Monkey and “Friends”

I have read through enough of my own blog posts to see when I began to realize that I was going to have some longer term issues, and one thing I never really anticipated was how my relationships with people would change.  Even how I view relationships has changed.

Church is my home up the street from home.  I remember looking forward to every aspect from picking out clothes to doing nails and hair and lunching with everyone and through the surgery to fix a deviated septum and one to take out the tonsils I managed to remain on good terms.

When the accident happened, I was 4 semesters away from transferring colleges for my degree in music therapy.  As the pain worsened, I threw myself into school and work and volunteering and performing.  I was just trying to get through a tough time.

One day I laid down and barely got back up.  Everything was on hold.  It was about two or three months into 2016 before I went back to church.  It was then that I realized that things were different.  I was different.  I came off of the operating table different from when I went on.

Most of 2016 was spent on recovery efforts.  PT multiple days a week plus home exercises, neuro rehab, and trying to get back into the swing of life.  My neurosurgeon was concerned about my memory loss, more than any of my other symptoms because by six months it should have at least stopped declining.  I ended up with a new PCP who refused to make the referral to the clinic I needed because it required too much extra paperwork.

The pain was coming back with a vengeance and my frustration was mounting.  I chose a different practice and when they got a 2 inch thick file, they decided to start at ground zero.  2017 and 2018 were filled with blood draws, EEGs, EKGs, EMS, 72 hour EEG, endometrial biopsy, swallow test, brain and spine imaging every year, neuropsychological exams, FCE, reactions to medications, trips to the ER, seizures, falls, and more tests.

What have the doctors concluded?

SOMETHING is wrong.

Possibly MULTIPLE somethings.

While my “friends” were dating, working, getting married, having kids, and living life, I was being medically electrocuted to test nerves (like FOUR TIMES!!!).  I was taking memory medication that showed us that my memory loss is not following the pattern  that dementia and Alzheimer’s do.  The side effects were egregious, but we hoped.  As the tests and treatments got more intense, the easier it was to withdraw.

It’s hard to talk to someone in their thirties who doesn’t lead a medical life.  I have nothing in common with so many people and I have a hard time finding common ground with people.  My child is almost grown, I am not interested in children and babies.  I have been single for 9 years, I cannot relate to dating, boyfriends, husbands, love, drama, romance; after the biopsy, no thanks.

I don’t work anymore, so I don’t go shopping or on vacation.  I don’t get invited to anything.  At this point, people know I will only go to an event if I have to go in some official capacity.  Most know I will not stay long, I probably won’t take any photos, and I WILL sit in the truck.

Obviously, these are qualities that make ME the bad friend in all of these situations.  I am unable to adapt because my life has been continuously getting weirder for four years.  I am focused on myself and so everyone else is a little blurry.  It is so easy for me to walk through a room of people and ignore them all.  Sometimes something hurts and I am just trying to find relief.  People catch feelings over this but as it turns out, I can’t really focus on multiple things at once without becoming a monster.

Some of the “friends” just showed their true colors with their words or actions.  I don’t make a big deal over it, I just don’t really want to have anything to do with this group unless it is necessary.  We all do ministry together, and for the good of helping people no burnt bridges because that is not going to assist anyone.  We just won’t be eating lunch together, or chit-chatting.  Part of this is that I am now unable to ignore my feelings about things and I have lost a few filters.  So, I don’t want to give people the idea that we are friends, just that we can accomplish things to help others.

I know that I have to do some growing in this area, but I just cannot connect with people.  I think maybe I am jealous that even if I wanted another child, my body would make that very dangerous.  I spent my 20s taking care of my daughter and working and into my 30s added school.  I dated but my life with my daughter and family was more important than some guy.  Now, my daughter is almost grown and I face the prospect of being cared for my my parents until my daughter or a nursing home takes over.  I feel like I cheated myself out of those things.  I could have taken the time, but I was trying to raise a child.

While I was trying to do everything right, I got rear ended and that effectively ended my life as I knew it.  I spent my whole life from 14 to my 30s trying to make life better.  I did’t fail.  Yet I don’t think people really understand the feeling of constant pain and how that changes priorities and relationships.  Parties mean more pain.  Showers are pain.  Doing hair is pain.  Sitting in a dinner chair for an hour is pain.  Luckily, social convention says that I just grin and bear it and spend two days recuperating so that I am not depriving people of a good time with a poor attitude.  I have an awful attitude, so I stay home.

I go to multiple appointments a week.  I have more doctors than I have people I would classify as friends.  At least the doctors understand what I am going through in a way.  The therapists (I have 5 in different fields) want to hear all about my medical issues.

Everyone else just wants to hear that I am “cured” and back to the Before Michelle and I am not sure that any Michelle actually exists except as a façade of someone who never even really existed.  That and as an online presence.  Michelle is who everyone is friends with.  I am not really her anymore.  She was the enjoyable side of me with hopes and dreams and the real me behind her had the drive.  My hopes at this point at just less pain and I hope this doesn’t turn into a years of suffering thing.  Unfortunately, my real self is prepared for that possibility and it makes everyone else and their lives quite unimportant unless they are in duress.

I changed, and am still in the process of changing and I don’t now how this will affect my role as a minister.  I don’t want to be the reason that people stop coming to our church and I especially don’t want to lose control of my tongue.  Someone who wants to know how I’m doing/feeling will be the catalyst for my explosive anger.  It is by grace alone that I have not already been there.

I don’t know how much longer “Michelle” will hold up, but no one there truly knows me and that is lonely.  Everyone who I thought did has shown that I am simply a convenience in their life.  Unfortunately, in friendship we both need to get something from it.  I get dismissed.  I get pitied.  I get prayed for.  Never just friendship.

Growth may solve this in the future.  I hope it does.  Until then, I have the internet.

Monkey Waxing Wistfully

When we are little we are all taught that though we share many similarities, each person is unique.  It is these unique qualities that make us all special.  We each have a mix of physical, mental, emotional, and intellectual differences that help each of us have a unique personality.  It is what distinguishes from others who may be similar, whatever “it” is.

Many of us work our whole lives developing the spark of talent that became apparent at some point.  Some of us never really planned to do much with the gift except enjoy it and work professionally in another area that we also happen to be proficient in.  We work, go home and have fun, and live.

I remember being entrenched in this lifestyle and loving it.  Even though I went to school for vocal performance, the ultimate goal was to become a music therapist.  I never intended on making performance my lifestyle, although I did a lot of performing because I needed experience to excel in a music degree.  Excel I did.  I worked tirelessly on arias and ear training and piano and guitar and theory and all of the wonderful work that comes with music.  So, while I had a steady job, I was able to perform both at school and on some nice Vegas stages.

I remember being upset at how the surgery was going to set me back at least a year academically.  Then the memory problems worsened and I have no choice which information gets wiped when I have a seizure.  Three years later I sit here and wonder what my life can become.  I have become too unique.  The doctors are wondering what is happening inside of this skull.

Right now being unique doesn’t feel good like it used to.  It was nice to be the only person at the BBQ who could sing an aria acapella.  It was nice to have the best shortbread cookies.  It was great having the black sports car.

Now I feel out of place.  I am surrounded by people who have no idea what I am dealing with.  It isn’t something that is easily explained to most people. Only a certain number of us (apparently) exceed the 99th percentile for functional intelligence.  How do I condense 3 years of medical progression into bite size pieces that people don’t compare to “losing their keys”?  The easiest is to say amnesia, but a lot of people then think that I can’t remember my childhood.  I can say a KIND of amnesia, again, most people aren’t even aware that there is note than one kind of amnesia.  If I say anterograde amnesia, they are not able to break down the word and understand it.

So, what can I do in this situation?  I am actually tired of explaining myself to people because why should I even have to?!  I have been explaining it to the same people for too long for them to keep asking me how I am feeling.  I feel terrible, just like every other day.  I am leaving my house because I have to get out but I am tired of the people.  I would rather go visit anything else.  A tree.  A statue.  A rock.

While people are busy assaulting my sensibilities, I am dealing with many doctors who are all pointing to my brain.  A neurologist who is determined to figure out why I am so special since there is no history in my family and this has been such a long deterioration that is speeding up.  A speech therapist that made a desk of sticky notes and is also concerned that my brain is weakening the nerves in my throat.  That could be the reason food is going up the back of my nose.  The dangerous part of this is that if my windpipe gets affected it presents a choking hazard.

You know what I got out of all this?  I may permanently lose my ability to sing.   I have felt it getting weak.  That is why I haven’t been back to the studio to record.  I am missing my voice.  In the bigger scheme of things, this is actually quite small (until you get to the mental/emotional self) and doesn’t matter.  We are doing PT/OT to help make life a little easier.  It won’t fix anything, but it helps keep me mobile and that is very important.  Must stimulate the nerves and the muscles they control.  I am in therapy to deal with the big changes happening to me and some past stuff.  I changed to a healthier eating plan, I do my home exercises.

No amount of my own labor can bring my voice back.  It is a pain that no amount of lyrical circumlocution can conjure a feeling for.  It isn’t like when my brother died and an extension of myself was gone.  Or like when I realized things were just wrong and life was NOT going back to normal; I felt like my place in society had changed from ‘contributor’ to ‘receiver’ and I felt lost in the world.  An integral piece of my anatomy used to play my instrument is not functioning properly.  I am sad in a way that I am not sure I ever have been.

When I got my tonsils out, it took 5 months to be able to sing again.  I gained a few notes on both ends of my range and I was thrilled to be able to use my pipes.  However, something is going on in my brain and this is just a symptom of something.  I don’t know if this will be it, or if they will unlock the secrets of my brains and get it back.

As much as it hurts, I realize that I may or may not lose my ability to sing.  I am prepared to deal with either of these outcomes because we tried.  I am trying.  If any loss leads to better care for patients in the future, then it is worth losing a voice.  I will make myself heard.  It may no longer be melodious, but it will get the attention of people who have the opportunity to get me where I need to go.  I love singing, but not as much as I love people.  I will gladly lay down a shield and pick up a sword.  This is my training ground.

I hold on to the chance that my voice will go back to normal, but if it doesn’t, then I will grow into what I am supposed to do next.  I can still enjoy music from other people.  I no longer want to hold on to pieces of me that can change or grow.  I will be pouty about singing for a while.  I will look pathetic as I lip sync to songs I once belted out.  I’m going to get it worked out and move forward into my next talent or ability.

If you are “losing yourself” it is ok to feel sad and it is natural to mourn any type of loss.  However, I encourage you to take the frightening steps forward that it takes to find new parts of yourself.  It might take time.  Trying uncomfortable situations.  We have not become so unique that we don’t fit in anywhere.  It just feels that way.  That is an appropriate feeling because some of us are going through some weird stuff.  It’s ok to spend time figuring it out or talking to someone and letting it out.  It’s funny because when I began typing this I was in such a horrible mood, but as I put it into perspective and think about how I can use this to get my message for patient rights out!

Yes, I am a victim of brain dysfunction.  No, I will not allow this to become a part of my identity.  I am a warrior, specifically of breakfast.   I encourage anyone going through rough times to look for positives.  Yes, I have been evicted, arrested, lights turned off, fired, and all other life situations.  I have experienced life and this was the first time I felt like I couldn’t fight because it is my body.  I will just work on my body and in the mean time, get the word out that brain injuries are real and people can seem completely normal and be having a seizure.  Life is weird ya’l!!

 

Thoughts Of A Music Monkey

Really, this entire journey has been fraught with surprises and unexpected twists and turns.  In the very beginning, I was nervous but I had faith that I would come out of surgery with no complications.  I was told that while it took longer than expected, part of that was because the holes where they screwed a vice onto my head wouldn’t stop bleeding so they ended up having to staple them and I took a while to wake up from the anesthesia.

I tried as much as I could to follow doctor orders, go to appointments, physical therapy, and after 6 months my neurosurgeon was concerned about my memory and referred me to the brain center in town.

As time has “progressed” around me, everything has just been a blur.  In my head all I see is a timelapse video of me standing still as the world whooshes around me, but my body and mind are deteriorating at the speed of everything around me.  Here I am in 2016 in my head living in 2018 and while it seems I do so little, I feel like my mind is running all day to catch up to a world that is constantly changing and I am changing but I don’t really understand what is happening to me.  We don’t know why this is happening.

The important thing is that I keep discovering things about myself, good and bad.  I wrote a book!  Who would have ever thought.  It’s like my blog on steroids.  I didn’t think that was anything I would ever do.  I plan to keep my people —I was probably about to lay some earth shattering lines of wisdom but I seem to have blanked out.

That is the problem.

I assume the point I was going toward is that life is unexpected and while I don’t remember much anymore, I am thankful that I have found that I am adept at translating my experience into written words that see to get more flowery as time goes on.  While I feel out of place in time and in the wrong body, I have not stopped.  I am trying to pull the pieces of me that are left together, and gather new pieces that I have found and form a new Michelle.

This Michelle is learning how to deal with mental inconsistencies so that she can stand up and speak out for those who have no voice.  This Michelle is learning to deal with the medical system while batting memory loss, constant headache and nausea, and a trick knee.  This Michelle is learning what to ask for at doctor appointments and ALWAYS having a rational reason for getting things accomplished.  This Michelle puts everything in her phone or it isn’t happening.

The best part is, most of the time, I do not remember that I have memory loss, so I have to really try to have someone with me to remind me to put it in the phone.  It is my battle to fight and I am on it.

I wish I could say that I am consistently positive, but there are days that I really want to give up and stop the fight.  The question that stops me is, “what will I do then?”  If I give up and I don’t happen to get disability, what do I do then?  However, right now I am telling myself that everytime we clear a battlefield we have made room for others to come.  If I cannot be “fixed” then I will use the energy and resources I have to find a cure for Chiari Malformation and to help patients who receive head or spine injuries get promptly and thoroughly examined and imaged and followed up on in a year to help catch decline before it is too late to halt.  I assume that means that major changes would have to take place, however, I have nothing to lose if my memory is gone, so I will fight my way to Capitol Hill if that is what it takes.

I will endure the setbacks, the pain, the frustration, and everything that frustrates me in order to lay the foundation for better healthcare.  I have recently discovered that I am losing control of my left vocal fold.  I cannot sing very well anymore.  My most precious gift is withering away.  I will gladly give it if it means that I will help someone keep their ability to draw or dance.  I refuse to let my suffering be in vain.  I believe I was born with purpose, I have simply been collecting the tools I need to carry out my mission.

What’s your purpose?

The Token Monkey

Accepting change has always been hard for me.  I want to go with the flow…as long as it is going the way I am used to.  Obviously, that is a problem.  Life just doesn’t work that way.  The worst of it is, just as soon as I think I have gotten to a place where I can accept change, here comes some crazy thing out of left field out of my doctor’s mouth.  *BAM* Regression.

I thought the brain pain would be the end of me until the memory thing became clear.  Then I thought we would figure that out and it led to probable seizures.  According to Google, I am prolly headed down the road to some type of cancer.  Seriously, though, I find that each new situation draws out a different fear.  I have feared for my life.  I have feared for my mind and mental faculties.  I fear now that I will be limited by the actions of my body when under control of my misfiring brain.

Losing parts and days of memory has caused these fears to multiply because I never really know what I don’t remember.  I often wonder if I am rediscovering the same fear over and over until it sticks.  Or if whatever is going on is new or has it been this way.

I am currently having a conversation with my sister as I type this about whether or not I stare into space, do I do it often, has it been going on for a while, and is this the first time I have realized it wasn’t normal.  She has told me that I “discover” things about myself over and over and she just goes with it and doesn’t tell me that I have told her before.  I appreciate that she doesn’t assist in making me feel crazy.

Still, the worst part of my situation is that I feel so alone except for the few people who really see what I am going through.  I have stopped trying to explain myself to most people because most people do not understand.  I stopped praying for it to get better because I don’t want to be disappointed if it doesn’t.  I wonder why I bother staying in church when I feel so fake around and disconnected from the people I attend with.  As a congregant I am there to be encouraged.  As a minister, I am there to encourage.  As a human, I am there because I don’t have much positive life experience outside of church; it keeps me out of jail.  What kind of minister am I?  One who knows and understands most of my flaws.

I am prideful, one of the deadly sins.  I enjoy being the best or the brightest or the best looking, but I have been knocked from my self-made pedestals.  I realize I am only human, and not even in the top 10%.  The good out of that is that it is easier to help other people because I am not concerned about everyone seeing or hearing about me doing it.  Quite the opposite now.  It is almost like my penance for all those years striving to be recognized and seen and appreciated.  I want to say that I help people because God wants me to, but I feel more that I owe it to Him for what I have done to people and my own selfishness and arrogance.  I haven’t wanted to get to heaven in years, I just want out of life.  Until I am given my out, I shall serve others’ needs as I am able.

It is humbling to walk through the experience of death and mourning with a family.  I now realize that no matter the race or finances or whatever, grief is grief.  I feel like I know grief so well.  We have spent many nights crying over the broken and lost pieces of my life.  We have joined other families in the ER or ICU.  We have sat with many over a pot of coffee.  When I have grieved enough for them, I return home and grieve the loss of my life and identity.

I used to be so many things that I thought were awesome: awesome employee, great student, talented cook, jewelry designer and creator, landscaper, and definitely a nature loving hiker.  Now I am an unemployed professional patient and I can barely remember the month.  I am the type of person I always feared being; someone who is not a productive member of society.

Medical conditions have made it all but impossible to exercise so I can feel good about my health and body.  Nothing like feeling like a sack of potatoes every time I leave the house.  I can be a nicely made up sack, but shapeless nonetheless.  My self-image is destroyed.  I hate being in this body that doesn’t work right, but at least it still works, so it still gets points.  In the end, it is probably for the best.  I used my looks to use people up and get what I want from them.

Every day that I have to see another sunrise is a day I wish didn’t exist, and I wish each sunset was my last.  I don’t know what other people get from life.  I am looking at going into middle age alone and sick, dreading each day along the way.

If this seems depressing, it is because this is what my depression is like.  It is a struggle that I fight all day every day.  Usually, I choose to do things that will take my mind off of my problems.  So, I spend a fair amount of time at church, I try to get out of the house everyday, and I have indoor activities that keep me busy so that I am not drawn into the spiral that is deep depression.  I go to dance class so I get regular exercise since I can’t drive to the gym or go out hiking right now.

They are called coping mechanisms because there isn’t always a way to “fix” what is wrong.  I can’t instantly heal my body, but I can make sure that I am stretching and exercising it so that I am being proactive about my health.  I can’t do what I want to do, but I am doing something.  I am doing as much as I can to tread water and stay afloat until we figure out what my body is up to.

THIS is the “strength” everyone seems to laud as I go through my journey.  They are so amazed that I haven’t drowned that they can’t see that my nose is barely above water and I am ready to give up.  I am tired, not some hero. I am a human trying my best to keep it together because it feels like I am shattering into pieces.  Putting on a fake smile is not me overcoming something, it’s just that I haven’t broken under the weight of my burdens…yet.  Even I wonder how long I can pull this off for before I need an increase in my meds or have a full-on breakdown.  I hope that I can make it to my diagnosis.  Maybe even my disability hearing.  So far, both have taken over 2 years, so I am not holding my breath.

Should everything fall through and I am stuck in a horrible life, I would at least prefer for my decline to be around people I barely know.  I could never bear for those who once (wrongly) thought I was so courageous to see me lose myself in whatever I am becoming.

If you are dealing with feelings that seem larger than life itself, I encourage you to talk to someone in your support system and that includes family, friends, and your medical professionals.  If you feel like this is it and you can’t take it anymore, please call the National Suicide Prevention Hotline at 1-800-273-8255 because your life is worth living, even if it is to help others realize that their lives are worth living.  I have never needed this number, but I keep it because I don’t know if I will need someone to remind me that I have love in my heart and that is quite the redeeming quality in humanity.

If you are a caretaker or friend of someone who you think may be depressed and holding it in, become a bigger ear and a smaller mouth because they may need someone to talk to who isn’t offering to “fix” a problem or telling then how they can be better.  Sometimes all people need is to be heard so that they can be reminded that they are loved and can love.  The other edge of this sword is that sometimes a decision will be made and you (the friend) will be the one grieving and hurting because there are times minds are made up and all you can do is love until the end.

Life isn’t as simple as picking myself back up, especially when my arms are weak and a knee is missing cartilage.

This. Is. Depression.

Monkey Resigned To Being Determined

I have never seen myself as a strong person.  At times I have been determined and at other times I have been resigned.  I can see myself in either position at any given point in my life.  It has been the driver of the ups and downs in my life.

As a child, I was determined to do whatever it took to be able to take care of myself.  I learned how to follow orders, how to be a sycophant, how to be cruel, how to look innocent, and how to plan the long game.  I breezed through my teen years, high on everything, with great grades and two jobs.  Life was awesome.  I had a goal and I was reaching it while having the time of my life.

I had a steady job, was getting ready to go back to finish my associates in English, and looking to purchase my first house.  Then, one morning, my brother was murdered.  That day I became resigned to living.  I wasn’t sure how to navigate the world without him; he had always been there since I was born.  It has almost been 20 years, and it took the first 10 before I started getting it back together.

I was working and shared an apartment with my sister, who raised my daughter (I am not even gonna lie and say she watched or babysat) while I was working and trying to get back to getting a career.  I lost my job, but that made me more determined to get a business license and get myself back together.

Learned how to make jewelry and after 18 months of searching, finally found steady work with great benefits.  They paid for me to go back to school.  I went for vocal performance, and I loved working and learning and building myself to achieve my bachelor’s in Music Therapy after two more semesters.

I had to get the brain surgery and the neurosurgeon worried about me singing opera again, but we were hopeful the surgery would heal well with few complications and I could get finished with school and go to Louisville.  So I followed the doctors orders, I eventually went to excruciating physical therapy.  I ate a high protein diet, I went for a little walk everyday.  I read and wrote and did puzzles and games.

I don’t know when I realized that nothing was improving.  At 6 months the neurosurgeon was concerned enough about my memory loss to send me to the brain center out here, but it would take over a year before I actually made it.

Life, kept happening, everyday, all of the time.  The weird thing was that I didn’t remember it happening and holidays and birthdays popped up out of nowhere but the passed with no memory.  I ended up seeing a neuropsychologist and he gave me his opinion; I am above intelligence, I have some trouble processing data, my memory is crap.

When I read the results of the test, I cried.  While indicating something may be wrong, I was given a set of recommendations I had to spend a year filling to get to the brain center.  I knew when I read the results that I was going to be put through the dog and pony show.  Slowly, I made it to over 17 doctors, at least 6 blood draws for specific testing, SO MANY MRIs, 2 EEG sessions, three sessions of conductive nerve testing (medical electrocution, though it isn’t THAT bad…the first time), an endometrial biopsy, so many urine tests, meds meds meds, over 200 cases of ginger ale, and who knows what else.  I became resigned to being a professional patient.

When I finally made it to the brain center, I was informed that I was not an average patient and was not presenting with symptoms that really went along with the Alzheimer’s or Parkinson’s so maybe this wasn’t the best place for me to get care.  This was THEIR neurologist, and the neuropsychologist agreed.  I lost even my resignation that day.  I was ready to just give up and exist, whatever that meant.  I had a followup with the neurologist but I didn’t even want to go.  Then I was told I would have a different doctor and I couldn’t see myself explaining all this to another doctor.

I went to this appointment because it was important to my family to try everything.  Turns out I got the head of the clinic.  The top guy.  The guy who listened intently as I expressed my fears about being told I was just forgetful or him not believing me and I just asked where I could go for help.  This guy LISTENED to me, and then asked relevant questions that no one ever thought was important.  Then he talked to my mom and sister and got their input on what they thought was going on and how it looked to them.  He restored my determination because figuring out what was going on seemed just as important to him as it was to me.  He also had a lead to go on: Seizures.   Family history, brain out of position for over a year from car accident, large chunks of memory gone.

Left that visit feeling like my crops had been harvested, the animals fed, and the front lawn was freshly cut!  He is willing to go there with me and he believes what I am saying about my memory loss.  Ordered tests and therapies (I am in the process of scheduling all 3 of them). I am currently 28 days to my visit.  7 days until my MRI.  Praying we don’t order more tests.

Right now, I am slowing down a bit, but I am determined to find some answers.  Even if the answer is ‘unknown cause’, well that is still enough.  I hate to think I could get discouraged at this point, but here is the thing, I know that I can.  Just getting to this point has taken so long, but I wondered along a lot of the way.  I lost steam along the way.  I am blessed to have a family that carried me through those times so I wouldn’t give up.

The worst of it is, I don’t think that most people who know me really know the depths of depression that I spiraled into.  It has taken a year of therapy just to start to become OK with not working.  My parents carry my ENTIRE financial burden.  The people we know and are friends with don’t know how much they have sacrificed for me and my daughter.  My sister babied me for MONTHS after my surgery because my recovery was hard.  People don’t see the work she put into holding my cup up because it was too heavy for me.

Sunday at church, a lot of people pointed out my cane and were surprised.  Although they see me every week, they have taken no notice of my physical and neurological deterioration.  I try to keep my business private and the church is not entitled to my health status unless I am contagious.  A lot of the things people say to me really are thoughtless and damaging.  Not on purpose, but because everyone lives out different experiences and at times we try to relate but the connection is missed.

I say all of this to let you know that if you are blessed with a body that works, don’t question the body that does not.  Just say something kind and positive.  It could be a compliment on their hat, or a comment about odd weather, or ANYTHING but what you suspect is wrong with them.  They need people to keep pushing them in the area of determination and not being resigned to that girl who complains (after I ask her how she is doing and she gives me an honest response and it is one of her BAD days) all of the time.

If you are in the position of trying to stay determined but people are bringing you down, don’t be afraid to tell them that you need positivity.  Even in the bad things we can find some good in the situation or outcome if we look for it.  Try not to be mean, but if you are, don’t be ashamed to apologize.  We want to spread awareness but sometimes we just want to be left alone and we let loose on someone.  Apologize.  They probably had NO IDEA what you are going through.  With that apology, add in anything the two of you can do in the future to avoid conflict.  Educate them on dealing with chronic illness, chronic pain, and and other type of disabled person so that they CAN be encouraging and maybe give someone that push they need to stay or get determined.

If interacting is just going to be problematic, just say “good morning” and keep on going!

Sometimes you can just see that someone doesn’t feel like dealing with anything, even kindness and concern, as they DO NOT block pain.

Go forth and be loving!

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!

In Monkey Time

A lot of people have been attempting to gently push me back into a life full of activity.  They want me to sing.  They want me to go out.  They want me to sing.  It’s wild!  I think people worry that I am sitting at home being miserable all of the time.  Really, it is only “a lot” of the time that I sit around being miserable.  The times when I feel OK or better, I am doing my best to live it up.

I practice ukulele to help keep my fingers limber (although it hurts after ten minutes).  I swim and enjoy our pool (but then I have to take a nap because I am worn out).  I go to the gym (then spend an hour stretching so I can move in the morning).  I stretch in the morning (so I can move for most of the day).  I drink coffee (sometimes I have to actually brew it myself). I devise methods for hanging up my clothes.

Doesn’t this sound like the life?!  What makes it difficult is that I used to be able to do all of these activities and a whole lot more.  It has taken over a year of behavioural therapy and psychiatry and music therapy to just feel ok enough to allow myself to rest when I KNOW I could be more productive.  I just can’t push myself the way I used to.

At this point I don’t think that I want to anymore.  I have spent 20 years working and adulting so I could have something to show for my efforts at this point in life.  Everything I gained is inside of me except for my daughter.  I have gained (some) wisdom from my foolishness.  I have acquired (some) knowledge from my adventures.  I have more insight due to my failures.  I have grown internally like a weed on steroids and protein powder.

Yet, I am human, and I wish I had been able to buy a house or keep my car or any number of things.  Now, I ask myself if I would have had time to enjoy it anyway?  I was a workaholic.  I would have passed out exhausted every night in a beautiful bed that I never had time to admire.  I just wanted a normal life.

Now I realize that “normal” is just what happens all the time.  Right now my life is completely normal FOR ME!  The key was to discover what I felt the word ‘normal’ meant.  I thought it meant what everyone else does, but we all do different things, so that isn’t an accurate description.  Now I think of ‘normal’ as the usual routine.  When the routine changes, we end up with a ‘new normal’ and I think that is a healthier way for me to look at the world.  It is important for each of us to define our own goals and learn how to acquire the tools to reach those goals.

I get a little discouraged because I don’t have any type of idea how my life will change over the next year or so.  I am waiting to be tested so I know if my neurologists suspicions are true or not.  I am waiting for my disability hearing.  I am waiting for the ability to make an informed decision about my life and sometimes the hardest thing to do is wait.  While I wait I try to keep myself busy with the things listed above.  I hope that doing them everyday helps me regain stamina and energy, but even the results of that will take some time to manifest.

Hopefully I have enough years ahead of me to find what it is I need to feel like my life has a fulfilling purpose.  Maybe I just am not old enough yet and all the pieces are not in place.  It will all happen when it is time for it to happen, not when someone pushes me into doing it.

I doubt that I am the only person who is going through this and my wish for everyone out there who sees this is that you learn to listen to your own mind, heart, and body.  Learn what is right for you and not for other people.  You are more than capable of making your own decisions and asking people to abide by them.  You have the ability to cut negative people out of your life.  You have the ability to change paths.  You might have to clear a new path or climb a tree, but you will amaze yourself continually along the journey.

If you are reading this and wondering if I am for serious…YES!  I AM FOR SERIOUS!!  So serious I am using poor grammar.  While I (and many other people out there) look healthy enough to live like Larry, I am missing some skull and some neckbone, so even holding my head up is work.  I don’t keep my head tilted because I am draining my thoughts, it is because my neck isn’t always strong enough to gracefully balance 8lbs of skull and brains.

The injury to my brain has left me with long-term if not permanent issues.  This isn’t to say that I am giving up my badge and gun, I am just going on patrol duty for a while.  I have to build back my strength in all areas.  I deal with very erratic emotions (they are so awful), pain that is absolutely amazing, memory loss, digestive issues, nerve dysfunction, and a litany of other smaller but just as annoying issues.  This isn’t ‘wait six weeks and get back to life’, this is ‘wait six years and measure your progress, good or bad’ and that feels like forever.  It is no promise that I will be fixed.  However, I am hopeful that I will regain more use of my memory and my hands.

At less than a thousand words I have taken three breaks.  This affects my life in a way most people can’t see.  I hope that by continuing to blog and write that I am able to build up even the strength in my hands so I can share my experiences.  I hope to make visible the unseen struggles of chronic illness.  If you don’t have an illness or condition, you can still be an advocate for those who do.  I don’t even know what is wrong with me fully, I am in the process of advocating for medical medical workups after traumatic incidents.  I may not have my problems had I gotten the proper treatment 4 years ago.  I don’t want more people dealing with what I am dealing with, so I am doing everything I can to share my knowledge and experience so that people have a first hand account to consider.

Most of us wish to be contributing members of society who work and live ordinary lives that are nothing special.  In many cases, the only thing stopping us is the society we live in.  We shun those who can’t work or are injured or ill, we have to implement laws just to get accessibility to ordinary places for some people, and we even have to prove that we have a medical issue TO DOCTORS, never mind the surgery scar or my pharmacy-in-a-bag.

Let’s work together to find a way to get through this tumultuous, beautiful life.

The Fat, Ugly Monkey

*Warning, I am speaking my own truth as I see it.  If you are sensitive, that is not my concern.  This is about me, not you.  Thank you.

There are days when all of the ugly must come out.  Today, I feel ugly.  Inside and out.  I try not to think about it most of the time, but some days it just hits me and I have to feel it.  There is this body-positivity thing happening that I can’t say I am fond of.  No, Jenny, I can’t just love myself when I am 80 lbs overweight.  I can’t find the beauty in this lumpy, bumpy, squishy body I call home.

Am I thankful for what it can still do? YES!!  Although I have issues sometimes, I can still walk.  I can talk and think most of the time.  Very few things hold me back and I am usually unsure of how to stop moving forward.

This extra weight though.  I can feel it on my ankles, which used to be so thin and shapely, and now swell under the pressure from these giant trunks I call ‘legs’.  They used to be so shapely and muscular, now they have varicose veins and scars, and the bumps and lumps of cellulite that wiggle and jiggle with every movement.  They used to be able to squat over 200lbs, now they can barely squat at all.  They connect to the rest of my body at this thing called ‘buttocks’ but could be mistaken for a misshapen sofa cushion.

Luckily, I am balanced in the front by my pregnancy pooch that never went away, I just left it, I guess.  My whole midsection has become a mess of rolls and folds in front and back, topped off by a chest I can’t even stand to look at.  With the extra weight, my shoulders just look droopy and it merges into my bat-wings very nicely.  My lower arms and wrists have no real tone and have lost their natural shape.  Even my long fingers are looking like under-stuffed sausages.

My neck used to be so thin and graceful, it is now what I long referred to as a “ham hock”.  My chin used to sit alone, but now it has more chin companions.  Luckily, I know how to take a good picture so you don’t see all of them.  Even the shape of my face has just puffed out and has no real definition anymore.

For some women, they would take pride in every negative trait I listed AND THAT IS OK!!  I am unhappy with myself, but I make the changes I need to.  Except, I can’t work out everyday.  Right now, I can’t work out at all.  My doctors have no idea what will or won’t cause a seizure right now and I have to be very careful that I don’t work up my brain and body.  So, I have cut my calorie intake.  Increased water.  More vitamins.  All of this, to not GAIN extra weight while I wait for test results and possibly more testing.

Inside, I feel like a whole other person.  I used to be someone in my own mind.  Not someone special, but I had qualifications that I met.  I was a student, I worked, I was a mom, I volunteered in multiple places, I hiked, I took road trips.  I had the things that made me someone who I was proud to be.  I hadn’t bought a house, but I was working and living my life.

Now I am unemployed, forgetful, lethargic, boorish, and I just can’t stand people half of the time.  I can barely do my laundry.  I can’t drive anymore.  I have a litany of medical restrictions.  Some days, I don’t get up except to go to the bathroom.  This is not the person I want to be.  I am now seeing myself as an unhappy person in a fat person’s body and I don’t have all of the tools I need right now to fix any or much of that.

I go to therapy.  I do yoga when I can.  I attend dance class (mostly for the stretching, but I hope to learn some dance) when I am able.  I watch my diet for the most part.  I get out the house, visit friends, read, listen to music, draw, create, do puzzles, and all sorts of things.  None of these things brings me the the health that I want.  I don’t even seek happiness.  I just want to be healthy again.  If I am healthy then I have everything I need.

Getting there is the hard part.

I am not saying my life has no value, I simply am not happy with myself and right now some medical conditions (that were caused by a car accident) are getting in my way of feeling healthy again.  I feel so defeated some days.  I wish I could afford surgery to just make me skinny, but I think that wouldn’t help my mind feel better.

Working through chronic illness is a process, including weight loss and finding new things that make you feel productive.  I suppose there is the chance that I will never feel normal again.  I hope one day I will, but if I don’t, I hope I learn to live with feeling this way and not feeling guilty.

The Monkey’s Plan: CANCELLED!!

I sometimes wonder what I would be doing right now with my life had I not been in the car accident.  My plan was to move to Louisville, Ky, and finish school.  Then come back to Vegas and open up an art therapy clinic with music, visual, and movement arts.  I was prepared to make every sacrifice, to go broke and bring other people’s bank accounts with me if that’s what it took to make that happen.

Now I don’t spend as much of my time wondering about what-ifs because who is to say something else wouldn’t have happened?  I sometimes try to imagine a future but it doesn’t work like it used to.  In the Before Time I always had a vision of my desired future to strive toward.  I am not sure when that vision faded and was replaced with nothingness.

My life is moving forward, but I am stuck in a sort of limbo that I am having a lot of trouble getting out of.  I really want to have my life back but I realize that is not going to happen.  I just can’t seem to make myself want another life.  I don’t see a life for me as valuable as what I had planned.

I feel like I wasted so much time in school, performing, rehearsing, recitals, practicing, and preparing for a life that I won’t have.  I feel like I wasted so many valuable resources trying to achieve a dream that has now died and haunts me.  I could have saved money and gas and spent more time with my daughter and family.  Now I am left with nothing but knowledge that borders on useless and an intense desire to speed up time.

The worst part is that whatever place I find myself in, I will likely stick to it because I am not too keen on chasing my ambitions anymore.  I just want something that is mine plus peace and quiet.

If the Cleveland Clinic is able to get me back into the job market, I will just travel with the herd and do what I have to do to survive.  If I can do that until retirement, then I will be ok.  That was always the end goal was to work and make it to retirement.  As long as I am a productive member of society, I am ok.

In the same breath, taking a job means stopping my extra activities.  I am no longer in the position to say ‘yes’ to everything and so I would stop all of my volunteer work so that I can be as effective as possible on my job.  I then have to ask myself is the monetary compensation worth more than whatever it is I get out of volunteering?

I hate to even think of the question because I would look and say that volunteering has brought me not much but I enjoy it.  Volunteering isn’t really about what I get out of it, which incidentally is often a headache and back spasms.  Yet it makes me feel like I have done something important.  The downside is that no one will accept my ‘feelings’ in lieu of rent or bill payments.

If I could live off of volunteering I would.  It makes me feel so good.  Then at the end of the day, I have to go back to my life.  I miss having some control over my life.  I miss having money to do stuff.  I miss that feeling of satisfaction after I got the text that my check was deposited.

Having a rare condition is more than just the physical changes that overtake my body.  It is how those changes affect my ability to live and function everyday.   One of the things that has never bounced back is my energy level.  Do I think it will?  With some concentrated effort (Physical therapy is in the works) hopefully I will have the stamina to hold down 40hrs a week doing something that will pay me enough to live and take care of my daughter.  In exchange for being able to survive I will have to give up something else that saps energy away.  I have to have time to rest and recover, especially in the beginning.

When I was told that there was a program that was solely to help reintegrate brain injury patients into the working world, that changed my view of what was now possible.  While I have a business license and would love to be creative and sell fashion, I prefer a steady job where I can just do what I am told to do and go home.  I don’t have to be in charge, I don’t have to make the schedule, I just have to perform some task for 8 hours then I am free to go home.  Just the thought of regaining that portion of my life is so enticing that I can’t help wanting to start this program yesterday!

Will that mean the end of funeral planning?  Probably.  Cooking?  Yup!  Teaching? Yessir!  Five Bible studies? Mmmhmm.  Yet it can be the beginning of a more familiar and comforting ‘new normal’ and that is what I have been looking for.  I am tired of my life wasting away while I come along for the ride.  I have learned so much in the past three years about suffering, I think I could survive even the worst job.

I guess I just miss my life and if given the opportunity right now, I would walk away from everything I do to work for the next 30 years and live in obscurity.  That has always been the end goal of my life dreams and that is what I am looking for.  I feel awful that I would walk away from my position and duties at church and the other places I volunteer, just because I prefer having a paycheck.  I just want to be normal again.  If I have the chance, I’m taking down the blogs too.  I won’t need to share my life because it will be normal again.

I would give anything for my life or some semblance of it back.  I don’t know how it would affect my Christianity or how it would affect my relationships with people, but I want that normalcy back.  Whatever that is.

If you have made it this far, congratulations!  I can barely survive the ramblings of my own brain and yet here we are.  This is the very reason I try not to think about any of this stuff.  I have a thousand feelings that I can’t seem to resolve.  I know my life will never be the same, but I can’t imagine anything else and that scares me.  Feeling like I will always be forced to settle for a life that can never measure up to my dreams takes the wind out of my sails.  I will settle for whatever life gives me because in the end I am thankful for every ability that can still be redeemed.

This is one of those things that I work through in therapy.  This is why I recommend therapy so often.  Having a chronic condition in your body affects your mind.  It’s good to talk these feelings out with someone because they are valid and should be recognized and acknowledged.  Life is hard but with a good support system we can get through.  It will involve some tears and some effort, but we each have the ability to rise above and make the best of whatever situation we are in.  I hope you have people around you who listen to you and if not, find some.  You are worth having your story heard and getting support to get through life’s tough times. It’s a hard road, but we can do it!!

The Monkey, Life

This has been a difficult 7 days.  Getting our washer, dryer, and dishwasher has now become an ongoing nightmare.  My uncle died.  A friend’s baby died.  Another friend’s brother died.  My sister is not feeling well.  I mean just a mountain of pain.  As someone who desires to help, there really isn’t much I can do right now.  I am in the place where I have to experience the pain that I often deal with in others.

The best part about all of this is the birth of a little girl to another friend of mine.  I am not a “baby person” but in these times we celebrate every single thing that we can because we need every ounce of joy we can find.  I suppose at times we must shed our tears while we smile and that is ok.

The next few days will fly by.  Funerals I can’t attend, a memorial to plan, a new life to welcome into this world, phone calls, paperwork, cards, and so much more will happen.  I know that while life moves on for most of us, a few of us will be stuck in moments of time experiencing the surreal feeling of unexpected stillness.  My aunt will have coffee alone, but I expect for a while she will make enough for two.  My friend will walk up her stairs every night and come face to face with a baby-less nursery.  My own mother will only have one sibling to speak of in the present tense.

While I was going through my brain stuff, my uncle was going through his cancer stuff.  Multiple myeloma.  A piece of me feels awful because my mother made the choice to be here with me instead of spending more time back East with her brother.  As a mother I would definitely make the same decision in that circumstance, but as a girl who has lost her brother I know how badly she wanted to be there to support him.  I am grateful to have a mother who is willing to sacrifice almost everything to help me.  I am glad that she made it back out there and was able to spend time with him before he passed.

What does all of this have to do with Chiari?  Well, life doesn’t stop happening because we had surgery or can’t get up some days.  Just as I affect my family, my family affects me.  I don’t wish to have a headache AND mourn, but I don’t really have a choice.  Chronic illness doesn’t really take a day off.  Trying to make sure that my emotional turmoil doesn’t translate into increased symptoms is a mixture of therapy, coffee, yoga, the gym, cartoons, music, and blogging.

If you have a chronic condition just make sure to listen to your body when you are going through ANY difficult situation.  Dealing with emotional pain takes a lot of energy and there is nothing wrong with handling it in whatever way is healthiest for you.  When I got the news, I had about six hours before I was emotionally run down and I turned off all of my devices , put my CPAP on, and went to sleep.  I woke up, went to the gym, then went back to bed.  Did I miss phone calls and text messages?  Sure!  Did I get back to everyone when I was well rested and emotionally available?  Yep!  Everything survived when I took a break for myself and NOBODY was upset.

If you are just peering into the lives of the chronically ill and pained I invite you to imagine how the world would go on if your leg broke.  Now, imagine that everyday except maybe your leg broke off and now you have some medical issues.  You may have also developed depression.  Also your bladder doesn’t work right.  This is your new life.  You get to keep all the hassles of your old life (bills, mortgage, cooking, taxes) but now you get to marry them to all of your new problems.  Also, you still have the unexpected auto breakdown, dead fridge, and air conditioning troubles.  Then…BOOM!  Tragedy!  On top of ALL that other life stuff.  You would want to lock yourself away sometimes.

It’s alright to take time for yourself when you need to.  People may think that you are lazy or disinterested, but those people can’t appreciate what you go through on a normal day, let alone a day when something is very wrong.  You know your true intentions and that is all that matters.