When Someone Listens…And Acts

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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.

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Smile: Adventure Ahead

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Autonomy, worth, friends, self-esteem, treatment plan, life, love

There are plenty of questions that linger after Chiari Decompression, especially if your life doesn’t return to normal.  My friends often can’t understand that my brain can no longer do the things that it used to be able to, and no amount of believing in myself changes that.  Then I question my autonomy.  Will I be able to be a productive adult for the rest of my life?  Will someone have to keep an eye on my finances and everything else to make sure I don’t become destitute because I can’t remember to pay bills?  What kind of life does that make for me?  Is that a life worth living? What if there is no treatment plan that will take away my symptoms?  Will my friends tire of having a “sick-friend” after a few years?  How will this all affect my self-esteem?  Will I be able to live with myself and not resent this brain of mine?  Will anyone ever be able to love someone like me? What If I deteriorate?  Would it be fair to the other person in 20 years?

Unfortunately, it is easier to ask the difficult questions and languish in self-pity than it is to be bold and confront the new normal with a big smile and only the expectation of adventure.  I am a Christian.  I regularly attend my church.  I am in ministry inside and outside of the church.  I love Jesus, and I believe that all of this is happening for a reason, but that doesn’t mean I don’t think and process life like a human.  I particularly deal in grief and the grieving in ministry and it has given me a much wider perspective about what I am going through.

I have lost a lot of my life and I am sad about it.  Of course I have days where I am overcome by the magnitude of how different I have become.  And -this- is what people don’t understand: I am fundamentally different than I was before my head was opened.  I don’t even think like I used to, but I have memories of thinking and being a certain way.  My emotions are foreign invaders which have occupied my mind and now everything is filtered through them.  My drive to accomplish and accumulate had turned into a drive to love people and give away what little I have.  And this is just the beginning of the changes brought about by Chiari and the surgery.

So, when I feel sad, I try to find someone that I can help, so that I am not focusing on my own problems.  When I can’t remember my worth, I study the Bible and I am reminded that Jesus died for my sins.  When I wonder if I will be able to take care of myself, I remember that I have a loving family that always keeps my best interests at heart.  I may have to deal with pain and uncertainty, but I will try to do it with a smile and the expectation of adventure a little more.

The Sound of Chiari…

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One of the many symptoms of Chiari Malformation is tinnitus.  I notice mine more when my head hurts and it just gets increasingly louder until all I can hear is a chorus of noise.  It drowns out the sounds of people talking, music, and the TV.  I call it the sound of my pain and it is now just a part of my life.

 

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.

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Weathering the weather…

This is how I feel my brain responds when I see a noticeable change in the weather forecast.  In many cases, I  don’t even have to check the weather, I can feel in my head and neck the atmospheric changes.  

I hate that the weather has so much influence over how I feel, but I try to make the best of it and find something that I can do that  will bring me even a tiny amount of happiness .   

This is the life!

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“I wish I could stay home and not work.  You are so lucky!”                                                                                                                                                      “I know!  Having a constant headache and being broke.  THIS is the life!”

When we work a lot and are constantly on the go, we tend to see people who don’t work as either lazy (if they aren’t trying to work) or on a medical “vacation” (if they have ceased working due to illness or injury).  I did not realize how ignorant this view is until I was put on a medical vacation.  When they told me I could not work any more I was relieved because I was scared of hurting myself or someone else at work while I was having my symptoms.  After a while, I began to feel smothered by the nothingness that had become my life.  Waking up every morning knowing that I would not be productive made me feel useless. When my short term disability ran out I became 100% financially dependant on my family.  I have to ask someone to buy my deodorant.  That is the worst feeling for someone who has worked since age 14.  I worked and worked and worked, and still, Chiari has robbed me of even the most basic of dignities.  I have to find the blessing in it (which is that I have a family willing to sacrifice A LOT for me) and I hold on to that through everything.  There are people in my position who do not have a family that loves them like mine or that is able to contribute financially.  But please, don’t mistake you need for a vacation as an equal for my requirement of not working.  After all the doctor’s appointments, tests, labs, imaging, vomiting, crying, and begging God for mercy, I NEED a vacation.  I can’t afford one, though since I am not able to work.  Be grateful that you have a reason to get out of bed every morning that pays you.  I miss my job fiercely.  From the moment I wake up, I am a bill.  I use electricity, water, I have co-pays, I need toothpaste and food, clothes, AND I have a teenager who needs everything that I do.  Be as thankful for your ABILITY to work as I am for my family’s graciousness everyday.