The Solution

One of my issues in life is not feeling like I am able to do enough stuff.  I enjoy filling my life up with things to accomplish.  So, I recently had a conversation with a friend that I know speaks from the brain.  I am not saying he doesn’t have a heart, but he does not let his emotions cloud his sound judgment.  I went to him with my feelings, knowing he would give me back factual information and cut through the ambiguity of my emotions.  while he said many encouraging things, the craziest one was to get a part-time job.  My medical team and my lawyers would kill me.  My body would give out.  I don’t expect him to know all of the details concerning my condition, however it got the wheels turning, and THAT is what I needed from him.  I am a woman of many talents and while many of my body parts are failing me right now, I have not given up the hope of going back to living a semi-normal life.

That takes money.  While I languish, waiting for disability, I feel very useless.  So, in his eyes, getting a job will fix some of those problems.  Still, I can’t work by someone else’s hours or by their expectations of my body.

Then it dawned on me.  I have been a business owner since 2010.  I ended up having to get surgery on my nose and throat shortly thereafter and then the accident and the brain surgery, but I don’t need to get a job. I’m a freaking BOSS!  Hahahaha.

He told me to figure out what I was still good at, I bet I can still do loom work and I would love to design a set of handbags.  So, sometimes, you have to go to someone who sounds like they are being harsh (he never used a harsh or condescending tone, he is always very matter-of-fact and pleasant in delivery) to force you to take that really hard look at yourself and say what have I been missing?  This person said this, this person said this, and how do I out it all back together?  Well, I put it back together and now I am getting ready to reopen the creative doors of Haus Of Simeon and I am going to not get a job, I am going to create the job.

Have faith in yourselves, my lovelies!!

Also, check out The Life Of A Music Monkey because I am up to some fun stuff over there talkin bout Chiari and right now anxiety and how I am working through some of my scariest moments of anxiety.


You’re Not A Doctor…



You’re all not doctors!

One of the areas in my life where I am quickly gaining knowledge is compassion.  I was JUST beginning to think that I had a handle on it, but the further I get from surgery and the more normal (whatEVER that is) I “look”, the more I see where we fail each other.

Just because I look fine and I have not lost my intelligence or my moderate knowledge of things and stuff, people think I am doing great.  Of course I can have a conversation with you about how a combustion engine works and ways to make it most effective with the least waste of energy, but I open the spice cabinet almost every times I head my coffee up in the microwave.  Every single time I wonder where my coffee is.  Then I remember, I am not heating it up with spices, I am increasing the temperature.  Try the microwave.  There it is.  Or the day I was getting ready to go out and wondering why my boot felt so weird.  My daughter brought me my boot and removed the glove from my foot.  I laugh a lot at these events with my family because we are all scared of what they mean, and we don’t want to give up hope.

Yet people hear my witty banter and think I have no problems.  So if I don’t look well, they ask, and I’ll tell you if I feel like vomiting, or my stomach hurts, or my head feels like it is in the process of a slow motion explosion.  Then people advise me on what they think the best remedy is.  You know my favorite is Kale.  Apple cider vinegar mixed with water twice a day.  Just give it all up to the Lord because by his stripes you are healed. (I hope my fellow church-folk didn’t think they would get away.  Y’all the worst sometimes.)  All of these answers I get without just a listening ear.  Now, I just tell people I’m alive and go one about my business if I don’t avoid them altogether.

None of my doctors will see me right now, so maybe it’s a good thing that I am running into all of these people who know everything.  We are waiting for the Cleveland Clinic visit because no one can fathom what is happening to my brain.

I know this though, you probably aren’t a doctor.  More importantly, even if you are, people need comfort and validation during difficult periods in their lives.  Stop giving so much advice and give some compassions, concern, love, attention, and care.  It will help the people who need it so much more.

Also, check out The Life Of A Music Monkey to read about the highs and lows of my errday Chiari!

Hi There!!


“EttpzO1iGs0w” Hi!  My name is Michelle.  I have Chiari Malformation and I had decompression surgery.  If you have never heard of Chiari, that is understandable as most people have not.  It happens in about 1 out of 1000 births but it is not always symptomatic.  So, when I tell someone about it I tend to have an interesting conversation.  I decided to start making little comics about these conversations and I hope that it will help people to understand what they sound like from my point of view.  More than that though, I hope to give you a  glimpse into the life of someone who has a hidden illness and is just trying to figure out life.  Stick figure Michelle and Chiari brain will help me tell my tales.  I will introduce them now and stay tuned for Saturday, July 23 when they begin their journey.



Chiari Defense System


Chiari defense system

For more than two years I have felt the unrelenting pain of my head and had to deal with my slowly deteriorating body.  All this while apparently looking “normal” on the outside and boy has that really shown me the true colors of the people around me.  Many have rallied to my side, not really understanding what I am going through, but understanding that no one subjects themself to brain surgery because they are a hypochondriac or because (really) a doctor didn’t feel it was the best procedure to save their life or their body from further damage.

I have a “friend” who does not apparently understand the grapevine theory and she feels that since I can post on Facebook and Instagram and I am not (always) bedridden that I am just faking it. I don’t even have the energy to hash this out with her.  After knowing her for sixteen years, and the type of person she is, and the things she has said about other people, this is just the kind of thing she would say.  I am not messed up about it.  we were never that close anyway.  I just put up a brick and block her out, like I do with doctors that don’t listen, church-folk who recommend kale, strangers who look at me crazy when I wander the grocery store and anyone else who is just a distraction.

The people eventually get easier and easier to block out.  Stop answering the calls or texts. go to a different church service, move if possible, change that phone number, get transferred at work.  I know how to avoid people.  If forced to, I will use the strongest tool in my arsenal; ignore you to your face as you speak to me in a room of people and just keep walking.  I just made you disappear before my very own eyes!  Like magic!  Although, I prefer to not have to do any of that.  I just want to be treated with dignity.

As you can tell from the picture, no matter how tall the wall is, I am always under this emotional attack.  Depression made it in.  It’s in the ground and boy has it done some damage.  It, along with hopelessness in my leg, are robbing me of being able to see any kind of positive future.  At least not here on Earth.  I am bombarded by the assumptions of those who have little to no knowledge in the field of neurology or neuropsychology, figuring that hot onions cured their headaches so they must be the Balm of Gilead and that is what I need.  Well, that and kale, of course.

Everyday I am attacked by an invisible enemy that causes pain mostly in my head but can make anything in my body hurt, or everything.  When I wake up in the mornings, I wait before I do anything.  I could have spent the night brewing a nasty headache and sometimes it takes a couple of minutes to knock the wind out of me.  I anticipate pain in the morning and become suspicious when it isn’t there.  I cautiously enjoy the day, but I spend each hour wondering when the headache will return.  It doesn’t go away for very long.

When it finally makes its reappearance, I fear how bad it will get, how long it will stay at a high intensity.  If I will have to go to the ER. If I am going to miss an engagement.  If I am going to disappoint my daughter.  If I am going to be “the flake” again.  Really, I find it to be a wonder that I don’t have heart trouble as I live in a emergency-prep mode all of the time.

Last, there is a loneliness that comes with chronic illness.  Yes, my family is the best family I could ask for. I have friends that are wonderful, kind, loving, understanding (many are in the medical field), and compassionate.  Yet, none of them know what it is really like inside.  Where I have no real memories after 2015, where I can barely read sheet music, where I pace the creaking floors of my mind wondering how I am going to care for my daughter? How am I going to care for myself? Where the accomplishments of my life gather dust and lose importance as I no longer strive to be the best, I now struggle to exist and just be.  It is a loneliness that impresses its signature on your soul and you can always feel when that same mark is upon someone close to you.

We are all warriors, fighting the battles we have been assigned in life.  We can’t really judge whose is worse, better, shorter, or longer, because it doesn’t matter.  We need to remember to fight for each other, not against each other.  Don’t force people to put up their walls because then no one may be able to help them some day.  Have some compassion.

Survival Mode


Not seeing much there…

In therapy this week, my doctor asked what my hopes and dreams were or my future ambitions.  I must admit, I was not prepared to answer such a question.  Hopes?  Dreams?  They died when my brother was murdered.  I laid them to rest and I don’t even visit their gravesites.

Ambition was always flexible.  I could work toward any goal as long as I was able to plan for it and stay on top of it.  Ambition has been in a vegetative state for two years.  It isn’t quite dead, but it’s hooked up to a lot of machines to keep it “alive”.

Now is about survival.  What do I have to do to make it through the next 12 hours? My phone will let me know when it is time for medicine, when to reorder an Rx, when to write in my journal, when to log my headaches, when to go to the doctor, where I parked the car, how to get from here to there, what my calories and nutrients for a day should be, when I have been sitting for too long, when to practice Italian.  The list goes on and on and on.  Basically, my phone told me to sit down and write this post.  It was time.

When life starts being that constrictive, it is hard to plan outside of that especially when you throw in the uncertainty of not knowing how you will feel any given day and for how long or will this time end up back at the hospital.

When I look at my future, I see a cloudy mass, dark with uncertainty.  Will I be able to go back to normal?  Will I degenerate? Will my memory come back?  Will I be able to work again?  Will I be able to afford a car someday?  My own house?  Nothing.  Out of a 15 specialist medical team, all of them are pointing to my brain as the culprit.  So, next I go to the Cleveland Clinic Lou Ruvo Center for Brain Health and pray that they can offer me a diagnosis so at least I know what I am up against.

So, I told her, I don’t see anything.  I don’t hope for anything anymore.  I just live to survive.  Maybe one day that will change and I will be able to enjoy the wold I live in and again dream of things and have hopes.  For now, I just have to take care of today, and that is ok.

One day at a time.


Enrich your life with The Life Of A Music Monkey

What is Beauty?


15 minute face mask, rise above the crap.

My life is a stressful place to be and so I try to take time multiple times a week to give myself a facemask.  It’s funny because the mask does all these wonderful things for my skin and it makes my skin feel sooooo luxurious, but it doesn’t really make me feel beautiful. Even with a headache I am choosing to take time to step away from all of the things that I spend my energy worrying about and I am going to focus that energy on myself.

When I give myself a footbath, I don’t take a book and I often don’t use my phone.  I just sit where I can look outside at the trees and sky and think about things that don’t even matter.  Things I wouldn’t normally take the time to consider.  Yes, my feel look and feel wonderful after a good soak and scrub and especially after I finish the pedicure.  That is the best part.  The beauty isn’t in my feet, they will get janky again, I promise you that.  The loveliness is in the time that I spend caring for myself.

I have questioned beauty a lot lately, I don’t feel beautiful unless I am completing the acts that we normally associate the outcome of beauty with.  It isn’t the make up, it is focusing that hard on my face for so long, it isn’t the nail polish, it is putting that care and effort into making them individual.

When I had a job and the funds, I felt beautiful leaving the nail salon or showing off that new haircut.  Now, I love painting my own nails and I have cut and dyed my own hair for 26 years.  It’s much more fun chopping it off now than showing it off the next day.

Maybe I have had beauty wrong my whole life.  Maybe beauty is the act and not the result.

Me and My Anxiety

Anxiety is a world that I don’t think one can really appreciate without having traveled there in person.  I don’t even think that every who who experiences anxiety experiences it the same way.  For me, the voice in my head is louder and makes much more sense than the voices around me.  It reminds me of every failure, every worry, every fear, and anything else that could possibly go wrong in my life.  It is often the blinders that keep me on the path to mediocrity and the bit I chomp at when I am frustrated with myself for being my own beast of burden.

The upside?  It doesn’t have to last forever!!  With the right support system and some (a lot in my case) of therapy, you can begin to talk down the harmful voice in your head that is locking you inside of yourself.  For me, the most important thing I have done to help myself is to alert my family and let them know when  I am feeling anxious so they can monitor the things I say and help talk me down off of mental ledges.  I used to be ashamed to admit that I had these feelings, but my family doesn’t judge me and they genuinely want to help me get to a place where I can be free to enjoy my life without the shadows of my mind clouding my thoughts.

Check out The Life Of A Music Monkey for more fun readin’ about my life with Chiari Malformation!!

Pick A Problem!


Who has it better?

There are times when we compare ourselves to other people, but we really only see what other’s allow us to see. Behind closed doors there are often tears, pain, misery, sadness, loneliness, dysfunction, and a host of other issues. My official list of symptoms is 27 complaints long and it has just embarrassing stuff on there. Things I don’t even share on The Life Of A Music Monkey and if you have been there you know I share some very intimate details of my life. Yet even I am guilty of looking at someone and wishing I “only” had their problem instead of “all” mine. Like I don’t know that we all have our battles to fight. As if I ONLY have one symptom. It is that piece of me that kinda hopes that other person isn’t doing as bad as I am…and so I want to be doing as well as I imagine they are. The mind is a crazy place to be sometimes, bit even I come back to the reality that we all have our low points and when my pain is at it’s worst, I wish the most to be someone, anyone else who isn’t in my pain. Still, I bet I would be surprised if I ended up in someone else’s skin and had to deal with their problems be it health, financial, emotional, or otherwise. I have enough problems to worry about. I think that I can just be myself and that is OK even if it sucks sometimes because of pain. I could be lonely or mistreated, so I am really blessed.

My Little Pony



The Post-Decompression Ponytail

Prior to my surgery I cut my hair shorter than normal.  This is a normal high-stress response for me.  The patch of hair they shaved out of the back of my head was huge and it took 8 weeks for the wound to close.  This meant no getting my hair wet for two months.  By the time I got the OK, my head was disgusting.  we tried to keep it combed out but it was just gross from not being properly cleaned.  I shaved off all of my remaining hair and my stepdad cleaned up the areas I had missed.  I had never felt so naked and exposed to the world and with a giant scar!  I often wore a headscarf (which drew a lot of looks from people, like, why is that a problem?!) and I bought a wig and got it cut and dyed to match my hair before the diagnosis.  Now, two years later, my hair is actually blue again (it wasn’t for maybe a year) and it is long enough to put into a reasonably-sized ponytail and that just brightens my day!  Even my friends have commented on my long-lost pony reemerging after spending so long on hiatus.  It’s just nice to feel like my old self in some way.

Check out The Life Of A Music Monkey, a journey into behind the closed doors of Chiari Malformation and my life.