Sunday, July 5, 2015

Open Apology to the Chiari Community

So, you honestly may not remember me.

There was a time I posted to my blog daily, even hourly.

Then.... I....stopped.

Why did I stop? What caused me to drop off the face of the planet for several months?

Whenever this thought or question came up in my mind, I blamed  it on several things: family issues, working on my new business, moving...the list goes on and on.  All of these are very valid reasons.  The family issues you wouldn't believe if I told you...I mean, it's the stuff movies are made of...and the business-- yes, it's been difficult to transition my love of helping others into a business... and moving, well, if you've ever moved, you know the drill.

However, last night, one of the worst Chiari-symptom nights I've had in quite a own truth smacked me right in the face.

SMACK!!!   "SNAP OUT OF IT!!!"  I literally yelled at myself.

The ugly truth?  I wanted to be done.  Finished with the Chiari story.  I wanted to live above it all. I wanted to keep all of my symptoms, pain,  fear to myself.  I wanted my last surgery to be my LAST surgery.

I mean really, who cares if my depth perception is almost non-existence and I can't stand driving?  Who really wants to know that my head has been hurting for about the past 10 months straight?  Why does it matter if I'm having trouble swallowing again or if bladder issues are intermittently rearing their ugly heads?   Does it really matter  if I have tremors, numb spots and am continually saying the wrong word at the wrong time to the wrong people?

Because of all of this.. Isn't it better to  turn a blind eye to it, make everyone in my world assume I'm better and just get the hell over it?

I just wanted to make it stop!

I just wanted normal stressors to be normal stressors.

In moments of weakness, I went to doctors, I had MRI's... and I never followed up on results or even sent my MRI's to the neurosurgeon that ordered them.  Worse than that...I have never even looked at them myself.

I'm a fraud, I'm a sham, I'm a fake.

I put myself out into the world to be this Chiari Crusader...and I don't even want to face my own illness anymore.

What did I do?  I hopped on a plane every chance I got to go anywhere in the world that I could find a purpose to go.  I ran.  I dug myself in to my business... noble as it may be.. I dug in to helping others manage their lives with Chiari or A-cysts, or their lives after abuse... or their  small businesses.
I really did.. I dug in and did all of these things.

I became a champion at handling my personal anxiety surrounding the trauma in our family.  You know the drill... 2 Flexeril and a Klonopin and the anxiety just melts away... Then I could get down to business.

I could work. Work, work, work.
I could write. Write, write, write.
I could ignore. Ignore, Ignore, Ignore.
I could blame. Blame. Blame. Blame.

Yes, I could do it all...No Chiari was going to rain on my parade.  No one was going to tell me to slow down.  No one else's opinion even began to matter.

All doctors are idiots and I'm going to prove it by not needing one.

Until last night,  last night it all came crashing down.  Last night, I needed a doctor.  Last night, I needed a Chiari friend, like the ones that I used to text in the middle of the night.  The ones that quit speaking to me when I started pretending I was no longer "sick".  Last night,  my world became purple again.

Last night, honestly... I was scared. 

Last night, I realized how I had abandoned the very community I set out to help.  I was so busy being annoyed that no one reached out to me in my time of need (except for know who you are)...I realized I had shut myself down.  I was NOT serving others.  I was serving my own ego, my sense of pride and wearing my badge of martyrdom as an invisible chip on my shoulder.

SO here, I apologize to you, my tribe, my Chiari sisters and brothers and I vow to stop ignoring my condition, stop ignoring the cold hard FACT that we all need each other...and to stop ignoring the Fact that no matter how much I "say it isn't so"... things in my body are just not right.  It's time to seek to another neurosurgeon, find a local neurologist and to face what's happening.  It's time to get involved again, risk caring about people again and make amends where they are due.

To my family...You are all right.  I need to slow down.  I need to be where I am and let go of the guilt and shame that surround where I am.

No, I'm not stopping my business.  On the contrary, I'm still pursuing it with all of the gusto I can muster.  As one of my mentors, Gina DeVee often says, I'm "taking a stand for the AND".   Chiari and Coach can exist in the same body.  I do not have to forsake dealing with one in order to succeed with the other.

I am giving my health it's rightful place in my life, making finding a new set of doctors a priority and making a conscious effort to reconnect with the community I do love so very much.  I am proclaiming it to you...even though you may not know me...because I believe in going back to basics, back to the core of who I am and how I got to where I am now.  At the core, we are the same. We have the same basic struggles, basic fears.  You are my tribe.  

Thank you in advance for your understanding. Please comment any thoughts or insights below...I'll be seeing you around in all of the old familiar groups and of course at  the Conquer Chiari Walk in 2015 (not sure which location just yet).

Thank you for reading this post and for your support.



  1. This comment has been removed by a blog administrator.

  2. I am now and always will be your friend. I think anyone who has a chronic hidden illness goes through bouts of "running away". It's because we are not normal and we long for the days way back when we lived a somewhat "normal life", and people didn't treat us like we were just trying to get attention or a lazy hypochondriac or a druggie. I think it is very brave of you to push yourself so hard when I know you are in pain. I for one am glad to see you writing on here again... love you Michele! Now get the help you need, and get to feeling better!

    1. Thank you Cathy.. Your unwavering support and friendship has been priceless these past several months! I cannot express what your support has meant to me. As other "friends" fell away, you remained and I love you so much for that.

  3. Michele, I know these feelings all too well. I've been dealing with chronic pain and illnesses for the last 20 years and Chiari for the last 2 years (majority of symptoms and diagnosis). I have gone through all different stages of grief, denial, avoidance, depression, obsession, etc with all of this at one point or another. I'm finally at a healthy(er) place, I believe. It's all a learning experience and we're doing the best that we can! Sometimes we need to take time off from the doctors who aren't helpful, the drama from the Internet, the responsibilities, etc. That's ok. As long as you know what it is really healthy for you. What is making you happy and healthy? That's the most important thing. We all understand that! 💜💜💜

    1. Those little question marks were supposed to be hearts!

    2. Thank you Kathryn for your comment and for your expression of understanding! I truly appreciate your comment of understanding and support! (Thanks for the little hearts!)