HOW LONG?!

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I wonder if they will ever know?.

It has been four years since the accident, and three since the surgery.  Between then and now I have had a certain set of neurological symptoms that keep deteriorating.  I have had my concerns since the beginning but now it is center stage in my life and it is affecting me and my life and my family.

It’s a lucid madness that allows me to understand what is happening and also not be able to do anything but watch as my cognitive function fades and my memories disappear and hope that we can stop it before I lose too much.  It is my living nightmare.

The neurologist is hoping that this medication that he put me on will help improve my quality of memory.  I am hoping more than he is.  Really, I think he is trying to see if my memory loss is following the same pattern as Alzheimer’s and Dementia.  This is my theory as he was clear that we are doing a light treatment since we have no answers as of now.

No answers.  I see him again in 4 months.  In that time, we will see if there is improvement, no change, or decline in memory.  We haven’t even touched on the seizures.  We increased my valium to see if it helps suppress the nighttime seizures.  Now we wait.  We keep notes, we live life, and we wait for the new year to bring us news about my health.

This journey involves a lot of faith.  Faith that God isn’t trying to drive me crazy and that He has a plan.  Faith that my family will stick with me no matter how insane this situation becomes.  Faith that my doctor has a gut that is correct that he has faith in.  Faith that I am going to look at this situation one day and see every blessing that isn’t currently apparent to me.

Everyone’s journey is different.  My hope for other people who suffer with medical uncertainty is that they will have the faith to continue on through their journey and bring to light all of the bottle necks, red tape, and other events that make this process more difficult, longer, and emotionally draining.  Be the change that you want to see.  Hold open the doors you pushed open.  It is important that we support those who do not have the support system or voice to speak out.

I hope that one day we will have answers for Chiari Malformation and it’s many comorbidities, but until then, we are the advocates who have to keep the wheel of change turning and even speed it up.

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Future for One?

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“I am gonna spend the rest of my life with the man I love!”                                                               “I am getting a headache.  I can’t wait to spend it alone.”                                                                    “I believe we have a date?”

2016 will go into my journal as a very forgettable year; I can’t remember most of it.  The things I can remember are worth forgetting (looking at you, election!!).  More than any other year, I have seen a large number of my friends get married.  I put so much energy into bettering myself and learning who I am and want to be, that I decided that a relationship was a drain of my precious, limited time.

As I look forward to 2017, I have not a single plan.  There is no more school.  There is no more work.  I have hour upon hour of free time to think about how I should have reached out and maybe went on a date or two.  It felt different when I was consciously decided to not date.  Now, I am getting ready for my disability appointment and I feel like that is a black mark.  I am no longer a productive member of society.  I do not keep a schedule.  I have gained weight since surgery.  I can’t remember much of what I hear of say.

Honestly, a year ago, I would not have wanted to date someone with these issues.  I didn’t have time for that.  Now I guess I have projected that onto myself and I don’t see how anyone would want to date me.  How would someone feel if I cancelled half of our dates because I “don’t feel good today”?  How would I feel?  How would someone feel if I needed another brain surgery?  Would they be willing to deal with me in a physically infantile state?

I have always worked the loneliness away.  I discovered how smart and fun I am.  I finally tapped into my true singing voice. I found a home in my church family.  I finally was feeling confident parenting alone.  I felt like a combination of all these things was enough to keep me asleep at night.  Now, I am awake at night, living with pain, and knowing that I only have 4 years until my daughter spreads her wings and I will be alone.

I hadn’t planned on worrying about this for another 30 years and I had hoped to not care by then.  I am no longer flirty.  I do not wish to bear children.  I could care less about shaving my legs.  I am just a girl who wishes it would all go away and I could enjoy my previous life.

That being said, I will be happy for my friends because they deserve to be happy and encouraged.  I will start attending weddings in 2017 (breaking my 20 year anti-wedding streak!!) and I will be a witness to their happy moments.  I will cheer for them and clap for them, and smile at them.  Then, when I go home and settle in after these events, I will thank God that I am alive and able to see that kind of joy and happiness.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

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“I can’t believe it’s been a whole year!  I just got a promotion, what have you been doing?”                                     “Surviving!”

The world at large does not have a thorough understanding of recovering from brain surgery.  While their lives breeze by marked by accomplishments and milestones, my days are monotonous and almost indistinguishable from one another.  My memory started fading over a year ago, and I only have vague recollections of what has been going on in my life.  I have not achieved anything, and it makes for very awkward conversations.

Dreaming…

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Dreaming the dream!

Life is full of dreams.  They change and mature as we grow and sometimes when we are on the cusp of achievement, the dream dies.  I felt this way last year when my doctor told me I would need brain surgery.  Everything that I had worked for was snatched from my hand and I was left with what felt like nothing.  I could no longer sing arias or even hold my guitar.  And when I could hold the guitar, my fingers wouldn’t always cooperate.  After surgery, I got a ukulele to help me with retraining my fingers to listen to my brain.  It has been the most comforting item during this period of my life.  When everyone is sleep and I am wide awake, I can sing and play and feel like my voice is still relevant.  I may never go back to school.  I may never perform a solo again.  I may never be what I thought I would be.  I will sing though, and I will imagine all the people whose hearts I could have touched.