The Monkey’s Extension

As you may or may not know I received a shillelagh for Christmas and over time we have become pretty close buddies.  I have been advised to keep it close by because my seizures aren’t quite under control yet so I do have periods of altered awareness and I am not always focused enough on walking.

Recently, I have had a number of incidents at church (of ALL places, *sigh*) concerning it and my health in general and I want to cover a few points that I think (THINK) most people would agree with.

• How you ask someone about their health matters.  Problems can range from ordinary to embarrassing to rare and anywhere in that spectrum.  People have actually asked me how my brain was doing.  Nevermind that I an entire human.  I have walked in with a cane and there is no, “Hi, Michelle!” because it is really, “How did you hurt your leg? What did you do to your foot?  Did you fall?”  and while I realize this is all done out of “concern” it is often to satisfy a personal curiosity about something that really isn’t your business.  Suggested phrase: Hi, Michelle!  How are you doing?  It gives me room to answer in a manner that I find comfortable without feeling like I am spilling all my beans.
• Giving advice is like giving flowers.  The gesture is nice, but really, I am allergic to this type of toxicity.  See, I have a neurological condition called “I’m not quite sure but I have a theory (my neuro)”. So, I believe it is understandable when Jennifer and Brenda want to be supportive, but you are an accountant and a grocery manager, neither of which involved the type and investment of effort put into learning about the dysfunction of the human brain.  Yes, I tried kale.  Yes it was an organic.  Yes I do a yoga every day.  I diffuse oils.  I meditate.  I drink green tea.  I pray.  Yes my diet has magnesium in proper amounts.  Yes my blood panels are stabile.  After doing all of this, I then have a seizure and I can’t get to the oil to cleanse a chakra, and we are Christian, that isn’t a thing for us, is it?
• For many of use who became disabled as adults it is hard to transition to a completely different life.  We tend to form tight bonds with the people and things that make us feel like our old selves, but we also form bonds with the items that help us get to feel and act independently again.  DON’T. TOUCH. MY. MOBILITY. AIDE. My shillelagh has been touched, grabbed, someone even tried to see if it would snap!  Why?  That is like trying to break my leg.  I need that “thing” and in fact, I have grown quite fond of it.  I have spent most of my life as an able-bodied person and it has NEVER dawned on me to play with someone’s walker or worse, imitate them using it.  This is thoughtlessness that occurs at the level of leadership and I’m just trying to be at church minding my own business.  I am just not sure if I should be flattered that my struggles bring you so much joy.
• Keep your hands to yourself or offer a handshake.  I have literally had my arm grabbed while walking through the lobby (of ch*rch) as if I am a piece of furniture and try to pull me or spin me around.  I have begun to aggressively ignore this type of activity because should I confront the people who do these things I might say things.  My mouth can get a mind of it’s own and when it does its only intention is to cause emotional pain.  Of course there is the chance that we have the random encounter (I am a church ninja when possible) I will often give a handshake because people who know I have had brain surgery still squeeze me as if I had enough bone to support all that love.  If I can hug you, it will be soft and fast, please do not trap me in your brotherly love death-grip while swaying side to side.  I already have trouble supporting this big ole head of mine, I do not need you to squeeze the life out of me.  The most ideal interaction for me right now is a brief wave and hi as I move from one place to another.  Chances if I stop to greet you I will get a hug, be asked why I am using a cane, given advice to bathe in kale and asked if the surgery didn’t work or what?

I know a lot of this sounds harsh, but I am saying this through the anger and frustration that I feel when I am reduced to my cane or my conditions.  I just want people to say hi and not see the cane as anything different than my arm.  I want people to respect my shillelagh like they do my purse.  Leave it alone, it isn’t yours: it is personal.

Much of my time is spent blogging, vlogging, and chronicling my life on Instagram spreading awareness about my conditions, about what I am going through, and while so many of the people I know have access, they don’t bother to really look past what they can find out about right now.  No one wants to read about my worst days, but are so quick to point out how great I look and how well I must be doing.

I know that I have to get to a point where I can use these as teachable moments as opposed to episodes of intense frustration and anger, and I hope that I am getting there.  I also understand that I probably am going to have my moments, but I promise to learn from each one and better myself so that I can be a good representative and be a more emotionally rounded advocate for patient care.

HOWEVER, this does not excuse inappropriate behaviour toward someone with a disability, no matter how close you think you are to them.  Be kind and civil.  Be respectful.  If you wouldn’t do it to someone you greatly respect, don’t do it to anyone else.

The last point that I am going to make is that you don’t need to know every single thing happening in my body (and you won’t unless there is a reason) and in no way are you entitled to know unless you are my caretaker or you are paying my bills.  I am also not required to give you my attention when my body is demanding my attention.  So if it seems like I am ignoring you, it is because I am on purpose because I can only focus on one thing at a time.  Hugging you is not worth bladder failure.  It never will be.  Stop getting our feelings hurt and try to see that I am dealing with a thing that none of my 28 doctors can fix or really help right now.  I have a team of people shrugging their shoulders and hoping the guy with the OTHER PhD can figure it out.

Of course, having said all of this, I try my hardest to put on my fake smile and recently being more social because I don’t want to suck all of the time.  I just want a lil more respek put on my cane.

If A Monkey Had The Chance…

Today my sister asked me how my new meds for seizures was working.  I told her that I think it may really be working.  Of course, it makes me sleep half of the day but everyone tells me that my body should get used to it in a few weeks.  Suddenly, my whole mind opened up and I saw myself as an actual contributing citizen again.

I pictured myself waking up and going to work, coming home, making dinner, taking a shower and going to bed and doing it again for another thirty years.  If I were somehow able to pick up what is left of my life, I would recede into the background and go back to a quiet life where I only sought the comfort of my pets.

There would be no funerals to direct or classes to study for and teach.  No walks or charity cooking.  Just living my life the way I always wanted.

Of course I have to ask myself how do I justify leaving the arena of charity work?  I wouldn’t be!  I would simply make a lateral move to the funding portion.  Instead of seeking funds, I would be in a position to provide funding for research.  That is my biggest hope is for more funding and I am not sure that it matters how I achieve that as long as it is legal and moral.

Even at church I would simply move from minister to congregant and that doesn’t mean I won’t help people or read my Bible, but I am not going back to working AND being a minister full time.  There was a time when I wanted to devote my life to serving in ministry, and since that came to fruition my life has been a wreck and I hate living this life.  I hate having feelings and having them hurt.  I hate this broken body and brain.  I hate having to be a good example all of the time.  I hate feeling lonely and forgotten.  I miss the touch of humans but not their over-perfumed hugs.

The thought of feeling like my life is “normal” again is tantalizing.  Yet, in my musings of doing what I want to do, I feel like I would end up with a type of chasm in my self that I would try to fill with something.  Or maybe I could just learn how to chill out.  Maybe the chasm can co-exist with the rest of me.

Does this make the time, energy, and money I have put into awareness and fundraising worthless?  Of course not.  For the time when I had nothing better to do, I helped raise awareness.  I have devoted many hours of my life and the lives of many other people to raising money for Chiari Malformation.  I just want to be a different part of the process now.

I just don’t understand why I feel guilty about it.  Do I owe my everything to everyone?  How much do I have to give back for it to be enough?  What standard am I going by?

Most important, what if I am not able to go back to work anyway?  Will I continue doing charity and awareness work because I feel obligated or like I have nothing better to do?  Will I remain doing the same thing day in and day out because this is the hand I have decided to play?  Is that wrong?  I have no idea.

This is one of the reasons that I hate hoping for anything.  Nothing worth anything has ever come of my hoping.  I will be crushed if my doctor takes my license.  I will feel useless if my disability goes through and I am legally “disabled”.  I am not sure what you call the next step after you feel your life has been ruined and then destroyed.  Vaporized?

I don’t know how things will turn out.  I got the referral to the seizure clinic in Cleveland, but if the meds work, what is the point?  I am not about wasting money or time.  So much has been wasted in the past three years.  I think this weekend will show how well this medicine is really working and then it will hopefully shed some light on future things to come.

Honestly, though, if I were given the opportunity to go back to to life making money and paying taxes, I wouldn’t look back.  I would archive my blogs, change my social media, and just be a normal person and maybe never talk about this dark time in my life.  I would love for this to be forgotten like all of the memories I have lost along the way.

The Monkey’s Phantom Pain

So, my left foot felt like it was being stabbed in the sole last night.  My left hip was in pain, and I assumed it was just my body looking for more attention.  As we left church, the pain became just a burning sensation when I tried to walk or it touched something.

I wake up this morning, step on the left foot and the whole thing hurts up to my ankle.  So, I stepped on the good foot, and hobbled my way through the morning until I couldn’t take the pain anymore.  While all of this was going on, I was blessed with cramps (yay, no baby!) and my headache began to intensify.  I already know that Headache + Cramps = FIRE IN THE HOLE!  I have already apologized to my family members in advance because I can’t get my shot until Tuesday and by then, the house could be on fire.  Not literal fire, but mass emotional upheaval.

I decided to take a nap.  I wasn’t sleepy, but sometimes the pain wears me down enough to just sleep.  Sure enough, I woke up, put down my left foot and now the pain has risen above my ankle.  It’s making it hard to walk and the shillelagh is becoming my best friend.

There isn’t much to do until I see the neurologist.  Four days away.  I suppose by the time you read this I will have already gone, but will have posted an update!  It is difficult to just wait but really nothing that can be done about it.  Most appointments have been cancelled so that I am at less risk of hurting myself.  I am hoping that I can get through these next few days gracefully.  Especially Sunday.  I plan to be at church no matter the pain.  I just have to keep my mouth under control while I am there.

The biggest issues are pain and boredom.  When I am in this much pain it is hard to focus on something enough to be entertained or distracted.  I suppose that is why I just try to sleep.  I don’t take pain meds and while some of my meds help with nerve pain, I can only take them so often because of their side effects and they weren’t prescribed for acute onset pain, so they aren’t the way to go.  I hope that the neurologist has a plan because otherwise, we gonna talk about getting a new brain.  There is nothing wrong with my leg!  I have had it tested.  It is fine.

For me, that is the most difficult part to accept.  I can handle my foot hurting because it was run over by a car or I dropped something heavy on it.  I cannot wrap my mind around my body feeling this way just ‘because’.  The nerves are upset today so they are in rebellion.  Well, that’s just great, we couldn’t save this for some other time when I was less busy?  I have no time for this nonsense.  Yet here I am, dealing with this nonsense.

How many people out there are dealing with this nonsense?  Nerves getting on your nerves?  ME TOO!!  Random muscle spasms?  ME TOO!!  One leg in pain and the other asleep?  ME!  TOO!!

Where do we go for respite?  I know not!  What I do know is that eventually, I will have some kind of answer as to what is happening in my body.  I have hope when I get answers that it will help others to get answers also.  We have to be the lights in the darkness because right now, medical science has so much to learn about the brain and we are the key.  We have to be willing to endure pain and tests and waiting and tests and surgery and tests and even tests!  I chose to disregard pain management because I don’t want a bandage.  I want my wound tended to and healed.  If that means it hurts, well, there’s always sleep.

I don’t expect everyone to make the choices I make because we each have to do what is right for our own lives.  If I were able to work, maybe my pain management choice would be different.  I did try it. Facet shots in C3 and C4 and I remember the sound of my tears hitting the floor as they moved from one area to the next.  I was strapped face down and there was a hole my head rested in where I could see all the feet and the floor.  I had to cry in silence so nothing would be damaged in the process.  So it isn’t like I haven’t tried.  Since opiates do nothing for my pain and they haven’t given me any type  of actual diagnosis relating to my nerves, I am going to just wait until we figure out the problem.

The nerves function from the neck down.  Anything I feel is originating in my brain.  See, that is where the hard part lies.  We understand the heart and how it is built and functions.  We understand muscles and bones and lungs, but we are severely lacking when it comes to knowledge of the very organ that holds our knowledge.  Somehow, this jelly-like pink blob full of wrinkles has control over not only the functions of the body, but also forms the very thoughts and ideas I am using to write about it.

We know that it can be injured and people can survive.  We know that injury to it can lead to change in personality.  We know that some people are just born with brains that seem off or different from the majority either in a good or bad way, depending on the difference.

We don’t know the actual mechanism by which it functions and malfunctions, though.  We have our theories.  Most neuro medications are based on the theory of how certain receptors work.  Then when something major goes wrong, we aren’t sure why, but that is what starts giving us insight.  So, I want them to find out all they can from my brain and add it to the existing information so that one day a cure for Chiari Malformation can be found.  Or a better treatment plan for ANY brain issues.

If your brain is being a jerk, know that I understand.  Don’t hate on yourself because of your brain, even if you really want to because your brain is special and the right doctor will help you understand why and how to help.  It takes time (I was decompressed THREE YEARS AGO!!) and that time may not be fun or easy, but you can help be the key that unlocks the mysteries of the brain.

Still, if you are able, take time to rest and sleep.  Journal and talk to someone who can listen.  Don’t let the pain overtake your beauty.  Let your hurt out and allow others to help you bear your burden.  Our loved ones often don’t know what to do, so it is up to us to inform them that we just need someone to listen and possibly make dinner tonight.  Also, LOOK FOR JOY in things.  Flowers, birds, puppies, trust me, this helps balance out negativity.  We get to choose how we handle even the worst of days.

Choose wisely.

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.

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’s Image

Looking through some posts, I noticed that one thing I don’t spend a lot of time on is my body.  Well, of course I tell all of the awful stuff about it, but not so much about my appearance and how I feel about it.  Without going into exact weights, I gained 60 lbs after my surgery because I was unable to do much physically, but I was super depressed and already used to a high calorie diet because of my lifestyle prior to surgery.

I had so many other things to worry about that I did not focus on my body anymore.  Honestly, I have always had a vain streak that led me to keep myself at a size that made me happy.  Right now, I am beyond that size and I have altered many things and gotten close to half of the gained weight off.  It has been a struggle so I thought it would get easier with a gym membership.  I LOVE the gym.

The problem I didn’t foresee (but should have) is that when I have a headache, none of that exercise is happening.  Still, my body will often want to consume the regular number of calories.  It has been a challenge for me that has ne weighing my food to stay on track.  I have to take into account that if I don’t exercise, I HAVE to find a way to lower my caloric intake.  Little by little, I am making it work.  Now, I go to the gym if I haven’t had a headache in 36-48 hours.  I limit myself.  I ALWAYS stretch my back after any exercise.

These things don’t get rid of the headaches, but they help keep them at a lower level.  They aren’t even a failsafe.  I could treat myself as well as possible and still get a headache that sends me to the ER.  This is the sort of thing that ends up being on my mind.  Right now, I am concerned about my weight, but my immediate concern is usually my level of pain.

Then when I look in the mirror, I see so much of myself.  I certainly didn’t start off this size.  I want to be smaller and more importantly, I want to be physically fit.  I don’t need to be tiny, but I know I am overweight.  It bothers me because I try so hard, but I can’t contend with my pain, it wins every time.

Mostly, I wish that other people could understand that their opinion of me does not make me feel any better or worse about myself.  If I don’t feel beautiful, 50 people could say that I am and their words would ring hollow.  I care how I look to me.  I care how I feel physically.  No one else’s opinion matters to me anymore because I am confident in my opinion of myself.

in this time, however, my opinion of myself is not the best it has ever been.  It could be better.  I know that it will take serious discipline in the kitchen and at the gym and just any time I can fit in some fitness.  Every little bit adds up.  As time goes on, I see the old me coming out again.  The extra pounds this body has been carrying have been coming off and I am feeling better because I can walk up the stairs without feeling like I am dying.

If you find yourself in a similar place, talk to your doctor about your options as far as diet, exercise or a nutritionist.  It is very easy to let yourself go when you are dealing with many other issues that seem pressing or painful, but you cannot afford to ignore the co-morbidities that extra weight adds to so many conditions.

Monkey Feel Good

At this stage in my life, there are very few things I look forward to.  I love being around my family, I like things that sparkle.  Most precious to me is a day without pain.  It’s like, a white stag.  It’s the dragon I chase.  It’s the flame to my moth.  It is what I want and dream about most days.

So, when I wake up and I don’t feel pain, I wait.  (I feel like I have told this story before…)  Anywho, by the time I realize that I actually don’t have pain, I just don’t know what to do because I want to do so many things.  Catch up on housework, studying, go to the gym, visit friends, take my daughter out, oh the possibilities are endless.

In theory, these are ALL great ideas, but in practice, I can only do one or maybe two of them.  I am still going to get tired out pretty quickly.  Pushing myself to do too much is inviting a headache.  Sometimes I just sit at home and enjoy not being in pain, knowing that going out will provoke me to do too much.  I will try to catch up on some housework, and even then I have to pace myself and take breaks when needed.

I suppose what upsets me most about this is that I don’t want to be scared to enjoy my body.  It’s bad enough that each morning is like playing the lotto and hoping that I will be chosen to be functional today.  Wondering if I should push the envelope on my good days is torture.  My body finally feels nice, should I go have a good time and pay for it later or sit around and do nothing and feel good while doing it?  I guess we all have choices to make.

For the past few days, I have felt pretty good.  Pressure in my head, but no lasting pain.  So, I have spent some of that time at home protecting my fragile, good-feeling body, and some of the time I have braved shopping and errands and had to take some long naps.  I even made it to the gym which was very awesome.  This morning, I woke up and before the soreness set in, I had a good yoga session that stretched my legs and back well enough to keep the soreness and stiffness at bay.

At this point I realize everything I do right now is trial and error.  Some things work, some things don’t.  Some things get modified.  My life is moving forward.  I am no longer in shock that my life has changed.  I now see that I must go with the flow because otherwise I cannot cope.  I will be studied and looked at by doctors and together we will learn how my life will function in the future.

In a way, the veil of anxiety has fallen and it feels like I am getting ready to read a new book that I know is captivating and adventurous.  I never imagined I would have brain issues or be in this situation and now the series is getting interesting.  How will I handle this?  What will the doctors say?  How will my family take the news?  These are all things I hope to learn in the new book!

However, the release isn’t for a couple weeks or so (at the time of writing) so I am kinda on my own trying to figure out what is ok and what isn’t.  None of my doctors want to see me until I have been to the Cleveland Clinic.  Even the urgent care doctor was like, “go to Cleveland Clinic,” after I fell.  I have weeks to wait, but he just didn’t feel comfortable doing anything because my condition was “way above” his expertise.  Those were his words!  The Medical establishment is amazing and appalling at the same time.

In my own mind what makes this so bad is that I noticed immediately that I had issues going on and was told to wait because they might go away and they have just gotten worse and worse.  I know that there is an order and timeline, but I also know my body and mind.  Here I sit over two years later and both have declined and I wonder if any of this could have been prevented or am I just trying to hold on to something because it is hard to accept what is happening.

I am sure from our visits that my neurosurgeon never had this in mind prior to or directly after my surgery.  At 6 months he was concerned enough to refer me to the Cleveland Clinic, but insurance changed because I lost my job when recovery didn’t go so well.  My new PCP had never heard of Chiari and was skeptical of my symptoms, so she never really ordered anything but some bloodwork and a referral to my neurologist.

The neurologist couldn’t figure it out.  On paper and film, everything was working as it should, but obviously, I was having way too many problems for everything to be fine.  He recommended Cleveland Clinic, but the PCP would not make the referral.

After five months, I got a new PCP at a large medical group and we spent a year getting every symptom tested by a specialist, each of whom recommended the Cleveland Clinic so that when we asked for the out-of-network referral, we would have all of the medical evidence we needed.  It felt like forever and was a very difficult time in my life.  A dark time.

Still, I wouldn’t trade the lessons I learned for the world.  The most important lesson that I learned is that I don’t have control over the outside influences in my life.  I think I do, but I really don’t.  I do have control over how I express myself when I become victim to some type of misfortune in life.  I would love to say that I have learned this gracefully, but I have not.  I have been insolent, mean, arrogant, prideful, spiteful, childish, and so many other things throughout this process.  The more I was able to accept that I only can control me, the easier it was to think of things I can do that are positive and make me feel good.

Some of these things I can do even when my body doesn’t feel good, like decorating paper lunch bags for a volunteer organization.  there are times that I have to find the good feeling on the inside because my body is not giving it to me that day.  I might wake up hoping that I will feel awesome, that that is more exception that rule.  Normally, I have to push through whatever I am feeling physically if I want to be useful anywhere else.

I just hope one day, I don’t have to concern myself with that.  I will feel good every day.  I will be hoping for it to happen soon but I know it will happen eventually, this side or the other.  Until then, I will enjoy a good feeling heart!