The Lucky Monkey

I do not consider myself to be a “lucky” person.  I do not believe in luck.  I believe I am blessed.  That might seem odd, but I believe that blessings deserve more appreciation than luck does.  However, I would like to take a post to really deal with luck and the perception of many people around me.  Then, I would like to deconstruct this notion of how “lucky” I am.

“You are so lucky Chiari can be fixed.”  Ok, so it turns out that Chiari Malformation is basically a structural defect present at birth.  It isn’t like the neurosurgeon regrew my skull and brain.  He removed part of my skull (which would make it MORE deformed, right?) and burned my brain back into place (it is more complicated than that, but whatever) to help relieve the backup of cerebrospinal fluid.  I also “donated” part of my C1 to the cause of better fluid flow.  Here I am almost nine months later and I still have headaches, nausea haunts me daily, and this blog is the best memory I have.

“You are lucky to have people who care for you.”  Well, I am very fortunate.  I do not believe that luck has anything to do with it.  I think that if it was just luck, only one or two of my family members would be so enthusiastically involved in my health life.  What some people call “luck” in this case, I call a “family forged in the fire of pain”.  We have always been a family that sticks together, but our love for each other is cemented in the experience of my brother’s murder.  That day, we learned that we are all we have.  So, if I were to extrapolate as freely as people judge my “luck”, I am “lucky” my brother was murdered because I now have people willing to deal with my issues.  That’s insanity.  If this doesn’t make sense to you, it’s because I am sleepy typing this, but  I need to get it off my chest.

“You are lucky you don’t have to work.”  This one.  Wow.  Where do I begin?  A year ago, I was waking up at 0200 so that I could get to work by 0300.  I would touch hundreds of boxes a day, pulling them, lifting them, remembering all the zip codes in Clark County so I could get packages to their intended destinations.  I would walk over 8K steps each morning while practicing opera because when I got out of work at 0830 I had to go to school…where I took an average of 9 classes as a music major.  When that was over, I would come home and depending on what day it was, take my daughter to Taekwondo, go teach art for the county, or teach at church.  Then I would come home and work on my music theory homework, practice guitar or piano or voice, and wind down to be in bed by 0000 so I could get up in a few hours and do it again.  This doesn’t even include doctor appointments, grocery shopping, or anything else that one does in the course of a normal, adult life.  While I was extremely busy, I felt like I had purpose.  Through my job I would be able to afford my under and grad education so I could be a music therapist.  I wanted to do this because it would help me to take better care of my daughter and prepare for her future as well as help people who have suffered traumatic injury.  Now, I don’t do any of those things except teach at church once a week, and when possible I get my daughter to taekwondo.  The best part about people saying this is that they say it in the clothes that their job bought them, after getting out of the car their job allows them to have parked at the house their job pays for as they prepare for the vacation they get paid to take by their job.  They say it from a place of stability that I miss sorely.  I got my first job at 14.  in 20 years, I have spent maybe 4 not working due to my brother’s death, having a baby, and that whole recession thing in 2008.  Now, I go into my ninth month of not working.  I have gained pounds.  I can’t afford a gym membership.  My job paid for that and this whole brain-thing makes it next to impossible to exert myself or even go outside when the temp is above 80.  I also can’t afford to buy a new wardrobe to accommodate all this extra Michelle.  My job paid for that.  I can’t de-stress by taking myself out once a month.  My job paid for that.  I can’t afford to take my daughter on a vacation, because let’s be honest; this last year has been extremely trying for her.  My issues have dominated her life and she has had to struggle to get through school, and I wasn’t able to help her, or even be really supportive.  I can’t even take her to the movies unless someone else pays.  My job used to pay for that.  I live with my parents because I am not working, so I can’t pay a rent.  My job used to pay for that.  Wow, I could go on and on.

Now, on the flip side of the job thing, I am blessed that I am not hungry and homeless.  My parents have been my biggest supporters.  They deal with me and my symptoms daily and that isn’t “luck” folks.  That’s love!  If I seem salty about not having all of these things, it’s actually because I don’t have the potential to earn them right now.  I have always enjoyed working.  I have always been thankful I had to get up everyday and labor to enjoy the things I came home to every night.  The worker is worthy of his wages.  I worked hard.  Now, I can’t even stand and wash dishes without feeling like I might pass out.  By my magic powers of extrapolation and my athletic ability to jump to conclusions,  I guess being “lucky” I don’t have to work means I am lucky to feel like a useless member of society who must rely on the kindness of others to even survive.

Seriously, the longer I deal with Chiari and whatever else is going on, the more I realize that we take for granted our ability to function normally.  Previously, I never considered the limits and restraints that some people have on their lives and how that affected their perception of self.  I never thought that I wouldn’t be able to garden or work on cars or bend down for more than three seconds.  I wonder how many times I opened my mouth and said something this stupid and thoughtless to someone.  How many times I took for granted the energy and ability that I had.

I am not writing this to shame anyone.  I honestly want you to know that your words carry weight and power, especially when you are speaking to someone who has hours and hours to contemplate them.  The people who have said this to me are the same people who take pride in their jobs, or their gym routine, or their choice of a good vacation destination.  Speak life and love to those who sit at home waiting for the pain to go away or wishing they could just be normal again. It is not the normal human condition to be unable to contribute to society, and we don’t want it to be.  We want to feel purpose.  We want to be tired because we accomplished something, not because “today isn’t working for my brain”.

Stop trying to make me feel “lucky” for being born with an abnormality that keeps me from living my life.

The Waiting Monkey

Today I went to see the neurologist.  I did not know what to expect but I had hoped for a positive experience.  I know that I may always suffer from issues related to my brain, but I want to keep a positive outlook and reasonable expectations.

In life we often want an answer.  Unfortunately, the human body holds may mysteries and they take time to be unravelled.  Sometimes, it remains a mystery.  We want our doctors to be able to diagnose us with a limited amount of information.  Sometimes there is an anomaly that allows that, like my cerebellar herniation seen on an MRI.  Sometimes, they can not provide answers because test results have simply raised more questions.

Today, I spoke with this neuro and his staff about what has been going on.  The inability to retain memory, loss of focus, imbalance, tiredness.  As I spoke I felt like I was crazy.  Why would he believe these symptoms?  He sat down right in front of me and began to explain that while he is a specialist, he is aware that he does not have the ability to diagnose what is going on with me.  In my case, he will be more of an intermediary than a destination.  He will get me updated MRIs, he will get my bloodwork done, and he will do the EEG to make sure that my brain is transmitting information.

Beyond that, he will be of little help to me as I need a neuropsychologist.  We have to try to understand why my long-term memory is intact, but I can’t remember what happened yesterday.  That will require another referral and more waiting.

I think a lot of people would have been unhappy with my outcome.  I didn’t leave with any answers.  I happen to think that something wonderful happened in his office today.  He was very straightforward with me about how the process would work, where he fit into my team of doctors, and the limits of what he can do for me.  He wanted to make sure that I am prepared to go see this sub-specialist so he did everything in his power to smooth out that process (that is why he ordered all the tests).  He gave me the timeline for my testing and my follow-up with him, which hopefully will be close to date with the next doctor.

Life isn’t always going to resolve itself, at least not like we would desire.  It is good to have doctors who are willing to help you jump the hurdles of the medical system.  I am sure that doctor knew that I really wanted to be told something that would explain what was happening to me.  I am glad that he chose to explain that he doesn’t have the answers, but he is willing to walk me to the next step so my experience will be a little easier.

You are a person.  You have (or if it’s a bad day, had) a life.  You have feelings.  You deserve to work with a medical team that is experienced, will thoughtfully listen to you, will work with your other doctors, and that knows the limit of their expertise.  My neurosurgeon knew that he could not deal with my memory issues.  He deals with the structure of my brain and spine.  The neurologist knew that memory is a sub-specialty that he is not qualified to dabble in.  I feel very confident in my team because they know that individually they cannot solve the issues I am dealing with.

If you are uncomfortable with the way your doctors are handling your case, first ask yourself if you are expecting something unreasonable.  If not, talk to the doctor and see if you can get a clearer explanation of what is to be expected of each doctor. If that doesn’t ease your situation, call your insurance company and ask for a new doctor.

It helps if you have a close family member or friend with you at your appointments.  They boost morale, ask the questions you forgot or didn’t think about, and they will help make sure your complaint is heard.

The Monkey Bubble

I was floating around the pool earlier today, thinking about how hard it is for me to just float around when I feel like I could be doing so many more productive things.  I could clean, cook dinner, make jewelry, practice my music or ukulele.  Instead, I fought every urging to get out and forced myself to lay on my floatie and soak up the sun.  I did 15 minutes of laps, 30 minutes of arm weights, and practiced ukulele.  I was productive.

I thought back to the time after my surgery.  I was staying with my sister and I had a meningocele that made me look like  had a tumor on the back of my head.  Any time it was there, I had to lay down on my back until it got smaller.  I remember my sister telling me I had to lay down and I couldn’t do anything because I needed to heal.  I remember the feeling of hot tears in my eyes as she walked out the door so many times to let me sleep.  I remember crying myself to sleep and feeling useless and baby like.  All I could do was cry.  Eventually, the meds kicked in and I would fall asleep.  I had about 6 weeks (42 days) of this never-ending cycle.

There were days I wished I hadn’t made it off the operating table.  Days I spent in “negotiations” with God.  Days I longed for some way to feel useful.  It felt like forever.

Then, there were days when I felt pretty good and I could spend a couple hours out with my family or running errands.  But when I got home, someone would see that the bubble appeared and I would once again be relegated to the bed with an ice pack. It is hard to feel like an adult when your child is functioning higher than you are.

What I couldn’t see was that I was doing a very important work.  Recovering from surgery is no easy task.  Especially brain surgery.  Every part of me was affected.  Every part of me needed time to adjust to my new circumstance.

Here I am, 8 months out of surgery, and I still have issues.  I sometimes fall.  I forget words.  I get lost.  I am hyper-emotional.  I get headaches for most of the week.  I have not regained all of my strength.  I am still healing.  I still have to take time to rest.

Still.

I need time to be still.

That isn’t wasted time.  When I sleep for 16 hours a day, it is because my body is telling me to do that.  When I have to stay inside because it is hot, it is because my body can’t take the strain of trying to cool off.  If I ever plan to use this body to its potential, I have to give it the time and space it needs to get better.  I owe that to myself, and my child, and my family.

I am not wasting time, I am using it as my body needs.  I may no longer have a physical bubble on my head, but I have a great sense of listening to my body and I don’t always feel so useless when I need to rest.  This is now my full-time job until the doctor tells me otherwise.

I will never tell anyone that it is easy to overcome your obstacles.  I can tell you that you will be stronger on the other side, though.  It is normal to feel a bit defeated when your life it pulled from under you.  It is normal to grieve the loss of the future you wanted so badly and worked to achieve.  It is NORMAL.  I am NORMAL.  You are NORMAL.

Whatever your bubble is, embrace it.  Cry for it.  Talk about it.  It will go away eventually. but in the mean time, you have to deal with it as it deals with you.  Healing will happen in your body, your mind, and your spirit.  Just be ready to meet the new you.  You probably won’t be what you imagined.  You will be better!