A Whole Life


Chiari is not my whole life

However if you knew read my blogs or followed my social media it is easy to assume that all I do is sit around having Chiari all day and writing of my sufferings.  I hope that is not the way I come across, but a lot of my life has been medically related in the past few years, so it is a big part of my life.

I am sure that I have spent time talking about some of what I do at church, but I also have other things that I enjoy that I suppose I don’t always speak about.  Even I have to remember that pulling back the veil also means exposing how I spend time enjoying myself during difficult times and what I do between flareups.

At my laziest, I am watching Gumball on Hulu.  Just over and over.  At my best I take walks around my neighborhood and take pictures of people’s flowers.  I make videos, I play ukulele, I bake cookies.  I have a range of interests that is ever expanding as I crave information and knowledge.  One I am able to master something (which is almost impossible now, but it happens) I am ready to move forward and learn something new.

I just picked up a unicorn cross stitch project.  I have avoided cross stitch and needle point my whole life, and here I am, ready to learn.  I have been considering crocheting or knitting again.  I know that my fingers aren’t as nimble as they once were, but I will use them until they don’t move.  I am thankful for every bit of strength I have left.

Sketching, drawing, and painting have always been activities that I enjoy but I am not that great at.  The funny thing is that at this point I understand it is more for my enjoyment because I am not in the business of selling paintings.  I can enjoy my ugly paintings.

I have taken to watching Marvel Comic Universe movies and reading DC comic books.  Neither have ever been interesting to me, and they still aren’t really, but it gives me something to talk to other people about, so in that sense it is worth every minute I put into it.

Writing has become a necessary part of my life, so I have begun writing a book.  Still debating on publishing the one I wrote.  I just chaired our Chiari walk and I am plotting and planning, praying to get the right people in my path.  I am ready to start taking advocacy to another level and while I know I have a few obstacles to overcome, I know this is where I am supposed to be.

I suppose thinking about it, it is hard to see how all of these things are woven into my life along with the family, church, and so many doctors.  However, I encourage you to MAKE the time to do something that you enjoy for at least 30 minutes a day.  An hour if you have access to the time.  I usually can’t focus for more than an hour or so.  If I have a headache, maybe 15 minutes.  Always keep something with you that you can do to keep you mind functional during slumps in the day.  Some days I just play with my fidget dodecahedron (yes, I am THAT girl) because it requires zero thinking.  Other days I get on my 3Ds and play video games.  I can do it for about ten minutes before I tire of that!

There are so many options, even listening to audio books and just resting.  All of these things are great for helping to get through days that aren’t the best or the worst.  I look at what I go through just trying figure out what my brain is doing and I know that other people out there are going through the same or worse with less support or resources than I have.  My mission is to figure out how to change that so that people can get through these times with hope and purpose in their lives.



It is Time Thirty ‘o’ Clock



What is time anyway?

I am pretty sure I have talked about it.  Maybe not as much on here as on my other blog, but being unable to create stable, flowing memories has a curious effect on my ability to place things in time.  I have a difficult time putting memories in order or even knowing if something was a few days, weeks, or months ago.

This is something that is lightly addressed by my doctors as I suspect there is very little they can do for me in that respect.  I am not creating mile markers in time.  I can still tell what time of year it is by the sun, but what does that even mean in the context of real life?  I have to live by a schedule that I loved at some point but now I feel like it is a burden.  What if my body does not FEEL like getting up and going to another appointment.

Doesn’t matter because I have to go anyway.  I often am waiting 2-6 months for appointments, so when they come around, I go even if I feel like death is nigh.  The rate of descent news from these visits is probably around 40% because most of my doctors are pointing their fingers at my brain and my neuros are scratching their heads because I am not a textbook case of someone who has chiari and a normal decompression, I had problems before I ever came in, I had already felt the boggy breath of the reaper as my brain exploded into my neck.  Am I rambling?  Sorry!

In the end the appointments are necessary to make sure that the doctors, my family, and I can be on the same page and collectively understand what our treatment options and expectations are.  Not having a regular schedule beyond church and doctors and naps is probably detrimental to my health.  We are working on it.  It is a little harder now that I can’t drive.  However, know that you are not the only person going through this.  If you have ha a major trauma and you can’t get it together, THIS IS YOUR GRACELAND!  I feel you.  I too am tired.  I too had med-head.  I too need to take 2, sometimes 3 naps a day.

If you can’t figure out why it is so hard to get it together, I can be the first to introduce you to brain injury,  Either by book or by force.  No one, not even these prominent doctors can truly understand how the brain and mind function, however they seem to be able to spot when it is not functioning well. You may think many people fake their symptoms, but you’d be surprised at the number of improperly treated brain injuries.  (This can either be from patient refusal or from under trained doctor who cannot spot the signs of abnormal cognitive behaviour and speech and they just give them a mental health stamp and never look at the brain as the cause).

That’s not true! You yell at me!?  I kept going back to the doctor for 8 months telling them something was wrong, and they told me I was depressed and sent me to a psychologist.  I went to that psychologist for SIX WEEKS trying to figure out the root of my hypochondria before I was told my cerebellar tonsils had herniated out of my head and into my neck and I needed immediate surgery based on my symptoms,,,you know, the ones the other doctors told me were in my head.  Technically they were, just they were now starting to fall out!

Especially in out intelligence we must consider how to humbly deal with the unknown.  The last three years of my life have remained largely unknown to me.  My doctor says that it won’t come back.  It is lost forever.  The people I have met, the things I have done, washed away as I open my eyes from sleep.  waking up every day, checking my phone to see the day and month.  My life is like a mouse treadmill right now.  It isn’t really going anywhere and the scenery doesn’t change.  I hope that this part of my life gets more interesting, sooner.

I Am No Hero!!



I am no Hero!

Going through the medical dog and pony show has been quite the eyeopener for me.  I now understand things about people in pain that I never even considered.  I also now feel the inconsiderate thoughts and words of others and it can be very alienating.  Some people are mean because they think it is funny, some because they don’t know better.  Some treat me with kid gloves or like I have become a fragile relic, some artifact that reminds people of who I used to be.

Then there are the people who feel like I have overcome some supernatural enemy and I stand in bloody victory waving my banner.  They weave a narrative about how horrible everything became then how it was miraculously transformed and I have earned some type of sainthood for enduring life.  And while I imagine is is great to bask in that feeling, I do not wish to be stuck in my own puffed up head as if I had much to do with surviving my ordeal.

I am no hero.  When they told me that I had to have brain surgery, I sat in the parking lot and wailed as if someone had died.  I called my mom and was in such a worked up state that she had to calm me down before I shouted that I had to have brain surgery.  I hear my daughter gasp.  Mom’s phone was on speaker because she was driving.  My daughter, who was on her way to a performance, had heard me lose my marbles on the phone.  I went to my sister’s house and cried for three days.  Sometimes she sat and cried with me.  Other times, she let me cry in solitude.

Hard to imagine Batman ignoring everything (even my own child) because he was told his brain slipped out of his head and was drooping into his neck.  He has his own source of pain though.  I suppose this is where we differ.  He has turned his pain into a mission and proactively fights crime.  I am good to be making it to my doctor appointments.  While I do some volunteer and advocacy work, I am not fighting for anyone else right now, I am fighting for me.  So that I can have the ability to speak out for other people who don’t have a voice.

Just imagine how awkward it is for someone to tell you that you are brave for living or a hero for living or an amazing person for living.  I feel like that takes away from people who are actually heros.  A firefighter puts his or her life on the line daily to save others from dangerous situations.  THAT is a hero.  Police deal with all sorts of insanity, knowing every day that they leave their house might be their last.  THAT is a hero.  Our service men and women willingly go out onto battlefields and too often come home changed physically, mentally, or emotionally.  THAT IS A HERO.

My neurosurgeon spent 6-8 hours operating on my brain with the full understanding that my entire life was in the care of his highly skilled hands.  HE IS MY HERO!  He got me out of there alive.

Still, I am no hero.  I feel that we shouldn’t use that word so lightly.  If put in my situation, most people would do pretty close to what I have done.  Deal with it day by day.  Try to enjoy the good times. Complain about the bad times.  Really, it is a dull existence that pushes me to want to become a hero of sorts.  I spend a lot of time with doctors, on the phone with insurance and doctors, and scheduling future appointments with doctors.  Not nearly as heroic as it sounds.

Don’t let that fool you though.

I plan to be a hero one day and use my abilities to assist my community.  Then I can accept being called a hero.  Living in pain is a life that many people have and they make it through.  They go through the same things I do, at times more and they aren’t being called heros.  They are often forgotten about.  Some are considered a burden and are made to feel ashamed about their condition.  I just happen to look “normal” and seem “normal” to many people and so I must have overcome some giant hurdle and I am now an inspiration.  I wonder if I am as inspiring when I haven’t taken a shower for two days and my hair looks like a rat’s nest and all I want is coffee and cartoons because my head is killing me.  Am I an inspiration when my attitude is like a fiery cyclone leaving only destruction in my wake?

No.  No I am not.

I do not wish to be.  I want to be Michelle.  A mom.  A minister.  A witty woman.  All of this other stuff that is going on is just me doing the things that I have to do to keep going.  I am not sure how to just give up and that is NOT heroism, it is simple perseverance.  I have to keep going so my daughter has me here to help guide her through life as well as I can.  That is the SAME THING that every mother does no matter her situation.  Sometimes I don’t do as well or go as fast as other parents, but many parents are perfectly healthy and slow.

Life would be easier if we recognized that it is not brave or heroic for going through a medical procedure, it is simply a part of some of our lives.  I would like to feel welcome and loved instead of having to live up to the standard of a hero.  That is too much burden to bear.  I am human and I fail.  I have moments where my faith is wearing thin.  The best are the moments when I can’t control what is coming out of my mouth and I would be considered ANYTHING but a hero.

So, before we celebrate victories we can’t comprehend, let us just treat each other well and be there in the victories and the losses.  Be there when the test results come back and aren’t good or be there in the middle of the night when there a tears of pain overflowing.  You will find a fragile human with issues that is not wearing a cape, but is wrapped in a blanket to help feel comfy.  There will be no soaring through the air, only splayed out on the sofa or bad, trying to stay in a position that feels OK!

While the sentiment is lovely, save it for the people who deserve and earn that title.  I am a fighter who is training to be a hero someday.

Dancing Brain


Hi! I’m Brain! I am showing Michelle my new dance move: Electric Boogaloo! Also, dancing makes me tired, so we gonna sleep 16 Hrs. XOXO Brain

Just when we thought we were getting closer to the answer, WE WERE!!  Turns out, that answer was a little scarier than we thought it would be.  When your doctor says “seizure” you always hope it is in any sense but about your health.  But, life, right?

I remember walking out of the office thinking that while that explains so much, it can’t be true…right?  That was a Monday or Tuesday.  Thursday my stepdad watched me have a clonic seizure.  Friday, I went to urgent care because I pulled several back muscles and so I went home to relax and I had one in the pool.  It was too late to call my neurologist.

I visited a new friend who was passing through Las Vegas and drove home the longest way so that I could see all of the beautiful mountains and the city from the driver’s seat one last time.  I knew I had to call and let them know what was going on, and I knew that they would suspend my driving privilege.  When I got home, I called.  I sank as they took driving, swimming, cooking without supervision, showering in the house alone, going on walks alone, and anything too stressful as that could trigger symptoms.  Basically, I was reduced to a ten year old.

The scary part is never knowing, as many seem to happen at night, then I am tired and groggy and feel like I have been beaten.  Two months of tests, imaging, and waiting have halfway passed and I am getting closer and I think that we might actually get an answer.  I also understand that medicine is not an exact science and they are just as likely to be as lost as I am.  I want so badly to have an answer.  Even if the answer is that nothing can be done.

For now, I am settling into a life that I feel is very constraining and I wish I could just skip this whole part.  I hope that I can remain strong enough to make it through this process.  It is horrible knowing that there are so many other people going through the same things as I am, but if my struggle can make a difference one day, then I am more than willing to keep plodding along.

It must be very easy for people to see me and think that my life is peachy.  I bet if they read this and my other blog, they would see me from a whole other point of view.  They would know that I am just a human who is scared of life right now and really needs to be understood.  That is life, though.  We have to continue on, even when the journey is awful.  Especially when the journey is awful.  At least I do.  For a little while longer, at least.

Summer Melting



Las Vegas Summer!  I am melting


Living in the desert has some very distinct disadvantages for me right now.  I have lived out here (for the most part) since 1996 and coming from New Jersey, I love the winters here.  The summer was always awesome too, until I had the brain surgery.  I had the surgery in December and I remember going outside in the mornings and being warm while my sister was bundled up.  After a short walk around the courtyard pushing the walker, I would come back inside and have to take off all excess clothing.  She told me I kept it freezing in the room.

I don’t remember much of any of the previous summers, but TODAY was hot enough to melt my thoughts (around 115).  I rapidly lose energy and focus in the heat so I tend to plan my events so the I am not outside for a long time.  I have to have air conditioning in a vehicle or a building.  I can overheat from doing my hair.  Or getting dressed.  It feels like such a horrible weakness to have in the desert.

I try to remember that I am blessed to have refuge that not only has AC but also cable, food, and a pool.  It is easy to focus on what I have lost: I have the lost the ability to endure extreme heat.  As I learn my life lessons, the positive things that have remained or increased have begun to outweigh the negative things.  In reality not much has changed except my perspective.  Turns out that was the most important change that could be made.

Still, at times I find myself in the broiler that is outside and I am amazed that the human body can withstand such brutal temperatures.  People have lived in the desert for many years in all kinds of deserts.  I am so thankful that I had the opportunity to endure the heat and work in it, and hike in it, and all other manner or activities I did.  I enjoyed those times so much and I had an awesome tan!  Now, I am thankful that my life affords me so much air conditioning, cold water, and frozen treats.  I have what I need and in this world that is a miracle.

If you find yourself in a situation that is not awesome, take the time to consider the good things.  Now, this is not what you should do if the situation is dangerous or abusive, but if you are just in a funk about life or a thing, take time to consider the things that you have that seem inconsequential but make life so much more convenient and comfortable.  If this exercise doesn’t even come close to touching your issue, I recommend talking to someone (from a trusted friend to a therapist) who can help you get the assistance you need to live a happier life.

Should you see or talk to someone who is in a terrible funk about something, let them vent and blow off steam.  Many times people just need to direct their excess energy outward and then once they let everything out they can think a little more rationally.  Never undervalue someone’s feelings or their current reality.  Each of us has a unique life experience and each person has something that they struggle with.  Some people have multiple things.  Lending a caring ear and validating that the person has a complaint (even if you don’t agree) allows a person to feel heard.  I often spot my own flaws in thinking when I vent.  Hearing my thoughts out loud helps me to make sense of my feelings.

I wish more people could understand that my body does not tolerate heat well.  I don’t want to be the only person sitting inside at gatherings.  I don’t want to be the one who avoids get-togethers because they are outdoors and I can’t do over 75 degrees.  I hate that temperature is something that influences everything from household comfort to vacation destinations.  I am not trying to be the center of attention or bail out on my friends.  I know I LOOK fine, but I am not OK.  I have symptoms that control most of my life, from walking to the going to the restroom.  Life for me is a little crazy.  So, if I am going to take the time to get ready to go out with friends, it is because I have been guaranteed a nice cool place to rest.

When Someone Listens…And Acts


Finally, someone who gets it!!

The past two and a half years have been crazy and I often feel like I am living in a nightmare.  It’s horrible to be so “normal” that doctors can’t see that something is going on and how deeply it affects me.  Thank God I make it to therapy every week or else I would have lost all my marbles by now.

I had a meeting with my caseworker at the brain center and for once I was listened to and not argued with or questioned.  I was allowed to tell my side of my journey and express what I hope to accomplish as a patient and with confidence I was told that everything would be handled for me.  I no longer have to make phone calls, he actually left the room and checked on each of my referrals and got updates on all of them for me.

He even told me that there are programs to help people with brain injuries and that he will get me set up to be tested to see how they can help me get closer to the “normal” I so desire!  He has been the more hopeful sounding person on my journey and I am so thankful that he’ll be working with me through my treatment.

I just want to tell everyone that I am finally being helped.  I have someone’s ear who wants to see me get better.  I am a challenge but I am worth the work.  If I could shout it from the rooftops I would.  As I get my help, my next goal is to make this help more widely available to others who have given up hope.  I refuse to suffer in vain and if I make it to recovery I want to bring as many people with me as I can.

Pain Bomb



I have been waiting for you to have a good day! (Pain Bomb)

Recently I have had the joyous occasion to have several days on little to no headache.  I still have the nausea and pressure in my head, ringing in my ears, but that weighty headache let up.  I simply can’t help but think that my brain is plotting its revenge on my for not entertaining the normal amount of pain.  For me it has been nice to go to church and not fake smile (much) and enjoy a day of pedicures and shopping, even dress up to go to therapy.  It hasn’t even really mattered that other things hurt, the headache subsided.

Sure as the sun will rise, I will get another headache.  Probably sooner than later, but hopefully later because life is pretty nice without that burden.  Now, I know this probably sounds kinda wild coming from a Christian as I should probably be believing that God is going to miraculously heal me.  If course I believe He can.  Still, if I am more valuable to the world in this state of being, then I will use it to spread awareness and help other people.

I suppose my point is that anyone can be afflicted and we shouldn’t use religion to brush away common sense or medical treatments.  We are each free to make our decisions, but we have no right to dangle carrots in the faces of suffering people.  Religion is not a baton to beat someone who is down.  The ultimate goal should be to love and encourage one another.  Most importantly, to listen to one another so we can now what they are feeling.

I know when I am feeling a headache coming on.  No one has the right to question that, or my faith, or anything.  I have spoken to so many people who have walked away from church or organizations because they were not heard.  People spread their own ideas of how you can be healed or what you are doing wrong and it feels terrible to be seen as someone who isn’t even helping herself.  I hate it.  I know other people endure it and probably hate it too.  Just know, it is ok to educate people and to walk away if they choose not to learn.  It is ok to stop someone mid-sentence and let them know they are too far across a line already.  It is ok to stand up for yourself and straight out tell people exactly where they are messing up.  You are not inferior to anyone, so you are not required to stay and listen to nonsense.

You know your body, and if it is showing signs of being overworked or tired, listen to it, not to people.  These are the same people who will complain about their own back when you ask them for piggy-back rides because you are tired or in pain. They want the best for you but they don’t know so just shut them down and tune them out.  It’s healthy and they can maybe learn about you with the added bonus of being quiet.

If you are the one scratching you head and mumbling about how you are just trying to be helpful, just relax.  The most helpful thing you can do is let your friend who is hurting talk and don’t act like you know more about their condition than they do.  Be a friend, not a doctor.  We know your intentions are good, but your degree in anything but neurology disqualifies you from giving cound medical advice to someone who has had brain surgery.

I know it seems harsh, but the reality is, being up front with someone in the beginning is easier than trying to fix it later.  If you have a worthy relationship, this will not harm it, but it will make it better because you will understand each other more.  We should grow in our relationships, and that can hurt, but it is worth it!!

All this being said, I feel the telltale heaviness inside of my head that precedes a headache.  I expect I will wake up with one but I hope that is not the case.  If it is though, I have had an awesome few days and I can live with that.