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.

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!!!

Monkey Thanks: 18

I seriously just forgot.  Like, I was getting snuggled up for bed and then I found myself thinking about who I wrote about today…then I recalled that there had been no person because I completely forgot.  The person that comes to mind tonight is a friend, Frank, who passed away a little over a year ago…maybe two.

He was a veteran and he loved the Bible and he was in the Helps ministry and I loved having him in class because he would not hesitate to challenge me or push me to look deeper into something, and I was the facilitator!  He was great to have as a member of the class because he didn’t treat me like I was stupid just because of my age.  For a while I was the youngest minister who was really teaching and I did receive some pushback from a few members because they thought that my age should preclude me from teaching people who were older than me and had “titles” and such.

He encouraged me about continuing on when there was a woman who insisted I call her “reverend so and so” and I flat out refused.  So, the next week, I did an etymological breakdown of what these titles actually meant.  “Pastor” just means shepherd, and I did a few more like “apostle”, “father”, but when I got to “reverend” and said it mean nothing but servant, her face fell.  I looked at her and I said, “servant so and so” how long did it take you to earn the lowest title?

I don’t think she ever came back to class again.  I am known for being colorful in my classes and for letting people know that our ministry is one of service and humility and anything that does not align with that is pruned off of the ministry.  We don’t need people looking for recognition, we need people who are lowkey and invisible most of the time.  Frank was that man.

He often knew instinctively what I needed when we were doing an event and he often had an encouraging word for me.  I remember watching the color guard at his funeral and thinking he offered himself as a sacrifice to his God, his family, and his country.  I went upstair where no one could see and cried.  I still think about him and I miss him and it feels like he was just here.

I am thankful he was in my life because he gave me assurance in myself when I was just starting out teaching and being in leadership.  I have never felt like leadership material and he encouraged me to be whatever material God chooses to use me for.  It has been with me as I have stepped into my place and I move forward in ministry.

Monkey: Purpose

Life.  It is just a short journey we each take through linear time.  We have only so much time to grow, learn, find purpose, and create a legacy before the vapours of our earthly existence vanishes.  Some seem to know their purpose as children, others seem to die of old age, never discovering why they had the opportunity of existence.

I have my beliefs about why I am here, but I am not here to get into the personal beliefs of myself or anyone else.  I am here because I believe that on the most base level of existence, everything serves a purpose that usually cascades and has effects that ripple out and affect other things.  Take a tree that has great flowers, it attracts bees who like the nectar but get covered in pollen, so they pollinate plants.  That allows the bees to take care of the whole hive AND make the honey we snatch.  It allows those flowers to be fertilized and create fruits for us and animals to eat.  Then it allows for the seed that was discarded from the fruit to grow into another tree if it finds good soil and keep the process moving.  So, from this one flower can come a tree.  From the bees comes honey, and we plant the seeds to grow more trees.  Lots of benefit happening here.

Everything knows its job.  The bee does not try to carry the seeds.  The people don’t dance to show the bees where the flowers are.  The tree doesn’t make the honey.  They all just follow their purpose.  This becomes more difficult when it is people*.  Why?  People have created a society that dictates a lot of what is right, wrong, good, or bad.  Many people aren’t brought up with the true mentality that they have options for their life.  A lot of people are damaged or broken from something that happened years ago that stained their soul.

Many grow up following the expectations of society or parents or school officials who are often looking at what will be “stable” for a career.  Many people go into a field they find unpalatable because it provides job security and stability.  Eventually, something is missing.  What could it be?  The house is paid, the kids are in school, retirement is close, but still a void persists.

I am beginning to believe that it is because through all of the struggling to stay afloat and get ahead in this world, we find fleeting moments of happiness with no undercurrent of joy.  It is great to buy the house.  What if you rented out a spare room to a college student at a low price and helped them feel like they are at home in your city while they study there?  It is awesome to purchase the car, but what if you offered to give your less fortunate coworker a ride home WITHOUT receiving gas money. Just do it because they are struggling enough and you have the ability to help.

I am not saying we should all let strangers in our houses and give rides to the world, but many times people overlook the smaller gestures in life that are absolute gamechangers for someone who does without.

Never would I recommend this type of thing without trying it first.  At this point in my life I don’t have much to give financially, but I do have extra time on my hands.  When I hear that someone is sick, I start roasting a chicken and make soup.  It isn’t fancy or expensive, but it is just a way to show someone some kindness when they aren’t feeling well.  I don’t get anything out of it.  In face, I lose so many storage containers that I have to buy new sets every few weeks.  It is a small price to pay to see the smile of someone who may have felt forgotten or just alone.

In the past year or so I have also taken to randomly complimenting people.  Sometimes someone looks like they have a lot on their shoulders and I can’t fix every problem.  I will compliment someone and they usually feel safe enough to begin opening up and sharing what is bothering them.  This gives me the opportunity to listen and get them the person or services they need to take care of the issue (in most cases).

My goal is to make sure people feel better about themselves than they did when we said ‘hello’.  My purpose is to help those who are in crisis or after a traumatic event.  I discovered my purpose after my brother was murdered and I never wanted to see a family unable to properly grieve for any reason that I have influence over.  I plan and oversee funerals with the help of a large team of people.  We take the responsibility so that the family can talk and cry and mourn and not have to worry about guestbooks, repasts, and table linen.

It seems logical that most people would find their purpose after a traumatic event, however parlaying your pain into purpose means embracing your pain.  Accepting it for what it is.  Allowing it to wash over you, and this is what I go through at every service I am in charge of.  I put someone else in charge for 15 minutes and I go up to my office and fix a cup of tea and read the Bible and and talk about my feelings to God.  Then I compose myself and make sure that the family is comforted, cared for, and looked after.  My job doesn’t stop after the repast.  I call the families and visit them and make sure they know that I am always available to them.

After this whole Chiari Malformation and brain surgery, I added ‘advocacy’ to my list of purposes.  I am also a mom, a sister, a daughter, and I have a purpose in the life of each of my family members, and they in mine.  (May be good English. May be bad.)

I want to encourage you if you are in a place in life wondering why you even exist; you are the key to helping someone overcome the obstacles you have conquered.  If my blog helps 1 person to understand that decompression is no cure but that doesn’t mean you can’t lead a full life, then all my words have found their meaning.  We are not required to give back to a world that is so unkind, but we are also not required to behave as they do.

Our pain and struggles tell stories that those who feel voiceless and alone need to hear.  It could be Chiari, a family member dying, mental illness, harassment, or even a life changing injury.  Whatever your story is, there is someone out there who could benefit from hearing it.  In the future, the see you planted will grow into a tree and bear flowers that attract someone else who needs what they have.

Our purpose, in my eyes, is to love one another, even when it hurts.  Especially when it hurts.  Feel the hurt, acknowledge it, and remember, if you are alive to real my words then so far you have made through 100% of the problems and that is a great record!

I hope this made sense, at this point, there has been a lot of coffee and I am thinking very fast!  Love ya’ll!

 

*NOTE:  I am NOT a doctor, scientist, writer, physicist, or biographer, so use common sense while reading.

 

The Monkey Likes

I like someone.  It’s a funny, awkward thing I have going on and I admit that part of me is reluctant because I feel like I can make the exterior look great but I am kinda broken underneath the makeup and shiny hair.  I love interacting with him, but avoid him at all costs lest he see my face get red.  I watch as women throw themselves at him, it’s one of my favorite pastimes, actually.

I remember how fun it used to be to date and get to know someone and spend the day doing all sorts of fun or unexpected things.  Now, I have to worry about my energy level, will I have a headache, is it something my doctor will allow and a million other tiny worries.  Worries I would never want to burden someone else with.

The emotional problem that this mindset creates is is stirs the question “am I worth loving?” and all answers always point to “no”.  It is impossible to think of a situation where the answer is yes, even though I value myself as a person, I don’t feel like the required investment would be worth the return in this case.  I wouldn’t want to have to explain my wacky bodily functions to someone who is not family or a doctor.  When do you tell someone that?

When do I share that I go to weekly therapy because I can’t deal with the changes happening in my life and I don’t feel like who I was?  How do I share that sometimes for weeks I just occupy the sofa and lay in pain and I really don’t care about what else is going on?  How do I tell them that there will be times I will need them to just shut up and get me some ginger ale or leave me be?

Relationships are already complicated enough.  It doesn’t help that I come with a cart full of baggage that I don’t feel ready to pawn off on someone else or share or whatever.  I am admittedly unable to deal with anyone else’s baggage right now.  I have enough and that’s it for me.

I hope a time comes when I have my conditions more under control and I better understand what is happening inside of my body.  Then maybe I won’t feel like I am so much baggage, but right now my own life can be overwhelming and I think it might be a little unfair to bring someone into such a messy situation and expect them to just deal with it or whatever.

At this point, I am content to have my occasional ‘hi’ and I will continue to be friendly and mostly stay out of the way.  A great friend is always better to have than another ex- and honestly, it’s just nice having friends my age who did something with their lives and are intelligent.  Good looking doesn’t hurt.

Being single through all of this has been a huge blessing and I am glad that I didn’t have that extra person to worry about worrying about me.  It helped me understand my own strengths and weaknesses.  It really just allowed me to grow up into my true adult form.  This Michelle doesn’t need a man because she is valid simply by existing.  This Michelle had values, compassion, determination, and a pocket full of dad jokes.  This Michelle is finally happy to see other people happy (although she does not wish to attend your nuptials) and is pleased to see others around her succeed.

I live my life for Christ, and I am happy doing so.  Everything isn’t always perfect.  In fact it rarely is, but I am loved and I have a great family.  I am happy being single because I have found ways to fill my life with things that make me feel good.  I do Bible study (you might study something else, this isn’t a conversion page), I decorate lunch bags for a local charity. I write these awesome blogs!  These all help me feel great.  Notice how I didn’t require a man for any of it!

Who knows what the future holds, but for now, single is a status I plan to hang on to.  I am wrapped up in my personal turmoil and I am quite happy to stay that way alone.  Once I have a grasp on what is happening, maybe that will change and I will see a clearer path to having a relationship without burdening another person with my medical history.

Monkey Wisdom

*Warning, parts of this post talks about the aftermath of nasal surgery.  If you have a weak stomach, please gird it with courage and com back and read.

For many of us, once we learn a ‘thing’ we want to share it at every opportunity.  In October 2011 I was diagnosed with a “raging ear infection” as my PCP described it.  I was in there because I hyperextended my knee and it made noise, so now I had two significant issues.  I hadn’t felt anything in that ear until that night when I woke up in the middle of the night.  If felt like my eardrum had exploded and all  I could hear was a loud, high-pitched whine (raging tinnitus).  I went to the emergency room because the pain was unbearable, they gave me medicine to help calm the pain and I had good insurance so I didn’t need a referral to go see an otolaryngologist.

For six months I battled infection after infection, ended up having to get a CT scan of my sinuses and we found the problem.  I had a deviated septum that was blocking my eustachian tube and preventing fluid from leaving so the fluid was hardening.

I was on all sorts of antibiotics that they changed every 20 days, and steroids, and pain medication, but I went to school and worked and made it through.  Now, as I am going through this, people are freeing giving me their unsolicited advice about how to stop an ear infection, not realizing I had a deformed body part causing the problem.  Drink chamomile tea, warm compress, ice, olive oil drops, alcohol, and some other more painful things.  At the time, this was my first surgery and I was not used to the attention and I was trying to be nice and listen to everyone.  Their mom, so, brother, sister’s best friend’s roommate’s dad with the twin suffered from constant ear infections, and these were their healing methods.

A Christian myself, I just prayed God give me a good doctor who knows what he is doing because I am a singer and I need my nose and ears to work properly to sing.  I had an amazing doctor.  I got a submucosal turbinate removal, which is where they cut some extra bone out of your sinus turbinates which direct airflow.  They made a wider airpath, I suppose.  The bigger deal was the rhinoplasty (or I suppose septoplasty).  They took my septum out, and used it to rebuild my whole nose.  I basically got a free nose job.  Everything was even and nice, but my nose didn’t look different or make me look different.  I could breathe, I could sing, I gained 3 notes, and most importantly, there were no air leakages or infections.  My prayers were answered.

The recovery was disgusting.  My sister had to clean bloody mucus from my nose every few hours, and there was A LOT!  Once, we were talking, and I bent forward too much and blood just started gushing from my nose.  I learned to do everything for a while with my head facing forward.  My sister tired of cooking me eggs and bacon three times a day AND making me smoothies.  I am a needy girl.  It was not ‘roses’ is what I am saying and I gained many insights into how to help here to do this or stop that.

What I ended up learning through that and the subsequent tonsillectomy and decompression is that if someone wants my advice, they will ask.  Most of the people around me know what I have been through, they know what I have suffered.  So, when people are telling me that their child has an ear infection, I as if I can help and have they seen their doctor.  Just to be sure it isn’t something serious.  Other than that, the person probably just needs to feel unburdened and you can carry that load.  Just listen, encourage (not by throwing Bible verses!!), and offer support.  It’s that simple!!

People knew I had an ongoing ear infection, but they aren’t able to understand the medical explanation behind why because most people don’t understand anatomy and how body systems work together or can affect each other when in proximity.  People hear “simple ear infection” but in reality it is “congenital deformation causing pressure on another body system now causing failure”,  After the surgery (which also involved putting a tube in) I had to take ear drops that liquified the gunks that had gotten stuck in my eustachian tube.  A warm compress wasn’t going to help that.

All this being said, open your ears twices as often as you open your mouth and you will be surprised how helpful you are to people.  Open your arms before you speak unknowingly.  Accept what you see because you will never see the whole picture of anyone else.  Just love people.  Advise them when they ask.  Let them make mistakes.  Let them learn pain so they learn comfort and compassion.  If they choose to never learn, sometimes you have to walk away and learn the lesson, whatever it may be.  Aspire to love, everything else will work out.

Also, check out stick figures of myself in curious situations in life at Chiari Conversations, You’ll be glad you did!  So will I!