Monkey Deprivation

I have had a few occasions that warranted a hospitalization, however I was usually sedated in some way.  I was at the hospital for five days after having my daughter because my heart wouldn’t return to normal.  Brain surgery was the most significant stay, but I was heavily medicated as the pain is absolutely fantastic (in a not-so-good kind of way).  Being on the epilepsy ward meant less medication than normal and it was quite the experience.

I was skeptical that they would find anything because I had been trying to stay calm and still for a month so that these seizures weren’t happening.  They thrive on making seizures happen, so we started with the light box thing.  Basically, I sit with my eyes closed, and a technician puts a little LED screen in front of my eyes.  Then, she cycled through light patterns in ten second increments with ten second rests between and each time the light was slower until the last time when it was at the highest speed again.

When that was over, she left and we decided on sleep deprivation to help get some results.  I suppose that is the real topic of this post.  I have lived a life where I barely slept and it seemed like everything was fine, but under this setting, it feels like medical torture.  IT IS NOT TORTURE!!

The first day we had stayed up until three in the morning watching movies at the hotel, so we went in sleep deprived.  After getting the electrodes placed and the light test, it was pretty much keeping awake while enduring many neurological assessments and vital checks.

Staying awake without really using up energy gave me a lot of time to think.  There were times that my mom was able to get out and I was in the room alone for a bit and by day three I was begging my body to have a seizure.  Really, having a seizure is the ticket home!  It may seem weird, but the whole point of being there is so that they can record your seizures and diagnose them.

Even after having a couple of seizures, they wanted more for a clearer diagnosis.  By day five I was ready to induce a seizure by hitting my head against a wall.  At this point, time did not matter.  My stomach was wrecked, I was ready to go home, and I was tired of having to ask EVERY SINGLE TIME I HAD TO GO TO THE RESTROOM as I was hooked up to a monitor and sleep deprived.

Looking back, I spent a lot of time trying to be in the moment.  I did cross stitch.  I read and played games on my phone.  I read.  I watched cartoons.  Filling twenty hours is quite the task after day three.  That is when my dark side came out and tried to find ways to secretly take naps.  The thing is, I am hooked up to monitors and my room is videoed, so I always had someone to come wake me up and deprive me of sweet, sweet rest.

To those who really know me, it is no secret the depths I will go to to get what I want or feel I need.  I can justify almost anything and what a dangerous power to wield.  Luckily, I don’t have that mean streak I had when I was younger, so I have spent the past two years jumping through every single medical hoop and participating in all of the dog and pony shows so that I could get myself a referral to Cleveland.

Some people tell me that they couldn’t do sleep deprivation and I can’t really understand the reluctance.  I walked through a medical gauntlet before I ever got on a plane and after a couple biopsies, countless images, the “oscopies”, the manometry, poking, prodding, scraping, collecting, sampling, and everything else, five days of sleep deprivation is like a weird vacation to top off a very wild few years.

Having my mom with me was also fun because she stayed up half the night being “deprived with me” then went swimming during the day and took a nap!  It was a comfort being there with her.  She is one of the few people who understands what makes me tick and how to keep me encouraged.  Honestly, I don’t think I could have gone on this type of trip without her being there as she would want to a full status update every twenty minutes and I can’t say I blame her.  I would want to be there for my daughter if she were in my position and I am glad to just be home with her now!

My largest lesson from sleep deprivation is that it turns time into a fairly useless construct.  Things had to happen at certain times, like food delivery, regular medical checks, and doctor rounds.  Yet I personally had no responsibility to time except a time to go to sleep and wake up.  Being on the opposite coast was also a hurdle because I was up at seven in the morning, but it was three in the morning in Las Vegas.  My people are not a people of the morning.  I was able to have a few conversations, but really, the time difference made things a little difficult.   Later in the day my mom would be back and we would spend time talking and having dinner.

In the end, we got a diagnosis.  We left the hospital in the morning and we made it home that evening.  I didn’t sleep on the plane.  I got home and the reality of my trip sets in as my body returns to normal.  Being unable to really bend and move around freely tends to slow the gut.  My gut is already unhappy.  I was miserable for about my first four days home as my body went crazy.  I was very dehydrated even though I drank plenty of water.  My hair was gross, so it was conditioned for a day.  My skin just stays angry anyway.  Most notable is the deep need for sleep.  So much sleep.  Uninterrupted sleep.  It is difficult to not feel guilty for the amount of sleep I get in a day.  I know that I don’t have much to do, but I am tired in an unreal way.

As the trip slips further back into my mind and the days pass, my sleeping is normalizing.  I still need a nap most days, but I am trying to build stamina and I suppose it will take time.  Being sleep deprived helped me realize the signed of extreme fatigue (awful dad jokes and wild mood swings) and it reinforced how important it is to get sleep.  Even if extra sleep is needed.  I require a nap most days.  If I don’t get it I tend to be moody and angry.

The most surprising part pf the trip?  Mom and I were not at each other’s throats and she has become a master at diffusing my tantrums.  It is this type of experience that really allows her to shine in her role as parent and caregiver.  While she didn’t have to do the main care giving, she gently woke me up in the middle of the night when I had to have things done,  she made sure I had things to do and some small comforts like sparkling water.  She was selfless and still listened to me whine.  She shows me that I still have a lot to learn in life and that I am still worth spend time with to teach those things.

If you find yourself in a long term and unpleasant medical situation, keep hope alive because that makes it SO much easier to go through the poking and prodding and testing.  Even if you don’t get the answer, if they were even able to rule something out then you have narrowed your focus.

Chronic illness is a long-term issue that often involves multiple issues and is a pain in the butt to deal with.  This is one of the things that MUST be accepted!  Time will often be involved in diagnosing and also in treating.  Chances are, if it is “chronic” it is going to be hanging out for a while and acceptance will become crucial to move forward in life in a healthy way.  There will probably be painful procedures.  Ones that don’t give you any type of useful information.  There will be imaging that shows nothing.  Tests that are normal.

I stand here, with a diagnosis, telling you that after almost three years, I have answers to what is happening in my head and body besides the Chiari Malformation.  Is this everything?  I don’t know.  It is something that I will spend time working on treatment and therapy with my medical team and see what all gets resolved before just pressing forward.  Having this diagnosis could be the key to a number of my current medical issues.  Maybe it is not.  This is why it is imperative to accept that help takes time and desire, otherwise nothing will get any better.  Neurological problems are difficult when compounded with trauma.  Give yourself time.  Give yourself space to express yourself in multiple ways.  Let your support group know what is going on in your life and I always advocate for therapy.  There is no shame in speaking to someone about what has gone on in your life if it has reemerged and is currently affecting you.

Therapy.

If A Monkey Had The Chance…

Today my sister asked me how my new meds for seizures was working.  I told her that I think it may really be working.  Of course, it makes me sleep half of the day but everyone tells me that my body should get used to it in a few weeks.  Suddenly, my whole mind opened up and I saw myself as an actual contributing citizen again.

I pictured myself waking up and going to work, coming home, making dinner, taking a shower and going to bed and doing it again for another thirty years.  If I were somehow able to pick up what is left of my life, I would recede into the background and go back to a quiet life where I only sought the comfort of my pets.

There would be no funerals to direct or classes to study for and teach.  No walks or charity cooking.  Just living my life the way I always wanted.

Of course I have to ask myself how do I justify leaving the arena of charity work?  I wouldn’t be!  I would simply make a lateral move to the funding portion.  Instead of seeking funds, I would be in a position to provide funding for research.  That is my biggest hope is for more funding and I am not sure that it matters how I achieve that as long as it is legal and moral.

Even at church I would simply move from minister to congregant and that doesn’t mean I won’t help people or read my Bible, but I am not going back to working AND being a minister full time.  There was a time when I wanted to devote my life to serving in ministry, and since that came to fruition my life has been a wreck and I hate living this life.  I hate having feelings and having them hurt.  I hate this broken body and brain.  I hate having to be a good example all of the time.  I hate feeling lonely and forgotten.  I miss the touch of humans but not their over-perfumed hugs.

The thought of feeling like my life is “normal” again is tantalizing.  Yet, in my musings of doing what I want to do, I feel like I would end up with a type of chasm in my self that I would try to fill with something.  Or maybe I could just learn how to chill out.  Maybe the chasm can co-exist with the rest of me.

Does this make the time, energy, and money I have put into awareness and fundraising worthless?  Of course not.  For the time when I had nothing better to do, I helped raise awareness.  I have devoted many hours of my life and the lives of many other people to raising money for Chiari Malformation.  I just want to be a different part of the process now.

I just don’t understand why I feel guilty about it.  Do I owe my everything to everyone?  How much do I have to give back for it to be enough?  What standard am I going by?

Most important, what if I am not able to go back to work anyway?  Will I continue doing charity and awareness work because I feel obligated or like I have nothing better to do?  Will I remain doing the same thing day in and day out because this is the hand I have decided to play?  Is that wrong?  I have no idea.

This is one of the reasons that I hate hoping for anything.  Nothing worth anything has ever come of my hoping.  I will be crushed if my doctor takes my license.  I will feel useless if my disability goes through and I am legally “disabled”.  I am not sure what you call the next step after you feel your life has been ruined and then destroyed.  Vaporized?

I don’t know how things will turn out.  I got the referral to the seizure clinic in Cleveland, but if the meds work, what is the point?  I am not about wasting money or time.  So much has been wasted in the past three years.  I think this weekend will show how well this medicine is really working and then it will hopefully shed some light on future things to come.

Honestly, though, if I were given the opportunity to go back to to life making money and paying taxes, I wouldn’t look back.  I would archive my blogs, change my social media, and just be a normal person and maybe never talk about this dark time in my life.  I would love for this to be forgotten like all of the memories I have lost along the way.

The Monkey’s Phantom Pain

So, my left foot felt like it was being stabbed in the sole last night.  My left hip was in pain, and I assumed it was just my body looking for more attention.  As we left church, the pain became just a burning sensation when I tried to walk or it touched something.

I wake up this morning, step on the left foot and the whole thing hurts up to my ankle.  So, I stepped on the good foot, and hobbled my way through the morning until I couldn’t take the pain anymore.  While all of this was going on, I was blessed with cramps (yay, no baby!) and my headache began to intensify.  I already know that Headache + Cramps = FIRE IN THE HOLE!  I have already apologized to my family members in advance because I can’t get my shot until Tuesday and by then, the house could be on fire.  Not literal fire, but mass emotional upheaval.

I decided to take a nap.  I wasn’t sleepy, but sometimes the pain wears me down enough to just sleep.  Sure enough, I woke up, put down my left foot and now the pain has risen above my ankle.  It’s making it hard to walk and the shillelagh is becoming my best friend.

There isn’t much to do until I see the neurologist.  Four days away.  I suppose by the time you read this I will have already gone, but will have posted an update!  It is difficult to just wait but really nothing that can be done about it.  Most appointments have been cancelled so that I am at less risk of hurting myself.  I am hoping that I can get through these next few days gracefully.  Especially Sunday.  I plan to be at church no matter the pain.  I just have to keep my mouth under control while I am there.

The biggest issues are pain and boredom.  When I am in this much pain it is hard to focus on something enough to be entertained or distracted.  I suppose that is why I just try to sleep.  I don’t take pain meds and while some of my meds help with nerve pain, I can only take them so often because of their side effects and they weren’t prescribed for acute onset pain, so they aren’t the way to go.  I hope that the neurologist has a plan because otherwise, we gonna talk about getting a new brain.  There is nothing wrong with my leg!  I have had it tested.  It is fine.

For me, that is the most difficult part to accept.  I can handle my foot hurting because it was run over by a car or I dropped something heavy on it.  I cannot wrap my mind around my body feeling this way just ‘because’.  The nerves are upset today so they are in rebellion.  Well, that’s just great, we couldn’t save this for some other time when I was less busy?  I have no time for this nonsense.  Yet here I am, dealing with this nonsense.

How many people out there are dealing with this nonsense?  Nerves getting on your nerves?  ME TOO!!  Random muscle spasms?  ME TOO!!  One leg in pain and the other asleep?  ME!  TOO!!

Where do we go for respite?  I know not!  What I do know is that eventually, I will have some kind of answer as to what is happening in my body.  I have hope when I get answers that it will help others to get answers also.  We have to be the lights in the darkness because right now, medical science has so much to learn about the brain and we are the key.  We have to be willing to endure pain and tests and waiting and tests and surgery and tests and even tests!  I chose to disregard pain management because I don’t want a bandage.  I want my wound tended to and healed.  If that means it hurts, well, there’s always sleep.

I don’t expect everyone to make the choices I make because we each have to do what is right for our own lives.  If I were able to work, maybe my pain management choice would be different.  I did try it. Facet shots in C3 and C4 and I remember the sound of my tears hitting the floor as they moved from one area to the next.  I was strapped face down and there was a hole my head rested in where I could see all the feet and the floor.  I had to cry in silence so nothing would be damaged in the process.  So it isn’t like I haven’t tried.  Since opiates do nothing for my pain and they haven’t given me any type  of actual diagnosis relating to my nerves, I am going to just wait until we figure out the problem.

The nerves function from the neck down.  Anything I feel is originating in my brain.  See, that is where the hard part lies.  We understand the heart and how it is built and functions.  We understand muscles and bones and lungs, but we are severely lacking when it comes to knowledge of the very organ that holds our knowledge.  Somehow, this jelly-like pink blob full of wrinkles has control over not only the functions of the body, but also forms the very thoughts and ideas I am using to write about it.

We know that it can be injured and people can survive.  We know that injury to it can lead to change in personality.  We know that some people are just born with brains that seem off or different from the majority either in a good or bad way, depending on the difference.

We don’t know the actual mechanism by which it functions and malfunctions, though.  We have our theories.  Most neuro medications are based on the theory of how certain receptors work.  Then when something major goes wrong, we aren’t sure why, but that is what starts giving us insight.  So, I want them to find out all they can from my brain and add it to the existing information so that one day a cure for Chiari Malformation can be found.  Or a better treatment plan for ANY brain issues.

If your brain is being a jerk, know that I understand.  Don’t hate on yourself because of your brain, even if you really want to because your brain is special and the right doctor will help you understand why and how to help.  It takes time (I was decompressed THREE YEARS AGO!!) and that time may not be fun or easy, but you can help be the key that unlocks the mysteries of the brain.

Still, if you are able, take time to rest and sleep.  Journal and talk to someone who can listen.  Don’t let the pain overtake your beauty.  Let your hurt out and allow others to help you bear your burden.  Our loved ones often don’t know what to do, so it is up to us to inform them that we just need someone to listen and possibly make dinner tonight.  Also, LOOK FOR JOY in things.  Flowers, birds, puppies, trust me, this helps balance out negativity.  We get to choose how we handle even the worst of days.

Choose wisely.

Monkey Problems Disappear

Life has been hectic. The holiday season brought all kinds of work to do and my doctors visits were getting out of hand. 5 visits 4 days a week, and any special appointments on top of that made it difficult to do anything but sleep and prep for the next visit. On days I didn’t have appointments I had dance class and I have a home routine for physical therapy twice a day. Plus a walk to get my blood flowing. And boiling eggs so I could take another new medicine.

Now, I have thinned out my appointments, but I still have physical therapy twice a day and dance, and class at church has started back. So, I am reading through about Solomon and his achievements to make a study for class for Ecclesiastes. This is so difficult now. I did not appreciate how easy it was for me to put together a study. Now, I am a stuck slogging through, but I will get it done.

I find myself with moments of time that I know I can find a better use for, but I keep wanting to go to sleep. These headaches make it almost impossible to see and even understand what I am doing. So, maybe tonight I will listen to the Bible instead.

I have found that my energy level changes drastically with the weather, with my hormones, if I am sick. Do NOT feel bad about taking time out of life to care for yourself. I think that it’s like the oxygen masks on a plane.  You put yours on first and THEN help others.  At first I had to learn how to not see it as a “problem” that I was causing or needed to be solved.  Some days I am able to do more.

On days where the couch is my home, it is because I am resting my tired body.  I am not being a problem by not helping around the house.  I am staying out of everyone’s way and not knocking things over.  I am giving myself the rest it needs to do a good job when
I am able.

Once it isn’t a “problem” then I have nothing to feel bad about.  I just have to listen to my body, like everyone else does!  My body happens to take more naps than the average body similar to my own.  I have taken four naps in one day, but the sky is the limit.  Beat my nap-time score if your body needs the rest and be proud that you finally learned how to take care of yourself!!!

Holiday Monkey

This time of year is when we tend to reflect on how thankful we are for things that we have, even though we should be doing that all year, right?  I am going into the holiday season with therapies and doctor appointments and lawyers and all kinds of wildness!

I must admit, I have no idea how I’m going to handle the rest of the holiday season.  I made it through Halloween, which I have never been fond of.  Like, just go buy candy.  anyway, once that was over, all of the Christmas stuff came out with some turkey stuff here and there!  However, for me there is is very special day stuck off in there.  The day celebrating the birth of my wonderful daughter.  I actually made it through her Sweet 16 party AND made it to church the next day!  Seriously, I had so much fun!

Now, we have a play that everyone in my family is somehow involved in, then right after that we have to prepare for the church’s Thanksgiving dinner which usually has us there from like 9am to 6pm.  It is a great way for people who don’t have family, or only have a couple of people, or can’t cook, or whatever can come together and eat and sing and fellowship.  We don’t turn people away.  We take food to those who can’t drive or are sick or can’t leave for whatever reason.  We take food out to the homeless.  We feed as many people as we can and it is always such a success.  We found that people preferred this to getting a basket of food they have to cook and may not have access to everything they need.  Plus the more, the merrier!

After turkey day is the worst, three weeks of Christmas parties, luncheons, dinners, and secret santas.  I usually hide out during this time of year because it is just too much.  because just when you think it is over, there is the Christmas program at church which takes weeks of practice in between all of the other social gatherings.  Did I mention that everyone is having babies too?  Baby showers are my kryptonite.  At least at mine we went swimming, but I also only invited five people.  Also, why are we having baby showers on baby number two, three, or four?  Look at me ranting!  That is why I don’t do social engagements.  I often feel like they are over prepared, pretentious events where I have to pretend to have a good time.  I can’t lie that much, so I just don’t go.

Finally, when Christmas is over, there is a whole week of quiet as everyone minds their own business, then it is New Year’s Eve.  I must say, the ONE time of year I want to go to an actual party, I am never invited.  I haven’t been to one in many, many years.  The last time I kissed someone one New Year’s Eve was twenty two years ago.  I feel like, I want to bring in the year with someone I really like, maybe one day.   Until then, I just kiss my phone and celebrate with a good night’s sleep!

The Monkey And The Truth

Today (the day I wrote this, because this will be scheduled out a few weeks) marks 18 years since my brother was murdered.  I suppose it is more euphemistic to say that he passed away or went to be with the Lord, but I am at a place in my life where I have to cut out the fluff and look at the ugliness that life sometimes presents to us.

The mindset began that very day.  Whatever innocence or youth I had left was drained from me as I wrote his obituary.  Sitting through court listening to the wounds being described, stepping out when they showed pictures.  I wanted to be strong enough, but I just wasn’t.  It hurt that I couldn’t gaze upon the wretchedness of what man has to offer his brother.

Then I had my daughter.  Her dad went to prison, but not before my house and phone were surveilled and all of my life was openly displayed in court.  I have never felt such betrayal.  It is a burning so intense that I love and hate the feeling.  In the end, he served time in the penn and I was the bad-guy who was pregnant.  In the end, I got my daughter and he went back to prison for more stupid stuff.  This opened my eyes even more to the real truth of any matter.  I knew that something was wrong, but I refused to look at the truth of the matter.

Here I sit, two decades later and the state of my health has forced me to look long and hard at truth and how to accept it.  I had brain surgery and I have had to accept some things, like:

• there are many sports I can no longer participate in
• I may never be able to return to work in the capacity that I have always been able to function in physically and mentally
• I may never have full control over using the bathroom again
• I will probably use a CPAP for the rest of my life
• the headaches might stay forever…with the nausea
• I may not be able to learn the same way or remember as well
• chunks of time are missing from my life
• I may never be able to suppress my emotions again

This is only a few of the restrictions I live with.  It is a chore just to live but I fear dying would take more energy that I just don’t have.  I have spent a lot of time in therapy just dealing with accepting these changes because of my health.  The feeling of growing more confident in living with my problems was getting very empowering.  I have been working to live with this pain and these issues.

Then, last week, my stepdad watched me have a seizure as I slept.  I woke up that morning feeling like a train hit me.  Later, when he explained to me what happened, I ended up having to go to urgent care so they could make sure I wasn’t injured or needed immediate care.  I just pulled some back muscles and ended up with some autonomic dysfunction.  I am waiting to schedule my 72 hour EEG.

In the meantime, I apparently bit some of the inside of my mouth off last night.  Everything hurts, and I am almost positive that I am having these seizures and just nobody is usually there to see them.

Turns out, of all of the scary, horrible things that have gone on around me, I still refused to REALLY hear what my neurologist said when he told me that he thought I was having seizures.  When my stepdad told me he saw it, I had to accept that it wasn’t just a theory from my doctor.  When I woke up this morning and pulled the piece of hanging skin from inside my mouth (just bein’ real) I had to accept that I can (and probably will) injure myself if I continue to have seizures.  I have to accept that I probably have some noticeable brain damage at this point and things might be less normal than I hoped they would become.

My point?  I suppose it is that euphemisms and platitudes don’t change the reality of a situation.  My brother was just as much murdered as I am disabled.  Sure, he went to ‘be with the Lord’, and I just have ‘some limitations’, but couching life in these nice words sure does make it seem a lot nicer than it is.  I have limitations because my brain doesn’t make memories and I have seizures that mess with parts of my body like a leg.  “My limitation is that I have poor balance,” sounds so much nicer than, “My seizures stop my leg from working and I fall and hit things, injuring myself and property.”

I don’t even know if this matters to most people, but one feels very fake and close to lying when I say it.  The other seems to offend the delicate sensibilities of anyone who does not want to know how you are doing and was asking merely as a formality.  I am tired of trying to figure out which is which.  Now, I just tell people I am alive and still walking.  I feel like this is a truth that can be observed and confirmed by the individual without adding any words that might seem negative.

Many things would be so much easier if we could just be honest without having to lay a bed of roses for these dramatic feelings people have.  “Ok, Jennifer, YOU are mad at the office because you put tuna in the microwave yesterday and now it smells like oceanic death so everyone is telling you how inconsiderate you are.  Accept the truth.  You could have had the tuna cold and not ruined everyone’s week but reheating your TunaRoni on a Monday morning.”  Of course Jennifer, instead of being thoughtful and apologetic, is all in here tears and feelings because Johnny said she smells like that all the time.  She can’t accept that something she does bothers everyone, so in her mind the truth is that everyone else is unfair to her. (This actually happened, names changed to protect the victims.)

Never would I lie and say that accepting the truth is easy.  In fact, it is often difficult because it can shift so many feelings and foundations in life.  I will say that it is extremely unfair that I have to accept the reality of my life but other people don’t and they have the audacity to contradict reality with crunchy platitudes while patting themselves on the back for “showing you the positive side of your situation”.  For me this happens most at church (ugh, right?) because everyone wants to make God the genie who is gonna fix the problem because we want it that way.  Seriously, someone told me that I don’t have faith if I take meds for pain.  Another told me that he just takes a pill no matter how much it hurts and I should just get a job.  I would go on, but then I will punch my monitor, so I am gonna drop this verse:

As he that taketh away a garment in cold weather, and as vinegar upon nitre, so is he that singeth songs to an heavy heart.-Proverbs 25:20

If I am mourning the loss of my brain function, STOP TELLING ME ANYTHING THAT ISN’T VALIDATING!  Any normal person would realize that given some time and understanding of my life changes that I will get through the initial mourning period of the loss of my lifestyle.  However, I now see that many people just can’t feel comfortable mourning with me without feeling sorry for me.

Every negative experience I have resounds in the echo chamber of my heart because I know that if I am going through this, that others are going through this.  I think about people in churches who may suffer alone because someone was willing to pray for them, but not actually listen to their story.  I worry about people in jobs that silently struggle through the day because their issues have been ignored or belittled by co-workers and supervisors.  The worst is the people at home who live with unsupportive family members.  When those who supposedly love you don’t hear you or don’t care, where do you turn for help?

Too many people are falling through the cracks and it feels like so much of it is because the truth has been abandoned for a much more comforting lie that everything is ok.  With my brother’s death, after I was informed I took a shower and went to a friend’s house.  Then I went to work that night life nothing was wrong.  I was surviving on a lie because I understood that the foundation of my life would be assaulted if I accepted the truth.  It came in steps over years.

As for my health, it was wonderful at one time.  So many little things happened, but I weathered them fine.  When I was told I had to have brain surgery, it took three days of intense introspection and weeping to come to terms with the truth that I needed a surgery that has the possibility to severely injure me or cause death, but that without the surgery there was no question that the physical progression of damage WOULD cause possibly irreversible damage to my spine that would end in disability.  I eventually accepted the truth that no matter what I do, I will face a difficult time.  I chose the surgery, and I stand by that decision.

After the surgery, I didn’t seem to get better like I had hoped.  In fact, things got worse.  Coming to accept the truth that things will never go back to anything like they were, well I want to tell you that I nailed it…but I did not.  I have been in therapy for over a year and it has been baby steps and setbacks.  I have to accept one piece of the truth at a time, then some new issue pops up, and I have to consider that it might stay a permanent part of my life.  It’s so hard to know that I will never regain the memories from the parts three years.  I only have the few things that stuck in my head.  I hope that my EEG supports a diagnosis that involves treatment to restore my ability to form and solidify memories.  If it does not, then I will have to accept that truth and still move forward with my life somehow.

The people who only see my life from the outside will never see me put on a brave face as I hear news that shifts my paradigm or listen to me quietly cry into my pillow at night because my head hurts.  Everything seems fairly simple because I just have a headache or feel kind of sick. I stopped explaining in depth because people DO NOT often understand neurology and how it affects everything from your movements to your memory to your thoughts and behaviours, so I suppose I can’t blame them for being ignorant of something that is so complex and doesn’t touch their lives.  Yet, that isn’t really the issue is it?  It is that if I really explain that is feels like someone is hitting me in the head with a hammer and shocks of electricity are racing down my spine into my leg and causing me an agony I wouldn’t wish on anyone.  That would make THEM uncomfortable though, and I suppose I should have to be sensitive of the delicate sensibilities of those around me who believe that bad things don’t happen to good people, or God fixes every problem but only if you are actually a believer, or my chakras are cloudy, or my dead ancestors are antagonizing me for leaving the place of my peoples (Tennessee).  Apparently, people of all walks of life and any age can be more concerned about their feelings than they actually are about what you are going through.  So why do they even ask? Who even knows at this point?

I know this is probably more reading than you anticipated, so if you are still with me, thanks.  I am bringing it home now!

Life is full of truths that affect us in positive and negative ways, so we need to FIRST be willing to accept both in our own personal lives.  Then, we need to be supportive of other people when they are going through something because we might be instrumental in helping them come to terms with and accept a truth.  The hard part is being willing to listen to the excruciating and ugly parts of the story and putting yourself in those shoes.  My personal belief is that all of this is the reason people offer up their well wishes and refute the truth.  It must be close to impossible to imagine what it is like not having a memory.  I wouldn’t have been able to imagine it 5 years ago.  I doubt most people want to imagine life without remembering it because they know it carries an uncertainty of what you have done and it affects the perception of time passing.  It’s an overwhelming concept when you are living it.

All of us need to work harder to understand one another because no one deserves to feel unheard or invalid.  We have to stop trying to solve each others’ problems and learn to comfort and encourage each other.  So often we share our pain because we just want someone to acknowledge that we are in pain and that it is normal to be upset about it.  Some people need you to just commiserate with them.  Now, I am NOT saying spend 5 years doing this for one problem, but if your friend is upset over a cancer diagnosis, STOP TELLING THEM THAT EVERYTHING IS GOING TO BE OK.  First, you don’t know that.  Second, they are telling you because they need the reassurance that their pain is valid and unfortunately that means feeling their pain and listening to them talk out their fears or concerns.  Unless you are an oncologist who specializes in what they have, you should concern yourself with their emotional health and support.  Cry with them when it is bad and there are no clear answers (yes, it hurts and is uncomfortable, that’s adulting) and celebrate every tiny victory with them.  It isn’t your job to cure them or predict the future, just be a friend or if you can’t then just keep away from them.  You are toxic and I am sorry that no one has ever shared with you.

I know this is probably rambly and here and there, but my memory is making it harder for me to stick to a point.  I  have been trying to shorten my blogs because I am in a holding pattern medically while my health is deteriorating and presenting some surprises.  It gets hard to think clearly for longer than a few minutes at a time.  Still, the best part of this is that I am a living testament to the treatment of how people with hidden illness are often treated and how one person can use all these great social media platforms to just share what life is really like.  The good, the bad, the ugly, and the downright gross.

The Monkey: Background

It has been a long time.  I would call it my sacrifice but each of us has given up something so that my daughter would have a place to sleep that was safe and loving.  Most people don’t know or understand the actual events that led up to me living with my parents.  Many people assume I am spoiled and have lived with them all along.  Many people think that it is because of the brain surgery.  It is actually because I was missing so much work from my sinus problems (had to get an operation) and the problems following THAT surgery, (had to get tonsils out ten months later) and I wasn’t able to cover my bills because I missed too much work.  I worked and went to school, so my daughter was already staying with them.  I moved in and about a year later got into the car accident that would change my life.  I stayed with them after the throat surgery because I was determined to finish school.  I had 2 semesters before I for my Associate’s and left for Kentucky for my Bachelor’s and Master’s degrees.

It was really a blessing to already be here when I had to get the brain surgery because I wouldn’t have been able to empty out an apartment in that condition.  It may not be the most ideal situation, but I have a safe place for me and my daughter.  She has been the reason I have accepted my circumstance.  I can’t do better for the both of us right now, so even if my pride took a hit, became a vegetable, and died in solitude a year later, I will make choice to do what is best for her safety and growth.

I am not ashamed to live with my parents.  Quite proud actually.  They have sustained a lifestyle that is capable of supporting themselves as well as us and they do it willingly without making us feel bad for needing help.  I am proud that my parents love me enough to give up space and quiet.

However, there is a part of me that just wants to return to that time I had a life and my own things.  My daughter has two and a half years before she turns 18.  So, I am giving myself that much time to put my life back together and be willing to start over.  While I want to get away, it’s more from the factors outside of my family that are stressors in my life.  I have issues with my family here and there and my daughter is so ‘teenage’ that I could just die of frustration, but I want a quiet life.

I don’t know that this is the thought pattern that people imagine when they see someone in my position.  Or any disabled person.  We actually just want independence and freedom to rule our own roosts.  We want to be the creators of the calm around us and enjoy the art and color schemes we decide on.

Right now we are trying to figure out how functional I am.  Can I get and sustain a job?  So much hinges on this question.  If I can’t, then I have to wait for the disability process to roll along which could take until May 2019 just to get a hearing date.  That could mean no money before October 2019 IF I am approved at the hearing.  If I am deemed able to work, then I will probably stop all of my treatments and rehabs.  I can’t work a full time job and have full time doctor appointments.  However, the OK to work means that I can have an income again.

I dream of having a job.  Feeling that twinge of disappointment every time I look at the taxes they take and yet still, knowing I am about to treat myself to a nice dinner.  Then going home to my own place, where I make up the rules (there are no rules), everything is sparkly, and I can sing at 3am if I feel like it.

I hate waking up to this reality, so that is why I often look forward to bedtime.  at least in my dreams my life is normal and I don’t have anything but the normal worries and cares of someone my age.

Illness, pain, and injury can all steal your dreams from you.  Chronic or acute, your health condition can force major life changes on you that you didn’t even know were possible.  It’s hard for me to figure out what is the worst time period of my life, but this situation DEFINITELY is the worst of my 30s.  It basically trashed my whole life.  Which leaves me to wonder where I go from here.

I don’t recall a time period in my life where I was without a long-term plan for so long.  Even if the plan changed, I had one.  I look out at my life and instead of seeing a thriving land of awesomeness, I see a barren landscape in hues of grey with no point of interest.  I have no direction.  I am not sure what I want to do.  I usually ask other people, “If you could only do one thing for the rest of your life, what would it be?” and I even asked myself that, which is why I went back to school for music.  Now, my answer is probably closer to, “I don’t even care as long as it doesn’t hurt,” because music is no longer realistic.  At least not at this point.

It is quite possible that I will have to do some type of menial labor that doesn’t pay much.  I can handle that.  I feel like I would be able to deal with it because I know that it isn’t the job, it’s how awesome I am at it that matters.  If I am earning my way through life, then I am doing it right!  I hope that whatever happens I handle gracefully.

I say all of this to remind you that you are not the only one living in a situation you want to change and that most other people can’t imagine what you go through to get through your days while holding on to your dignity.  Sometimes we just play the hand we are dealt and try to break even and if you are trying, then you are amazing because so many give up.  It seems frustrating, hopeless, cruel, and unfair to be thrown into a circumstance or feel trapped in one, but just know that you are not alone.  Lots of us want to change the situation we are in and we are trying to figure out day by day how to do just that.

 

Every Day Is Monkey Day

Imagine you are at work laughing and talking with a coworker you have had for years and he brings up how he broke his leg six months ago.  You have zero recollection of this, but you just go along with everyone because either you don’t remember or there is an elaborate plot unfolding around you.

Later you go meet friends for dinner and one friend brings someone you have never met…but she knows your name and about some random fact only you would tell someone.  You ask a lot of questions but nothing is making any sense because this girl is nowhere in your memory.

As you leave and walk to your car you encounter a couple who brighten up as soon as they see you.  You wonder what they are so happy about.  They tell you about an interaction you had many months before and update you on a condition that you have no idea about.

When you get home you brew a pot of coffee and sip and think about how these people know you but NOTHING about them and you are beginning to question the reality of the entire night.  You look at whether you have taken your meds on schedule or whether you have eaten, gotten enough sleep, wore your scarf too tight.  It actually doesn’t take much to begin a downward spiral into the dark hole of our own existential terrors.

Imagine this happens frequently.  You begin a cycle of questioning the reality and validity of things and people.  You spend time not going out for fear that someone else will recognize you.  Eventually, you start to wonder if you are meeting people and completely forgetting them.  If that is the case, are you also doing things and forgetting them?  What have you said that you can’t vouch for?  What have you seen that you may never recall?

Oh, man, the possibilities are endless.

This is what happens to me quite often.  I deal with the public and so I encounter a lot of people.  I mostly only remember the ones I knew prior to the accident.  When it happens, usually I am caught off guard by someone who says my name.

When I look up, some stranger is there with a giant grin and quickly closing in for a hug.  My current situation does not allow me to violently recoil from people, so I end up in the awkward embrace of a stranger who feels like we are friends.  Inevitably, they bring up some “thing” we talked about last time we met.  Then, they have the nerve to look offended when I ask who they are.

Like they are so special that they can jog a memory that doesn’t even exist!  When I remind them that I have memory loss, they counter with something awful like, “don’t we all?! I lost my keys this morning!”  That’s nice Marcy, but I LOST 3 YEARS OF MY MEMORY!!!  Then they get to the dreadful business of explaining the entire interaction from our “alleged” previous encounter. They bring up useless facts like the earrings I wear every day or the types of weather outside.

Then I steadfastly refute any claim of knowing them, their faces turn to a dejected sadness.  Almost like I said they were a nobody.  I suppose it could be taken as you are nobody to me, but that is just because you aren’t a part of my life.  Some people get upset because they think I am being mean.  I am not sure what happens to them after that because I forget a lot of what goes on.  (I had to ask my daughter for info to write this…because I FORGOT!)

My daughter tells me that they come to her hurt and confused as to why I don’t want to talk to them.  Apparently, telling someone “I have poor memory and I probably won’t remember you” isn’t enough.  I have to be the villain and look bad when I make good on that information and have no idea who you are.  Thank you.

On the inside, I feel like my timeline has stopped.  I feel like I live the same day over and over again with minor differences.  It frightens me to think that there is even the possibility that this could be a lifelong problem.  In my head, it might always be 2016.  I may always be 34.  The problem is the dissonance created when the world around me disagrees with everything in my brain.  I feel like I am playing a game of pretend and my life is at stake.

I am glad that my neurologist agrees that this is more than an issue of forgetting when I placed my phone.  In the end, this could be a very serious diagnosis once we look a little closer at my brain, but knowing that I am not crazy and that there is nothing that I could have done to prevent this is reassuring because it lets me know that my brain is malfunctioning and not the people around me (mostly).

I can only imagine the frightening spiral of uncertainty that people must go through when they don’t have adequate medical care or a strong, advocating support system.  I can see how easy it would be to slip into a state that prefers to accept what is in the brain as opposed to what is in the real world.  I am no doctor or scientist, but I live on the precarious edge of reality at times and it is scary to think I might fall one day and nothing is familiar anymore.

For now it is a nagging thought and I hope the tests put some of my fears to rest.  However, this post wasn’t really about me.  At least not my current self.  In the Before Time I was the person who just said things to hurting people to make myself feel more comfortable.  It was never really about their situation, it was about how their situation was affecting me.  Now that I am on the other side I realize what a disgusting human being I have been at times.  I didn’t do it on purpose, I just didn’t know or care.  I try not to get too mad at people about it, but it gets to me at times that people who aren’t 15 or 25 or 30 are saying such insensitive things to me.  Who else are they treating this way?

This is not a time to be ashamed of being a jerk or ignorant, it is the time to just learn about our conditions so that you aren’t making US feel like the crazy ones when we have reasons to be how we are.  It’s time to educate you children on the extremely wide range of disabilities from the most visible to the invisible.  We have to make this world a little more manageable for our kids, some of whom will be born healthy then at some point in life be stricken with injury or illness.  Wouldn’t it be great is they were never treated different?  If they had the amenities of every other child?  Most of all, wouldn’t it be great if people respected your child’s diagnosis without questioning whether your child isn’t just “stupid” or “slow”?

I can’t imagine having the problems I have now as a child who doesn’t understand the world as much and growing up with people not believing me.

Yet here I am as an adult, and people don’t believe what I am telling them.  They all just think if I had some kale, everything would work out.  So, if you happen to be in a similar, awkward place in life where you don’t remember much of anything, I understand your frustration.  Just know that it is usually not the person’s fault and often times you have to be very specific with a person, like this: “It is really nice to meet you again, but remember, I won’t remember you next time we meet and I will wonder why you are weird.”

If someone asks you to remind another person of something, tell them NO!  remind them of your memory and refuse to be responsible for their messages.  If someone tries to get you to commit to something in five weeks, tell them send you an email with an event invite or you will probably book that day for something else.  I do that all the time.

Most importantly, don’t ever blame yourself for something that you really have no control over.  There are many diseases and conditions that are caused by excess weight, poor diet, reckless behaviour, and sedentary lifestyle.  These are the diseases that you should look back on your like and ask what you could had done to prevent it and how you can treat it.  The type of memory loss I am suspected to have is probably cause by my brain drooping out of my skull for so long.  We don’t know how much brain damage it has caused yet.  There is nothing I can do right now but wait and hope for the best and prepare for the worst.

Everyone else, be kind.  life is too hard and too short to treat other people poorly.  Especially when you don’t know the circumstances that made them who and how they are.  Freely give love and may that love be returned to you and your family when you need it.

The Monkey Power

There is so much that goes on in the life of someone with a chronic illness or a disability.  There is the normal life stuff plus the added bonus of whatever malady is mingling with my body.  If your situation is like mine then there is a period of time that involves a lot of adjustment and can be extremely difficult.  The fact that I stopped working really weighed heavy on me after my initial recovery from surgery because something was still going on and I had too much free time to think about how horrible my life felt and how I would never be able to be what I wanted to be.

This period of time was difficult for many reasons, but mostly because I was not used to feeling victimized by my own body and answers were impossible to come by.  That is when I truly learned that I have to advocate for myself all of the time.  I have always stood up for myself, but rarely would I argue with a doctor; someone I consider to be a learned professional.  With my family by my side, I began questioning doctors, I changed my PCP, and I started taking the lead at my doctor visits.  I come in with an agenda, questions, and medical studies if I really have a point to make.

My change of attitude led to the doctors listening to me and to things getting done.  I got the sleep study and all of the exams and tests.  Now I am at the brain center here and I am receiving some top medical love.  I advocated my way to the doctors I need to see.  However, it took over a year, so please be patient.

In the meantime, I was introduced to the unite@night walk that Chiari and Syringomyelia Foundation (CSF) have each year and I volunteered to be the chair for the walk for 2016.  IT WAS SO STRESSFUL!  I loved it!  While it wasn’t huge, I was able to get some folks there.  I am again the chair and one week out (at the time of writing) from my second walk for CSF with way more confidence than I had last year.  All of my goals are a little larger and we are getting there!!

The more important thing is that this is giving me a platform to stand on and spread awareness about something that is so important to me.  It feels like I talk about Chiari every time I leave my house and that feels great because people need to be aware that it exists.  This also gives each of my doctors a glimpse of the life of a Chiari patient and so I am spreading awareness through the medical community.

It breaks my heart to know that there are people out there with the condition that I have and they are suffering because their doctor won’t order a simple MRI or add up all of their symptoms so they just live in misery.  I believe Chiari takes an average of 5-8 years to properly diagnose because it is frequently misdiagnosed (prolly need to look up that stat and see if it has changed).  This is why advocacy and awareness in the medical community is crucial.

Even if your struggle is not the same as mine, think about becoming more outspoken about it because people need to know the we are humans who are differently-abled in whatever way but that doesn’t mean we should be treated differently or poorly.  Use your intimate knowledge of being deaf or in a wheelchair or in constant pain to educate someone who may not understand your condition.  Of course not everyone is going to listen or care, but most people are surprisingly attentive when I explain Chiari and I usually only have to list a few facts for them to get started asking questions.  Please, if someone asks a question that seems obviously dumb, answer it anyway as best you can.

Those of us who are comfortable speaking up are ambassadors to the world for our conditions and it is up to us to get the word out to make it easier for those coming behind us.  We want to get people interested in funding research or going into the medical field to become researchers to help us find a cure, a treatment, a medication, a device, or whatever can help with restoring normalcy and autonomy to people’s lives.

Advocate for your children when they are in school so they can get the best education.  Advocate for homeless vets, abused pets, environmental issues, or whatever is close to your heart.  Not only will you be able to fill some free time that might be spent “plotting”, but you will be starting the change that you wish to see and should you keep at it, you will see results.

Most importantly, you find a sense of purpose in a place where you previously felt helpless and that is an amazing feeling.  Empowerment is a tool we all need to learn to pick up and use to our advantage because it will help us see the changes we desire.

The Monkey, Life

This has been a difficult 7 days.  Getting our washer, dryer, and dishwasher has now become an ongoing nightmare.  My uncle died.  A friend’s baby died.  Another friend’s brother died.  My sister is not feeling well.  I mean just a mountain of pain.  As someone who desires to help, there really isn’t much I can do right now.  I am in the place where I have to experience the pain that I often deal with in others.

The best part about all of this is the birth of a little girl to another friend of mine.  I am not a “baby person” but in these times we celebrate every single thing that we can because we need every ounce of joy we can find.  I suppose at times we must shed our tears while we smile and that is ok.

The next few days will fly by.  Funerals I can’t attend, a memorial to plan, a new life to welcome into this world, phone calls, paperwork, cards, and so much more will happen.  I know that while life moves on for most of us, a few of us will be stuck in moments of time experiencing the surreal feeling of unexpected stillness.  My aunt will have coffee alone, but I expect for a while she will make enough for two.  My friend will walk up her stairs every night and come face to face with a baby-less nursery.  My own mother will only have one sibling to speak of in the present tense.

While I was going through my brain stuff, my uncle was going through his cancer stuff.  Multiple myeloma.  A piece of me feels awful because my mother made the choice to be here with me instead of spending more time back East with her brother.  As a mother I would definitely make the same decision in that circumstance, but as a girl who has lost her brother I know how badly she wanted to be there to support him.  I am grateful to have a mother who is willing to sacrifice almost everything to help me.  I am glad that she made it back out there and was able to spend time with him before he passed.

What does all of this have to do with Chiari?  Well, life doesn’t stop happening because we had surgery or can’t get up some days.  Just as I affect my family, my family affects me.  I don’t wish to have a headache AND mourn, but I don’t really have a choice.  Chronic illness doesn’t really take a day off.  Trying to make sure that my emotional turmoil doesn’t translate into increased symptoms is a mixture of therapy, coffee, yoga, the gym, cartoons, music, and blogging.

If you have a chronic condition just make sure to listen to your body when you are going through ANY difficult situation.  Dealing with emotional pain takes a lot of energy and there is nothing wrong with handling it in whatever way is healthiest for you.  When I got the news, I had about six hours before I was emotionally run down and I turned off all of my devices , put my CPAP on, and went to sleep.  I woke up, went to the gym, then went back to bed.  Did I miss phone calls and text messages?  Sure!  Did I get back to everyone when I was well rested and emotionally available?  Yep!  Everything survived when I took a break for myself and NOBODY was upset.

If you are just peering into the lives of the chronically ill and pained I invite you to imagine how the world would go on if your leg broke.  Now, imagine that everyday except maybe your leg broke off and now you have some medical issues.  You may have also developed depression.  Also your bladder doesn’t work right.  This is your new life.  You get to keep all the hassles of your old life (bills, mortgage, cooking, taxes) but now you get to marry them to all of your new problems.  Also, you still have the unexpected auto breakdown, dead fridge, and air conditioning troubles.  Then…BOOM!  Tragedy!  On top of ALL that other life stuff.  You would want to lock yourself away sometimes.

It’s alright to take time for yourself when you need to.  People may think that you are lazy or disinterested, but those people can’t appreciate what you go through on a normal day, let alone a day when something is very wrong.  You know your true intentions and that is all that matters.