The Monkey’s Extension

As you may or may not know I received a shillelagh for Christmas and over time we have become pretty close buddies.  I have been advised to keep it close by because my seizures aren’t quite under control yet so I do have periods of altered awareness and I am not always focused enough on walking.

Recently, I have had a number of incidents at church (of ALL places, *sigh*) concerning it and my health in general and I want to cover a few points that I think (THINK) most people would agree with.

• How you ask someone about their health matters.  Problems can range from ordinary to embarrassing to rare and anywhere in that spectrum.  People have actually asked me how my brain was doing.  Nevermind that I an entire human.  I have walked in with a cane and there is no, “Hi, Michelle!” because it is really, “How did you hurt your leg? What did you do to your foot?  Did you fall?”  and while I realize this is all done out of “concern” it is often to satisfy a personal curiosity about something that really isn’t your business.  Suggested phrase: Hi, Michelle!  How are you doing?  It gives me room to answer in a manner that I find comfortable without feeling like I am spilling all my beans.
• Giving advice is like giving flowers.  The gesture is nice, but really, I am allergic to this type of toxicity.  See, I have a neurological condition called “I’m not quite sure but I have a theory (my neuro)”. So, I believe it is understandable when Jennifer and Brenda want to be supportive, but you are an accountant and a grocery manager, neither of which involved the type and investment of effort put into learning about the dysfunction of the human brain.  Yes, I tried kale.  Yes it was an organic.  Yes I do a yoga every day.  I diffuse oils.  I meditate.  I drink green tea.  I pray.  Yes my diet has magnesium in proper amounts.  Yes my blood panels are stabile.  After doing all of this, I then have a seizure and I can’t get to the oil to cleanse a chakra, and we are Christian, that isn’t a thing for us, is it?
• For many of use who became disabled as adults it is hard to transition to a completely different life.  We tend to form tight bonds with the people and things that make us feel like our old selves, but we also form bonds with the items that help us get to feel and act independently again.  DON’T. TOUCH. MY. MOBILITY. AIDE. My shillelagh has been touched, grabbed, someone even tried to see if it would snap!  Why?  That is like trying to break my leg.  I need that “thing” and in fact, I have grown quite fond of it.  I have spent most of my life as an able-bodied person and it has NEVER dawned on me to play with someone’s walker or worse, imitate them using it.  This is thoughtlessness that occurs at the level of leadership and I’m just trying to be at church minding my own business.  I am just not sure if I should be flattered that my struggles bring you so much joy.
• Keep your hands to yourself or offer a handshake.  I have literally had my arm grabbed while walking through the lobby (of ch*rch) as if I am a piece of furniture and try to pull me or spin me around.  I have begun to aggressively ignore this type of activity because should I confront the people who do these things I might say things.  My mouth can get a mind of it’s own and when it does its only intention is to cause emotional pain.  Of course there is the chance that we have the random encounter (I am a church ninja when possible) I will often give a handshake because people who know I have had brain surgery still squeeze me as if I had enough bone to support all that love.  If I can hug you, it will be soft and fast, please do not trap me in your brotherly love death-grip while swaying side to side.  I already have trouble supporting this big ole head of mine, I do not need you to squeeze the life out of me.  The most ideal interaction for me right now is a brief wave and hi as I move from one place to another.  Chances if I stop to greet you I will get a hug, be asked why I am using a cane, given advice to bathe in kale and asked if the surgery didn’t work or what?

I know a lot of this sounds harsh, but I am saying this through the anger and frustration that I feel when I am reduced to my cane or my conditions.  I just want people to say hi and not see the cane as anything different than my arm.  I want people to respect my shillelagh like they do my purse.  Leave it alone, it isn’t yours: it is personal.

Much of my time is spent blogging, vlogging, and chronicling my life on Instagram spreading awareness about my conditions, about what I am going through, and while so many of the people I know have access, they don’t bother to really look past what they can find out about right now.  No one wants to read about my worst days, but are so quick to point out how great I look and how well I must be doing.

I know that I have to get to a point where I can use these as teachable moments as opposed to episodes of intense frustration and anger, and I hope that I am getting there.  I also understand that I probably am going to have my moments, but I promise to learn from each one and better myself so that I can be a good representative and be a more emotionally rounded advocate for patient care.

HOWEVER, this does not excuse inappropriate behaviour toward someone with a disability, no matter how close you think you are to them.  Be kind and civil.  Be respectful.  If you wouldn’t do it to someone you greatly respect, don’t do it to anyone else.

The last point that I am going to make is that you don’t need to know every single thing happening in my body (and you won’t unless there is a reason) and in no way are you entitled to know unless you are my caretaker or you are paying my bills.  I am also not required to give you my attention when my body is demanding my attention.  So if it seems like I am ignoring you, it is because I am on purpose because I can only focus on one thing at a time.  Hugging you is not worth bladder failure.  It never will be.  Stop getting our feelings hurt and try to see that I am dealing with a thing that none of my 28 doctors can fix or really help right now.  I have a team of people shrugging their shoulders and hoping the guy with the OTHER PhD can figure it out.

Of course, having said all of this, I try my hardest to put on my fake smile and recently being more social because I don’t want to suck all of the time.  I just want a lil more respek put on my cane.

The Monkey’s Phantom Pain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Choose wisely.

Monkey Thanks: 22

While I hate going outside of rules I created,  I love to overstep my own boundaries and test my patience with myself.  I only wanted to do one person a day, but I have already done one person over two days, so today I am going to be thankful for a community of people.  My sister lives about eight miles away (that’s very far in sister-speak) and it is kinda in the heart of Las Vegas and it isn’t the best of neighborhoods, but it really isn’t the worst either.  People there are just trying to live, no frills.

My sister is a social butterfly and as soon as she moved in, she became the hub of activity in her little area.  People started getting to know each other, then they would have cookouts, they started looking out for one another.  They pulled together whenever someone needed something or was sick.  They mourned together when someone passed away.  It would be like her to plant her garden in a thorny field and do just fine producing fruit and flowers.

I am thankful that this group of people exist to bear out life with one another and show each other love.  I know everything isn’t always great with everyone, but what a blessing to have people who try to look out for each other and enjoy each other.  I am thankful that there are still people who can put self aside for the good of the group.  I am thankful my sister has some sort of need to socialize with everyone with two ears and a brain.  She is a catalyst for changing people’s hearts and the world needs more people like her and neighbors like hers.

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.