the house alone, being by myself, going to the gym, dancing, and anything that could cause harm to myself or others, until further notice.  I refuse to tell people why.  Why does it matter now?  Is it because now you might get a glimpse of what is going on so you can actually believe what I have been saying?

Ya’ll detect some resentment here?

This is the part I have to work on.  I can’t live resenting people and their callous words because I know that in reality, they are probably doing the best they can and don’t know how to be any better.  Some might even say I am in a position to enlighten people and bring them to a place of understanding hidden illness and how it affects the different facets of a person but I don’t really know how to do that yet.  Sometimes I try to explain and I get a mansplaining I won’t soon forget (but luckily I usually do).  I am trying to make sure I use these experiences for myself, to thicken my skin and toughen my heart.  I cannot let the words of others be the downfall of my spirit.

When someone comes to you for reassurance that the world isn’t caving in on them, don’t use your logic, use your heart.  Assure them that you understand how upset they are and love on them.  I am NOT saying agree with them or help perpetuate something that is dangerous or unhealthy, just acknowledge their feelings and listen to them.  Don’t tell them how this could have been avoided, or how it was when you were in a similar, but different, situation. JUST LISTEN and reassure them that is it ok to be upset but not to take out your feeling on others.

For anyone who can’t seem to put together what I am saying, I will put it in steps for you.  When your friend comes to you in emotional distress:

1. Ask them if you can get them anything (like water).
2. Ask them what is going on, but ONLY if you are willing to actually listen.
3. LISTEN actively.  Make eye contact, nod in understanding, and if there is something you don’t understand, ask for clarification if it is important to the situation.
4. Confirm that you heard what the person is saying and validate that they have feelings concerning whatever it is they came to you about. (This DOES NOT mean you agree with the situation, only that they have feelings about it.)
5. Ask if there is anything you can do to help friend get through this situation.  Follow through if they ask for something.
6. Check on friend in a day or so and see how they are feeling about the situation and maybe this is the time to talk about solutions if they are ready.

I hope this helps us all become better listeners and friend because let’s face it, we aren’t running out of problems anytime soon!

*Note: if you see something you have said or done on this list and feel convicted about it, don’t worry, all of these situations have happened multiple times.  Individually, you were only one stone on my chest.  Don’t feel bad; do better.

Out Of Monkey Experience

If there is one thing about my experiences over the past two years or so that sticks out at me, it is the overwhelming feeling of being disconnected from my body.  I have always been in tune with my body.  I found out I was pregnant at 10 days because “something wasn’t right” with my body.  I remember the nurse and the OB being surprised that I could notice such subtil changes in my body.

I have always been active and of course that meant a lot of listening to what my body had to say.  I know, or knew, my body.

It is no longer that way.

So much pain has entered and made a home of my body that I have mentally distanced myself from my physical person.  This isn’t the body I know.  I feel like I am in a stranger’s body; as if my own was stolen from me and I woke up to a Franken-body that knows no end of personal humiliation.

The falling is embarrassing as well as it always causes some kind of damage from a skinned knee to a bruised pelvis.  The headaches are debilitating.  The nausea is a constant, annoying companion.  This is the tip of the iceberg because if we swim deeper we see the much more devastating actions my body commits that leave me hating this piece of flesh that wraps me up.

Imagine if you will living your life and all of the sudden you have to go.  Like your whole abdomen bloated with the breath of Satan and the foul demons must be freed.  You are completely normal feeling with no urges, then, BAM!  Impending doom is happening in your colon.  How do you work your life around that type of issue?  My Gastro just felt sorry for me but said that urgency is a neurological problem that he is not equipped to handle.

Of course, it isn’t always THAT bad.  You might just get bladder spasms.  They are like having a broken sprinkler system in your body.  You HAVE to go right now!  Just kidding.  BATHROOM!  NOW!  Just kidding.  I WASN’T KIDDING!  It’s serious now!  Just kidding!  repeat this every 15-45 minutes for 2-20 days at a time.  At home.  At church.  At work.  At lunch.  At night, I sometimes take my CPAP mask off 8 times to go to the restroom.  I get little rest those nights.

Then there is the possibility of your hands losing their strength and fine motor control.  Writing becomes such a burden, however, you will have to write all of the time because you have to fill out medical forms and such.  Work with your hands doing fine work?  Once you get into the groove of doing what you love you will feel the burning pain seeping from our fingertips all the way to your wrists.  Your fingers will slowly stop responding to commands and will cramp into a half closed position until you allow them the time to recover.

It could be something as simple as going out for a walk and the skin and muscle on your legs feels prickly and tingly.  Every time.  Remember though, you are supposed to walk for a certain amount of time each day until the other therapies start so that your body is active.  Maybe you tough it out.  Maybe you divide the walk into two shorter walks so it isn’t so bad.  Of course, it doesn’t need to be said that all of the muscles and tendons in the top of your feet will be killing you and trying to cramp up.

Let us not forget that you could have tinnitus which is fancy speak for “ringing in the ears’ which sounds WAY more fun than it is.  Like, when someone is talking to you, but they aren’t speaking over the never-ending buzzer in your head, so you have to continually ask them what they are saying.  The worst is when you have the opportunity for peace and quiet but your head is so loud that you can’t enjoy such a simple pleasure.

My “favorite” is taking a shower and being bombarded by tiny spikes of pain as I try to clean myself and not hurt myself in the process.  It is most painful in the winter because it is like being attacked by scalding hot water.  Baths however carry their own risks, mostly falling.

These are all things I deal with in my body every day for over two years.  This is but a small portion of what I and millions of other people go through every day.  We leave the house, some of us looking “normal” and some of us with visible aids and we walk into a world that has NO IDEA what happens behind closed doors.  They don’t see what we regularly overcome in order to be able to interact with the world outside of our homes.

For me, going from an able-bodied mom, athlete, student, minister, singer, and volunteer, to being crushed by the gravity of my brain injury has caused a dissonance I have not been able to retune.  This is not my body, this is a nightmare that I am stuck in.  It’s not where I have spent my life.  I feel like my mansion has been replaced with a hovel.  It feels like I am at odds with my body and I don’t want to be this way any more.

I imagine I am not the only person who feels like their body was replaced by a much cheaper version.  So, I am very invested in getting my body back.  Not necessarily my lovely 19 year-old body, but the strong body that I felt I could depend on.  So, I am starting at the bottom.  I walk for about 30 minutes a day, broken up into two sessions unless I feel well enough to walk more.   I take a personal gyrotonics class that helps to stretch my body and we do core strengthening.

I begin music therapy this week and that is supposed to help with relaxation techniques and with fine motor movement playing piano again.  Soon I will begin occupational therapy, physical therapy, meditation therapy, and hopefully a neuro-rehabilitation program.  I will also begin dancing with a troupe after my therapies have started and the schedules are settled.

I share all of this ugly information to let you know that you are not alone in suffering the body that you are in.  For many of us, this journey is long and hard with few rewards.  We lose friends, our family may not understand, and we can feel very alone.  Please know that I may not go through the exact circumstance you are in, but I know what it feels like to be alone, frustrated, worthless, useless, ugly, and probably every other feeling you feel.  I encourage you to make even the smallest step toward self-care and self-love.  Every day I struggle to convince myself that I really need to go for my walk (you see I am here typing a blog instead of walking!!) but when I get done, I feel wonderful and I remember that I am worth every minute of effort and love I put into myself.  You are too!!