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’s Anxiety

*WARNING: Today we talking about certain church folk behaviours.  If you are easily offended, please get thicker skin and come back and read this.  If you see yourself being described, don’t think you can’t change.  If this happens to you, my warmest condolences.

Today was all about anxiety.  I must have slept wrong because I woke up and the world was my problem. I found myself rehearsing what I would say to people at church when they asked me how I was doing.  It is inevitable that they will ask.  I know they have good intentions.  Still, I have grown weary of choosing whether to lie and feel a bit guilty or tell the truth and listen to any number of thoughtless responses.

Person: Hey, Michelle, how are you feeling today?

Me: I have a headache and I feel a little sick.

Person’s probable replies (replies I have actually received):

• Ugh, I didn’t eat breakfast and I feel pretty sick too.
• Have you tried kale?
• You probably just need rest.
• Have you considered maybe it’s your hair dye?
• Man, my head hurts too. Want an Advil?
• You have to pray more and believe harder.
• Have you tried this television show?
• Have you taken *insert medication here*?
• Have you been to a hyperbaric chamber?
• You know, juicing allows nutrients to get right into the brain.
• Have you looked into Bikrim yoga?
• Have you tried massage?
• Himalayan salt lamps.
• Krantom
• Totally raw foods.  The carcinogens from heat are oxidizing your brain cells.
• Have you tried these socks?

Person rarely (if ever) replies: That sucks.  Sorry you are going through this.  Let me know if there is something I can do for you.

The feeling got out of hand this morning.  I drank my coffee, took my Lexapro and the Valium.  I hate taking the Valium before church, makes me kind of check out, but that’s what got me out of the house.  Then I spent the entire morning avoiding people.  To the few people who managed to see me and ask how I was doing, all I could tell them was that I was living.  That seemed as truthful as I could be without being a wet rag about it.

I understand that my discomfort makes other people uncomfortable.  I look normal, so it is already hard for them to imagine me in sever pain unless it is really showing on the outside.  I normally don’t leave the house when it is life that because be then I assume all people are stupid and I hate anything that does not offer me relief.  Pain problems!

Then I wonder, at what point does it become toxic for me to stay in an environment that can’t comprehend what I am dealing with?  I don’t think that anyone has any malice or negative thoughts when they say these things.  I think they are trying to diffuse a situation that they are uncomfortable in.  They want to offer help so they don’t have to suffer the feeling of utter uselessness.  That is a hard on for many people to grasp and understand.  I see my own family deal with this on the constant basis for over two years and I feel awful putting them in the position to be silent witnesses to my misery, but they encourage and support me.  They don’t try to fix me.  They accept that they cannot comprehend what my headaches feel like.  They don’t compare them to a pain they once had to show solidarity, they offer me an ice-pack and a ginger ale.  They didn’t minimize the stress I felt when I lost my wallet every 9 days.  I was a mess.  They showed me solutions and helped me pick a Bluetooth tracker so everyone in the family can keep up with it.

I get that the public doesn’t see what happens behind the closed doors.  Even more, I see that I used to be one of these very people.  I now understand just how toxic this is for anyone to go through.  Not being acknowledged is dehumanizing.  It is someone who is supposed to be my friend or my fellow Christian telling me that my problem that permeates my life is no bigger than their headache or when they lose their keys.  They see such a tiny area of the picture, but who would want to share more with people with this attitude?

So then the question arises, how do I continue my Christian walk when this is what I feel like I am up against?  I don’t believe another church is the answer because the general public has very limited knowledge of general neurology, let alone memory types, functions, and dysfunctions, cranial nerves, cognitive function and dysfunction and the emotional implications of dealing with neurological issues.  They want to slap a prayer bandage on it and believe that God is going to heal it tomorrow, never thinking that maybe that wasn’t His plan at all.  At this point it has been three years since the begin of my memory and cognitive decline began.  Being able to recover from it completely would be a for real miracle.  Do I believe it CAN happen?  Of course!  That is the hope, that is what the praying is for.  Do I also believe that God is still God if the healing doesn’t happen?  I sure do!  That just means there will have to be a bigger change in me.  Just so happens that is scary and I don’t look forward to that type of change.  Yet, look how far I have made it already!

I honestly believe that many Christian have gotten to a place where they expect God to move the mountain when God put it there to show you that you can climb it.  Of course there is a blessing in either scenario, but at the most difficult point to reach, the summit, you are closer to God and the lessons you learn along the way are invaluable.  I think leaders in out churches need to be realistic and really express to people that we bear burdens.  We don’t compare them, we don’t off-load them onto someone else, and we certainly don’t critique them.  Ministry is not the position of the commentator and often it is not the position of the counselor or the doctor.  It is the arms that embrace, the shoulder to cry on, the ear that listen, the mouth that encourages, the hands that serve, and the back the carries the burden.  None of that involves kale.  None of it involves remedies or old wives tales.  They are all ACTS OF LOVE.

Full disclosure: I am a minister.  It’s probably in a blog or two somewhere, but I tend to keep this about my illness and not my belief system.  I mostly deal with families after a traumatic or tragic event.  I have been at the hospital with a family upon the death of a family member or after an accident.  In the position I am in, I have nothing but the most delicate words for a family, and often the less, the better.  I am there to support them.  I get them food, water, medications, sweaters, or whatever it is they need to get through the initial grieving process and then I plan and oversee funerals and memorials.  I can’t imagine myself telling one of these families how much more sad I was when MY brother was murdered.  That would be outrageous.  Absolutely disrespectful.  So I don’t come from a place where I don’t have to watch what comes out of my mouth.  I acknowledge every emotion that each family member feels because they are all valid even if I don’t understand them.

People feel.  That is what makes us beautiful creatures.  Sometimes our feelings are ugly, but we have to be able to understand that that is a part of the human condition and that it is ok.

If you made it this far check out my visual expressions of Chiari Malformation with a quick trip to Chiari Conversations

The Mind Of The Monkey

This morning I woke up from a wonderful dream to the reality that I now face daily.  I took off my CPAP mask and put it on my pillow.  I leave it there so I remember to put it on at night.  I picked up my phone and hit the home button and squinted to see the month, day, date, and year.  I knew I would look for this very information at least four more times before I go to bed.  I downloaded the nightly info from my CPAP and got coffee.

This is the first ten minutes of every day.  Sometimes I feel bad because I can’t remember to pray first or drink a glass of water before my coffee.  Luckily, the feeling fades quickly as my brain jumps to something else.

This morning, it was different.  I couldn’t shake the feeling that I just wanted to go back to sleep and be in my dream.  There, I don’t forget things and my head never hurts.  I am able to work and I enjoy the life that working affords me.  As I brushed my teeth, I gazed at the purple circles around my eyes (they always appear during a headache) and I pondered how many layers of foundation it would take to hide them.  It took 3 in case you were wondering.

I searched for something to wear and just grabbed pants out of the clean clothes basket.  I used to care about what I wore and how it looked, but I just want to make it to church and I get frustrated trying to decide between outfits.  Usually, I just wear black with black and it matches and I am done.  I don’t carry the memory of how I looked yesterday so it doesn’t bother me.

I put conditioner on my hair and scrunched it.  I was ready to go back to bed by this point because my head was screaming.  I wanted to get to church though because I enjoy it there and I have to get out of the house to somewhere besides doctor offices.  As I applied layer upon layer of foundation to hide my growing eye-rings, I remembered the freedom that I had felt only an hour before.  The accident never happened, the surgery never happened, and “Chiari” was nowhere on my radar.  I was just enjoying my life with my daughter in our home.

When I walked into church, I could barely keep it together.  I look put together.  I walk with confidence.  Yet I couldn’t even fake a smile.  I knew my face expressed the very pain, physical and mental, that I was experiencing but I couldn’t change it.  I felt broken.  When people asked me what was wrong, I told them I was fine.  I lied in church.  They haven’t understood for two years, how are they magically going to understand today?

In my head it is 2015 and I can’t seem to move my internal clock forward.  It is driving me insane.  Unless you are really self-aware, you probably can’t understand why this is so bothersome.  I can’t remember what I did yesterday.  I have been thinking my daughter’s birthday is in a month forever.  I feel like I came home from surgery a few weeks ago.  Everything that I CAN remember, feels like it JUST happened.  I can’t place it on a mental timeline.  Yet, I remember when I could recall the date upon waking up.  I remember learning every zip-code in the valley and keeping up with them as they changed and increased.  I remember being able to recall every minute of my day in excruciating detail.

So here I am.  Aware that life is going on around me, not even being sure of my own level of participation because I don’t remember.  Holding on to a piece of a dream that I have been replaying in my head for a whole day.  Me and my daughter, running up the stairs of our home, enjoying the breeze floating in from the open windows, being free to live outside of the constraint of a broken mind.  Weighed down only by the gravity of the Earth around us, but buoyed by the excitement of life and newness.

Tonight, I look forward to visiting anywhere that allows me the freedom I once enjoyed in my body and mind.  Still, like every other morning, I will wake up to a reality that binds me and has trapped my brain.  I will go through the same motions, probably without realizing that I am doing it.  I will put on however many layers of makeup to hide the circles of pain around my eyes.  I will smile for the sake of not having to answer the questions of people who will never understand that I am dying inside and I don’t remember how to live.  I will gleefully await the hour when I will fall asleep, hoping that I will again get to live the life I once enjoyed or at least, I won’t have to deal with the life I currently lead for seven or eight hours.

Just so you know, I am not just stewing in a pot of self-pity-soup.  I am currently researching memory specialists in my area so that I can try to find the specialized care that I need to hopefully find a treatment that can help me regain the usefulness of my memory.  I have just been trying to find a way to put into words what it is like.  This is nowhere near adequate, but I hope it offers some insight into the seriousness of memory impairment.  Hopefully, I can get help and then help other people too.

If you are going through a problem that is affecting your mental health, please make sure that you seek counselling.  I see a psychologist and a psychiatrist and there is NO SHAME in seeking treatment.  If we could fix all of our issues alone we wouldn’t need cardiologists and such.