Monkey Resigned To Being Determined

I have never seen myself as a strong person.  At times I have been determined and at other times I have been resigned.  I can see myself in either position at any given point in my life.  It has been the driver of the ups and downs in my life.

As a child, I was determined to do whatever it took to be able to take care of myself.  I learned how to follow orders, how to be a sycophant, how to be cruel, how to look innocent, and how to plan the long game.  I breezed through my teen years, high on everything, with great grades and two jobs.  Life was awesome.  I had a goal and I was reaching it while having the time of my life.

I had a steady job, was getting ready to go back to finish my associates in English, and looking to purchase my first house.  Then, one morning, my brother was murdered.  That day I became resigned to living.  I wasn’t sure how to navigate the world without him; he had always been there since I was born.  It has almost been 20 years, and it took the first 10 before I started getting it back together.

I was working and shared an apartment with my sister, who raised my daughter (I am not even gonna lie and say she watched or babysat) while I was working and trying to get back to getting a career.  I lost my job, but that made me more determined to get a business license and get myself back together.

Learned how to make jewelry and after 18 months of searching, finally found steady work with great benefits.  They paid for me to go back to school.  I went for vocal performance, and I loved working and learning and building myself to achieve my bachelor’s in Music Therapy after two more semesters.

I had to get the brain surgery and the neurosurgeon worried about me singing opera again, but we were hopeful the surgery would heal well with few complications and I could get finished with school and go to Louisville.  So I followed the doctors orders, I eventually went to excruciating physical therapy.  I ate a high protein diet, I went for a little walk everyday.  I read and wrote and did puzzles and games.

I don’t know when I realized that nothing was improving.  At 6 months the neurosurgeon was concerned enough about my memory loss to send me to the brain center out here, but it would take over a year before I actually made it.

Life, kept happening, everyday, all of the time.  The weird thing was that I didn’t remember it happening and holidays and birthdays popped up out of nowhere but the passed with no memory.  I ended up seeing a neuropsychologist and he gave me his opinion; I am above intelligence, I have some trouble processing data, my memory is crap.

When I read the results of the test, I cried.  While indicating something may be wrong, I was given a set of recommendations I had to spend a year filling to get to the brain center.  I knew when I read the results that I was going to be put through the dog and pony show.  Slowly, I made it to over 17 doctors, at least 6 blood draws for specific testing, SO MANY MRIs, 2 EEG sessions, three sessions of conductive nerve testing (medical electrocution, though it isn’t THAT bad…the first time), an endometrial biopsy, so many urine tests, meds meds meds, over 200 cases of ginger ale, and who knows what else.  I became resigned to being a professional patient.

When I finally made it to the brain center, I was informed that I was not an average patient and was not presenting with symptoms that really went along with the Alzheimer’s or Parkinson’s so maybe this wasn’t the best place for me to get care.  This was THEIR neurologist, and the neuropsychologist agreed.  I lost even my resignation that day.  I was ready to just give up and exist, whatever that meant.  I had a followup with the neurologist but I didn’t even want to go.  Then I was told I would have a different doctor and I couldn’t see myself explaining all this to another doctor.

I went to this appointment because it was important to my family to try everything.  Turns out I got the head of the clinic.  The top guy.  The guy who listened intently as I expressed my fears about being told I was just forgetful or him not believing me and I just asked where I could go for help.  This guy LISTENED to me, and then asked relevant questions that no one ever thought was important.  Then he talked to my mom and sister and got their input on what they thought was going on and how it looked to them.  He restored my determination because figuring out what was going on seemed just as important to him as it was to me.  He also had a lead to go on: Seizures.   Family history, brain out of position for over a year from car accident, large chunks of memory gone.

Left that visit feeling like my crops had been harvested, the animals fed, and the front lawn was freshly cut!  He is willing to go there with me and he believes what I am saying about my memory loss.  Ordered tests and therapies (I am in the process of scheduling all 3 of them). I am currently 28 days to my visit.  7 days until my MRI.  Praying we don’t order more tests.

Right now, I am slowing down a bit, but I am determined to find some answers.  Even if the answer is ‘unknown cause’, well that is still enough.  I hate to think I could get discouraged at this point, but here is the thing, I know that I can.  Just getting to this point has taken so long, but I wondered along a lot of the way.  I lost steam along the way.  I am blessed to have a family that carried me through those times so I wouldn’t give up.

The worst of it is, I don’t think that most people who know me really know the depths of depression that I spiraled into.  It has taken a year of therapy just to start to become OK with not working.  My parents carry my ENTIRE financial burden.  The people we know and are friends with don’t know how much they have sacrificed for me and my daughter.  My sister babied me for MONTHS after my surgery because my recovery was hard.  People don’t see the work she put into holding my cup up because it was too heavy for me.

Sunday at church, a lot of people pointed out my cane and were surprised.  Although they see me every week, they have taken no notice of my physical and neurological deterioration.  I try to keep my business private and the church is not entitled to my health status unless I am contagious.  A lot of the things people say to me really are thoughtless and damaging.  Not on purpose, but because everyone lives out different experiences and at times we try to relate but the connection is missed.

I say all of this to let you know that if you are blessed with a body that works, don’t question the body that does not.  Just say something kind and positive.  It could be a compliment on their hat, or a comment about odd weather, or ANYTHING but what you suspect is wrong with them.  They need people to keep pushing them in the area of determination and not being resigned to that girl who complains (after I ask her how she is doing and she gives me an honest response and it is one of her BAD days) all of the time.

If you are in the position of trying to stay determined but people are bringing you down, don’t be afraid to tell them that you need positivity.  Even in the bad things we can find some good in the situation or outcome if we look for it.  Try not to be mean, but if you are, don’t be ashamed to apologize.  We want to spread awareness but sometimes we just want to be left alone and we let loose on someone.  Apologize.  They probably had NO IDEA what you are going through.  With that apology, add in anything the two of you can do in the future to avoid conflict.  Educate them on dealing with chronic illness, chronic pain, and and other type of disabled person so that they CAN be encouraging and maybe give someone that push they need to stay or get determined.

If interacting is just going to be problematic, just say “good morning” and keep on going!

Sometimes you can just see that someone doesn’t feel like dealing with anything, even kindness and concern, as they DO NOT block pain.

Go forth and be loving!

Monkey Support System

I have such a wonderful family.  I always knew they were cool, but I have seen how every member of my family has sacrificed something to take care of me,  Many sacrifices are long term and continual.  Sometimes a really fun thing has to be skipped on my account, but they are champions for dealing with it the way they do.  I know a lot of people who “know someone who cares for another person” but most of these people don’t see the day to day dealings and frustrations that families face.

Thought I was trouble before?  I am no longer allowed to drive.  In the last 7 days I have had four doctor appointments, a visit to the ER for my daughter, an allergic reaction to medication, and two pharmacy visits.  That is all stuff that my FAMILY had to drive me to!  No one complained when I frantically ran around the house needing to get my daughter to the ER to close up a laceration from a stray burr on the oven, they knew I felt helpless because I couldn’t even help my own daughter because of my health.  My stepdad hung out in the waiting room while I sat with her letting her squeeze my hand.  We went home after two, and he had to be up in 6 hours for work.

I feel unworthy of such love for me and my child, but my family shows me constantly that our love as a family will rise to any occasion and meet it head-on.  While I feel like so many things have been taken away from me, I have been given enough support to cover every loss.  I count myself blessed to have such a team of people around me who keep me going and carry me when I am too worn down.

THIS is a Support System.  It isn’t just my family, I have friends I can call, associates, and complete strangers who are willing to assist me.  Yes, I am a grown woman with a teenager, and my parents take care of me and my daughter.  I used to hate it until all of my money ran out and I could no longer give them money, or pay my own phone bill, or buy socks.  I actually ask for these things now and it has made me a much more humble person.  They could have forced me to give up my own phone bill and get on their account, but they understood how it would hurt my pride and they bit the bullet.

By NO MEANS are we rich.  We know how to be frugal.  I know how to cook from scratch which can save a good amount of money.  We save money every way we can, and we still get to go to the movies and shop, so, it’s a balance.

So, this is what breaks my heart; people who go through chronic illness or chronic pain alone or with toxic people around.  This is something I see in some friends of mine and in groups on social media.  It is close to impossible to walk away from whatever situation I find myself in if I come down with a case of unexpected neurosurgery or incapacitating pain.

Some people get SSI or SSDI right off the bat, but many of us wait longer.  It has been over two years since I first filed.  I am waiting for a hearing date.  Meanwhile I am making no income.  So, I know there are others out there like me who find that the resources run dry.  I assume only a portion of them have the luxury of moving back home.  Some of the people I know who chose this option deal with family who almost feel obligated to let them stay but are not welcoming at all.  A few are acrimonious.

A few have spouses.  Some of those spouses try their best to understand and sympathize the issues associated with the chronic life.  However, some spouses are a stain on humanity and do not believe or tolerate the disability.  So, you have to live in the slim space of being sick without it bothering the person who finances your life and medicine.

There are some who have nowhere to go.  They lose everything in their life, they lose themselves in the pain, and life can take some weird or even dangerous turns at this point.  The streets are no place for anyone.

This all begs the question, “what do you do about it?”

I mull this over every time I go to the doctor and leave with no answers.  I consider it when I am in the MRI housing.  I ponder it when I am on the phone for three hours trying to find a referral that got stuck in Ohio and was not sent back to Las Vegas.  I marinate in it when I am in the ER and I see people there alone, while I always have one or two people with me,

I look at my church as an example in this area.  One of us from the Helps ministry will be there with you at the hospital.  Usually for as long as it takes.  Might have to sleep in ICU for five nights.  Might have to go to another state and care for someone.  You might have to go be there during the dying process.  you may have to feed someone who is injured or otherwise incapacitated.  There is this shared responsibility for the welfare of each other that I don’t know if it exists in other churches or other types of communities…but it should.

Las Vegas has a lot of people who come out without family and they need support in their lives.  When things happen to them, one of us will stay with them and someone else will help arrange for family to get here and get to the hospital.  If I  have to stay overnight with someone, there are shifts of people who bring me food or whatever I need.  It is beautiful to watch such a large response of love toward a single member of the church because we are all that important.  Everyone gets that treatment, even new members, and at times non-members.  People deserve kindness.

I challenge you to be more supportive of the people in your life that are going through something you don’t understand.  Most of the time all you can do is listen and bring them things, and often that is what they need.  They need to be heard and have their feelings (WHATEVER THEY ARE) validated so that they know that someone cares.  Sometimes that means helping them meet a need.  I know that no one wants to part with their money, but sometimes people need help with simple things like toilet paper because their meds cost went up.

The best part about a good support group is that EVERYONE is willing to give as much as they can when needed, even if everyone doesn’t have a lot of money.  Supporters give time, attention, encouragement, and friendship as well as any kind of financial help.  There are some people in my circle that are well off and all I can do is make them soup when they get sick.  I can’t throw money at the flu just like they can’t.  I will sit and listen.  Talk if conversated with and leave promptly because supporters also understand that people need rest to recover.

Supporters understand when you look like you survived a tornado and are forgiving of a short temper or a poorly thought-out comment.  This of course NEVER implies that one can treat supporters like servants or pests, rather, this is the occasional slip of tongue which is also apologized for.

The best part is that a good support system offers cheerleaders for every victory as well as a soft place to land after a loss.  A good support system is woven through love and experience and you can only be in a good support group if you are a good member.  Be the change you wish to see (Not sure who said this; could have been me, could have been Hammurabi).

Monkey Rambles

Nobody wants hear their doctor utter these words:

• seizure
• epilepsy
• permanent memories lost/ not forming
• we don’t know
• we need more tests
• no driving

As these words race through my head I feel such a range of emotions that I just shut down from the excitement.  I try to internalize my feelings so that I can study them before unleashing them upon the world.  The few pieces that I recall begin to make sense.  There was nothing I could have done or not done to stop the progression of what has been happening inside of my brain.  I wasn’t ‘forgetful’, the memories never even formed.  I was waking up feeling like I was in a fight or hit by a car because my body spent time tensed and convulsing.  I feel resentment toward those who downplayed my concerns, and I know that will turn into an issue.

Now, I have been living under these restrictions for a couple of weeks.  Waiting for my ambulatory EEG to be moved up.  I had a seizure while awake.  Everytime I think about it I just remember how scared I was to have no control over my body.  For a brief period of time my brain took over and I was an observer to what happens when the brain oversteps its boundaries.  I have been experiencing weird feelings, all on the left side of my body.  I sit wondering if one is going to turn into a seizure.  Will I be awake?  Will I be alone?  Will I get hurt?  Will I have the ability to know what to do afterward?

These are the thoughts that I have as I wait for my EEG so I can have some sort of answer as to what is happening and then how do we treat it?  I have faith that we will have some answers in the future, but I have my fears that my brain will discharge before I am hooked up.  There are very few medical things I fear.  The others are catastrophic occipital headache, vomiting/headache cycle, and needles in my neck.  Just thinking about this is making my BP rise.

Anywho, I hope the EEG tells us what is going on while I am awake and asleep.  If you are new to the experience or understanding of chronic illness then you might find it strange that I am hoping for there to be anomalies on the EEG.  Well, my own thinking is that once we have a test that tells us where the problem lies or where to further probe then I won’t have to do more invasive and/or painful tests.  My MRIs have not shown damage that could be causing my symptoms, and I have had 3/4 of my body electrified, twice, looking for nerve damage.  So, if there is no problem from the neck to the the toes, then the problem lies in the brain.  My previous EEG showed no abnormal activity.  Neither one did.  It seems like it is only happening if I am asleep or being active, talkative, excited, or tired.

I want an answer because I want to be able to reassure my daughter that we are making progress, because she sees me deteriorating.  I want an answer so my imagination will stop conjuring frightening scenarios.  I want an answer because it might help someone somewhere else to hear how I found the problem that they are also having.  Not knowing is the scary part.  It’s like a game to see which will happen first, the doctor or the seizure.

Still the positive part of this is that I am learning so much about something new.  I don’t always seems to have a problem integrating new information with old information as long as it is factual and makes sense with the other facts that I am aware of.  Woke up with occipital headache.  Did light yoga to stretch back, eased tension on neck, head still hurt, was unable to do anything that required bearing weight on the left arm or leg.  Sitting and it feels like an electrical shock is shooting down my leg, going further each time.

I take note of these feelings and sensations so that when my doctors ask, I have some kind of info for them since I forget so much.

One day I know my struggle will be over.  I just have to make it to that day.  I don’t know when or how or why, but I think we will each reach that place somehow.  I encourage you to move through your pain, try to find at least one good thing about every bad situation, try to go on for just a little longer.  It is not easy, but the adventure is more than you could every ask for…especially if you life cliffhangers and suspense thrillers!

Seize the Monkey

Today was a day that I have been dreading.  So much change in such a short time and there is nothing I can do to fix or help the situation.  I have to experience things that I never even knew existed.  The medical world is akin to the different levels of Hell that Dante wrote of.  Just hope your body works out well or you will wind up in the over-priced, confusing, everchanging, lowest ring.

I woke up feeling like I lost a fight last night.  I figured it was probably a seizure while sleeping.  I couldn’t seem to get up though, I made it to the restroom, made toast and pored a cup of coffee.  Ate the toast, drank half of the coffee and next thing I know, my daughter is scolding me for sleeping without me CPAP.  I then went back to sleep with the mask.

When I got up (about 4 hours after I first woke up) I threw on some clothes to go out to meet a friend and have a mocha.  Then, I felt a now familiar feeling, like someone is lightly rubbing the top of my brain.  It seems like every time this happens, something weird happens to my body shortly after so I sat down when I felt it.  Then it felt like someone shocked my left temple and my left hand started waving around by itself.  As this happened, I saw everything happening, I realized what was going on, but I couldn’t move the rest of my body and I was very afraid.  In a split second I understood what this could mean if the seizures get worse.  This event was only about 10-15 seconds, but it felt like an eternity, I don’t want to think about what it is like if it lasts for longer.  I feel like I might rather pass out instead of experiencing every second of my brain holding my body hostage.  I suppose either way I would be upset.

Knowing what I would be told, I called my PCP and talked with the nurse on duty.  I let her know everything that was going on because I knew she would have to chart our discussion and the advice she gave was really, I need to call my specialist’s office and report my symptoms to them.

Along the drive, I practiced the phone call to the nurse who would be issuing me temporary orders until I could get through it without feeling a lump in my throat.  I had a great mocha and I hung out with some awesome people for a bit and then I hopped back into the truck and took the long way home.  I needed to drive past the road to Mount Charleston.  I had to see Lone Mountain and the mountains that stand proudly a few miles West.

I love the sound the tires make when I change lanes and run over the little reflective thingies on the road, so I changed lanes a few times.  I saw the buildings I don’t remember and wondered how many times I have ‘seen them for the first time’.  At one point the freeway was high enough to survey a good portion of the valley I call home.  Eventually, I pulled up into our driveway and wished I were irresponsible and a bit more selfish.

I made the dreaded call to the nurse and left a message.  She called me back to let me know that she was working to get my EEG either expedited or changed to a location that can do it sooner.  Both of my neurologists would be contacted to work out a plan about how to handle this.  I was told to go to the Emergency Room if I feel like my brain is being rubbed, no more swimming, no cooking alone, and no more driving.  The good thing is that these are “temporary” restrictions until I can get a diagnosis. The not-as-good news is that any or all of these could remain permanent.  I hope they don’t, but if they are, I will have a few great therapy sessions.

More than the long-term issues, I am concerned with having one of these seizures before I get some type of treatment going.  I don’t want to spend another second experiencing an inability to control my body.  That is the real fear.  I believe it will be taken care of, but UNTIL THEN, will I be ok?

Well, guys, this is it.  I hate cliffhangers, but my life is one right now so I have to leave one here until I come back with some type of new information for you.  I am confident that even if I don’t come back with the news I wish to hear that I will be able to add many pages to the story of my life and I will end up with a better heart in the end.

If you are in a position similar to mine, my heart goes out to you.  If you aren’t, I give thanks for the blessing of health upon your head.  Just please understand, none of us are in the same boat but we share the ocean.  My issues are completely different than those of other people but we are all people and either we can work together or all just be stuck out at sea on our boats.  For now, that means giving up control of my boat and being towed by someone.  It is NOT what I want, but I am blessed to have people willing to pull my weight.  When I am strong enough, I will do the same.

If you have ever been the beneficiary of kindness make sure that when you have the opportunity, be the benefactor of love. -E. Michelle

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.

Inky Monkey

I love the arts.  I am particularly fond of music (Baroque being my favorite period) but I enjoy the grace and beauty of ballet, literature from all over the world, and of course I admire the curves of a statue or the brush strokes of a master painter.  However, I am aware of a few things:

• There are other forms of artistic expression and art evolves
• I only have a small bit of artistic ability outside of music and sculpting
• It is OK to be bad at art and still enjoy trying

So, I decided to participate in Inktober, which is where you draw something everyday for the whole month of October.  If you click on the link above you can visit that site and check out the rules and past prompts.

Anywho, my hands seem to be weak and so the prospect of drawing something everyday is very daunting.  However, I am waiting to hear test results that could alter my life course so I am challenging myself not only in dance (my feet are also weak) but I want to push my hands to their limits.  I have tried to keep each design easy, things I think I can draw fairly easily, and in most cases I do not color in the picture.  I usually will use dots as color markers because it hurts to hold and press continually to color.  The dots use my wrist, so my fingers aren’t taking as much stress but they are still used to do the initial sketch and the ink lining.

Having a chronic illness or chronic pain or any disability can be discouraging when life changes drastically.  For me, it has been shifting and changing for three years, so even though my family and home are stable, my body and health are not.  It gets very easy to quit or give up on things because I physically just can’t do it like I used to or my neuro team says, “NO!!!”.   I decided to not let any of this stop me from finding ways to express myself and get my energy out in a peaceful way.

I joined dance because my body feels foreign and we need to be back in sync. I decided to do Inktober because I wanted to release creative energy.  What really lured me in was the challenge to do something that I enjoy but am not really good at.  I can make a drawing and people can know what it is, but it usually would not be considered “art” by anyone with reasonable taste.

We are four days in and I have given every day 100% effort to make something that I didn’t think I could make.  Today, I think my most difficult challenge was perspective.  I really didn’t put that much thought into distance and size so I feel like everything looks ‘off’ but I am still happy with my work.  I am happy with myself for trying and being able to figure out what I think could have been better.  I hopefully will adjust for the future.

My fellow humans, perspective is often what we have to work on so that we understand what is going on and how to best deal with it.  It is easy for me to lay around everyday with this stupid headache and watch cartoons.  Changing perspective has allowed me to see that I have the opportunity to recreate myself as soon as all of my medical issues are under control.  I just have to keep trying new things.  For now they help me not think about test results, in the future they might be what I need to make an impact on the world.

I encourage you to try new things or do things you aren’t good at for a little while.  It is amazing what your brain can do when you give it freedom to express itself in new ways.  My hope is that everyone can find activities that suit their needs, physical, emotional, and mental.

If you are a part of someone’s support group make sure you are a cheerleader.  Be supportive even when you are fairly sure the person has lost it.  Do the same activity, or at least give feedback on the person’s progression.  My daughter is an artist, and she critiques my drawings with the knowledge that this isn’t my strong suit.  Shoot, I am not a writer, my sister is an author, and I write this blog like I know what’s up!  I realize I probably change persons and tenses and that I easily switch from proper grammar to words I make up a little too often, but she gives me the benefit of knowing that I sing.  I write as a fun thing, but nothing serious.

Your support means so much to the person you love because they have probably seen the misery of someone who does not have a support system.  It is heartbreaking to think of what life would be like in the worst of times without you being there.  We love ya’ll.

That’s it.  I have to go get some rest because tomorrow I have to draw something else and I have to get that beauty rest to make beautiful things!