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.


Not So Helpful After All


Your chakras are blocked. You need to meditate and focus the energy of the universe on your blocked areas so you can open the path of energy flow. Once energy is no longer pinned in you head, the headaches will disappear. **Okay**

There is nothing like the unsolicited advice of someone you barely know.  You desperately want them to go away, but in kindness you listen to them.  They often tell you something that will make you question whatever type of relationship you have with them.  You hate to see yourself as mean, but you secretly wonder why they haven’t transcended this corporeal existence for the more ethereal experience of knowing it all somewhere else.

This is me having one of too many conversations about how I can help what ails me.  I know people are trying to be nice, but they forget that I have probably done more research on Chiari Malformation than they have since college.  I have a team of neurologists who likely know more about my condition than anyone who has recommended that I ferment and then drink something.

I know people are just trying to be helpful, but you really are no help when a subject is beyond your understanding.  So maybe research Chiari and ask me some questions instead of telling me what you think is best for me based on your aunt’s seasonal sinus headaches.  All headaches are not the same.  They hurt differently, are brought about by different circumstances, and are treated (or not) in various ways.  They are all valid sources of pain, but each deserves its own light.

If you have found yourself giving advice to people for a problem that you don’t have or don’t have a degree in, you might make sure you know what you are talking about.  You might instead have a relative with Chiari that you have cared for.  Then I can relate.  Just, be mindful that the person you are talking to likely knows WAY more about their condition and comorbidities than you do.

If you have found yourself on the listening side of someone who knows more words than facts, don’t be afraid to stand up for yourself.  Just stop them at the beginning and don’t even listen to them pontificate about subjects beyond their grasp.  Your time is better spent educating that person instead!  Give them a bit of knowledge and hopefully they will be curious enough to look it up later.

I spent maybe the first year after my surgery (and a bit before) listening to people tell me what they thought I should do.  Essential oils instead of brain surgery.  Someone told me this was a better idea but then refused to take care of my medical bills if the oils failed.  Someone asked if I had tried (you knew it was coming) KALE!  In fact, more than one person has asked about it and that is why it upsets me.  Just because it is healthy doesn’t mean it will keep my brain in my skull.

Eventually, I just stopped someone when they asked if I had tried kombucha.  I guess that is where I drew my line.  I told them that I allow my doctors to lay out my medical choices and I do my own research.  They seemed a bit put off, but I felt good for speaking my mind and not listening to a holistic rambler talking about nothing useful.

Now, that is not to say there aren’t people who know what they are doing or talking about.  These people tend to make sense understand how the human body works.  I am not talking about these people.

It’s the meddlers.  The ones who can’t pronounce your illness but can tell you how it was created in a lab and they know the secret cure.  The cure that cures everything.  Probably something that will drive you up the wall like “kale”.

Just know that you aren’t alone out there, suffering from the fantasy based words of a do-gooder.  I know that many people deal with this everyday, so lets start to use the opportunity to educate instead of rolling our eyes until they get stuck or sighing heavily until we hyperventilate.   Many conditions can be explained to the general public in the time it takes for someone to explain how misaligned chakras cause headache and indigestion.  It’s a better use of time and oxygen and you have now spread awareness!

Stage 5: Loss Of Self and Confusion



All of those things I was depressed about and had anxieties over?  They have manifested into many questions about how I will define myself in the future.  With the bitter portion mostly cleaned out I am left with pieces of myself that don’t seem to be who I was.

I picture it like broken glass that spent time being smoothed by sand and time.  So many abrasive feelings had to come out and the changed the pieces of me that were left.  Time has left the glass warped and changed.  None of the pieces fit back together like I remember.  I often feel like I am living in someone else’s body.  Really, I have to internalize the idea that I am free to choose who and what I want to be within my limits.  However, I have to stop being scared to be something.

I am afraid of being broken again.  I have put myself back together so many times, but this has been the hardest journey of my life.  This is the one that seriously made me question the value of living in pain.  I still struggle with that question when the pain is very bad.  At that moment, I am a person who likely can’t even feed herself.  Is this who I will be?

I struggle with wondering what I will be able to do to earn an income or if the issues I have render me disabled, what will I do with myself?  Right now these are possibilities of who I may become.  That’s scary stuff.  I have always acted and done things KNOWING who I was.  I am not the same lady from a few years ago.  I have lost some physical ability and sometimes my brain goes on the fritz, but I have gained wisdom and patience so I don’t even approach things the same way.  So does that make me untrue to myself?  Why do I hold such allegiance to my former self?

She commanded power and respect.  She was not meek and kind.  Not really forgiving or tactful.  I don’t feel strong life that anymore.  I don’t feel like a fearsome woman with laser focus on what I want.  I just want everyone to love each other and be nice and thoughtful and respect my personal space.  Who am I?

I am underdeveloped right now.  My whole life has been altered and I am being created with my new life.  Piece by piece, day by day, trial by trial.

What keeps me so hopeful is that the change is taking place.  It is a long process, but I am moving forward and I am sure after I work out some more anxieties and other issues, I will be able to see who and what I am being crafted into and what my purpose is.

Should you find yourself on this stage, nothing will feel familiar. You might have to improvise a dance, but you may learn that you had a skill you were unaware of.  This stage is frightening and the house is empty except for the shadow of your former self peering at you from off-stage.  I just tell myself, I can’t dance like you (old me) anymore, I have a new dance, and that’s ok!

This stage can be scary but it opens you up to lay the groundwork for healthy recovery or living.  You deserve to ask yourself the questions and you can try to figure it out yourself or seek professional help for dealing with this confusing stage.  You will strip your emotions and idea of self to the core and from here you will spin onto the the next stage in this progression.

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!!