Stage 7: Acceptance

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WE MADE IT!  At least in blog form (right??)!

This is the last step in all kinds of grief (to the best of my knowledge at the time of writing this) and in my *PERSONAL* opinion it can be the most difficult.  See, I am not really at this step yet with what I am going through.  Maybe some things I have come to accept, but as a whole, nope.

So how do I know how hard it can be?  My brother was murdered when I was 18, I was stuck in my grief for about 15 years.  I got through all of the rest of it, but I had to be able to accept a few facts before I could move forward emotionally:

  • My brother was murdered 2 days before my birthday in an extremely violent manner.
  • There was nothing I could have done to prevent it or save him.
  • I can not bring him back.
  • I can not turn back time.
  • The future we planned will NEVER come to pass.
  • I did not die that day, it just felt that way.

That is only six things.  I lost myself for a long time trying to wrap my head around those six things.  That is a long time for six things.

With medical issues, I expect it to take time to come to acceptance of all that has gone on and may never end.  It isn’t as final as death.  It can be a lifetime of being in multiple stages of mourning my losses, however, the goal is to spend just as much time celebrating the wins.  The positive attitude is what is going to keep me getting through each day until I can accept all that my body has to offer, good or bad.

If you have been blessed to make it to this stage you deserve a standing ovation.  I can’t imagine what you have gone through to get here, but I do hope that you spread encouragement to those who are in earlier stages of grief and can’t seem to move forward.  We look to you as a beacon of hope to us all; that we can learn to accept everything that has happened to us and live a quality life without dragging the weight of loss around.

 

I just want to thank everyone who read all of these posts, or even just this one.  My goal is to spread awareness about Chiari Malformation and whatever else I can help be noticed for the community of people who aren’t “normal” in the brain, body, or both.  We may look nice and act proper, but we often suffer behind closed doors or even in public when someone must make a comment about “how” we are.  We are people with feelings, family, friends, bills, pain, love, humor, thoughts, ideas, opinions, style, and so much more.  Some of us have to figure out all of that all over again, but we appreciate the people out there cheering us on and encouraging us to do more than we ever thought possible.

Again, the article I got this from is here and I used it as a basis for my drawings and for this idea in general.  Let’s talk about out mental health so we can be healthy.  Grief is healthy when completed and not stalled.  If you are having trouble with loss, talk to your PCP or therapist, or someone in your support system.  There are a lot of ways that help can be accessed and we need to use the avenues that have been opened to us so we can help ourselves and the future generations.  No Shame!

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Never Trust The Pompadour!

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Never trust a brain with a pompadour.

I tend to think of myself as diplomatic when given the opportunity.  I want us all to end up happy while I get the best deal.  Sometimes it works out, sometimes it doesn’t, but it NEVER works out when I try it with my brain.

I try to convince my brain that things don’t have to be this way.  We can be friends like we used to be.  No matter, my brain simply thinks everything is funny, gives me a bomb and waits for the explosion.  I’m trying to be serious at church, drive by head bombing.

Trying to check the mail, bomb dropped from up above, crippling headache ensues.  Bend over too fast to tie that shoe?  Hit your head on a bomb!!

I want to trust my brain.  He is so intelligent and creative, but wow, what a jerk!

Out There…

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Out there…

I enjoy blogging and especially this comic because it is just a fun expression of my life.  So, I like to sit outside at night, and last night I started imagining myself as random fantasy creatures.  Here and there between my other posts, I will post my series of  wild imaginings!

On Hold…

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Today I had the pleasure of listening to terrible Muzak for 54 minutes on hold with the Social Security Administration.  I took the opportunity to express my stick-figure feelings while also forcing my sister to listen to those smooth sounds on speaker phone.

Mornings With Chiari

“Sleep well? Hee hee hee”

I have been having sleep disturbances.  I can’t remember how long they have been occuring.  Recently, I awoke from a nightmare where I couldn’t breathe and although I was now awake, I still couldn’t breathe.  It scared my sister enough to insist I call my doctor.  I now have to schedule a sleep study to find out more about my sleep apnea.  

In daily life, it basically robs me of sleep.  Then I am tired the following morning and I usually try to wake up by drinking coffee, but often, I have to take at least one nap per day, sometimes two or three. Being immobile for so long makes my joints hurt and keeps me from participating in life.  Hopefully, the sleep study will help me get better rest.  

The Constant War

Because I tend to look “normal” it is difficult for some people to accept that I fight against my body everyday.  Most days I just take a little longer to complete a task, but at times, getting upright is a battle that I can’t win.  This past Wednesday I had to go to the Psychologist for my disability determination.  I woke up to a familiar stabbing pain that the base of my neck.  My brain was (again!) trying to carry out it’s escape plan.  The pain was enough to give me dark circles under my eyes, a poor outlook on the day, and I had to pee so much (a typical symptom for me).  I went with my sister and my mom and explained  to a complete stranger my illness, its unpleasant side effects, and how it has affected my life.  It was an overwhelming hour.  I think she got a good idea of how Chiari messes with your mind/memory/focus/concentration.  Everyday, I wake up on the battlefield of life, fighting myself to save myself.

After the Conversation Ends…

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Me having coffee with all the people who understand me.

 

A year after the surgery, and I have come to several conclusions:

1. Only my family sees what I go through every day.  They see me in pain, when I am angry, sad, they see the outbursts, the cloudy days, the restlessness, and yet even they do not truly understand what I go through.  Nor would I ever want them to.  If given the choice, I would gladly take the pain for any one of them

2. I have about five friends who know the inner details of my life, and are my friends anyway.  My life can be so gross at times.  Just think, your brain controls EVERYTHING YOUR BODY DOES!!!  Even the stuff that you prefer to keep to yourself behind the bathroom door.

3. Pain is NOT A CONTEST!!!  I do not understand the pain that cancer patients go through.  They don’t understand the pain that amputees go through.  And they don’t understand the pain that I go through.  (I make the exception for those who have Chiari and survived cancer via amputation, or something similar.)  We each have a difficult situation that we have to navigate and chances are there is physical and emotional pain that must be dealt with.  We need to respect the journey of those we meet.

4. My pain/condition/malformation is NOT  a result of God hating on me.  CHURCH!  YOU NEED TO STOP THIS MESS!  My pain is not a reflection of how of feels about me or how I feel about God.  Every major player in the Bible had issues.  More importantly, all of them died, so even if Chiari kills me, I am just doing the same thing as my forefathers!

5. My physical condition is not representative of who I am as a person.  When a doctor sees me, I am a Patient.  To my daughter, I am Mom.  To my mom I am Daughter.  To my sister, I am Sister.  To the client, I am the Designer.  To the listener, I am the Musician.  To the diner, I am the Chef.  To the random person who sees me suffering from a debilitating headache, I am disabled.  Yeah.  What if I told you that I am ALL OF THESE THINGS AND THEN SOME?!  Like the fine diamond I tell myself I am, I have many facets, I am well rounded, and quite brilliant if I may say so.  And my carrots?  The food of the gods.

6. I am deathly afraid of meeting someone I like.  Before, I felt like I had so much other stuff going for me.  Now, I don’t work, I don’t go to school, and I am gifted with the headache that keeps on giving.  I have no self confidence because I dread explaining myself and my condition AGAIN to ANOTHER person.  I haven’t even gotten to the part where I break down when they decide they can’t deal with such a problematic relationship.  I also am aware that I have developed irrational fears.  Working on that.  (Please don’t leave me a comment telling me how what I feel is wrong and what you think  is better because of whatever.  My feelings are just as valid as yours.  Thanks!)

7. I may never be taken as seriously as someone with diabetes or major physical injury.  Somehow, seeing someone testing their blood sugar is enough evidence to be able to understand their situation.  Seeing the scars left from a horrible accident are reassuring that the person is actually in pain, as you can see the evidence.  I get no courtesy in this respect.  I get told that I must feel better because I look great!  They are oblivious to the 4 layers of concealer that I put on to hide the fact I haven’t slept well in a week because of a headache.  If I don’t wear the makeup, then #4 applies.  It’s a lose/lose kind of thing.

8. I would not trade this experience for anything.  I don’t like the situations I find myself in.  I still have scars on my head from when they removed some skin for an EEG.  I hate that I don’t know when or how long my head will hurt.  I hate that my daughter now has a mom who can’t remember what day of the week it is without a phone.  I hate that I can’t remember words sometimes and I feel stupid.  That said, I am very lucky.  Within 18 months of my car accident I was imaged, diagnosed, and underwent surgery for a condition that routinely stumps medical teams who are unfamiliar with it.  I have an extremely supportive family. I would have never made it through this situation alone.  I also now know what it is like to not really carry stress from day to day.  Because my memory is very unstable I wake up every morning with a clear slate.  That is a pretty amazing feeling.  I am forced to live today.  I can’t really plan for the future because I don’t know how I will feel and I can’t remember much of the past.  All I have is right now.  I wish I had known how to live this way years ago.  Even better, I will be able to use my experiences to speak to other people and spread awareness.  And that isn’t so bad.