Monkey In Waiting

There are people who have known me for a long time (over five years) and some who have met me after my decompression and a lot of them ask me why I don’t have a definitive diagnosis concerning my memory.  Unfortunately, it isn’t as easy as spotting a heart problem or a mass on the lungs.  For someone my age to have a memory issue in the first place is highly unusual except that I have been in a car accident and sustained a brain injury.

So people are like, is it the injury that makes you forget?  Well, it isn’t that simple.  My brain was out of its proper position for over a year and lots of little changes can take place during that time.  The surgery took care of the immediate problem which is having brain in the neck.  Part on my cerebellar tonsils were cauterized, who knows what we messed with!  Still, it was all done to help prevent future damage from the formation of a syrinx.

At some point during this situation, I began having seizures, and my neurologist suggested seizures as the missing blocks of time and instant forgetfulness point to excess electrical activity.  So, I see him, we order tests and images, and wait three months,  See him again, I am put on memory medication, some meds changed to help with nighttime seizures, and lots of therapies to see if we can get these nerves and seizures under control and if neuro rehabilitation is going to be useful.  The thing is, we now wait to see him again for four months while I go through these processes which will either give us answers or send us further down a path that will lead to Cleveland.  Even that is maybe a year off.  We have to assess the therapies, run more tests, and then if it required, put in a request for authorization to go to another city to a specialized clinic.

Meanwhile, I am in a lot of pain now that it is cold.  My head has been hurting more and I have been sleeping a lot.  I try not to feel bad about it because what can I do?  I know that these therapies are going to take a lot out of me, and I hope that I can get through them gracefully.  I want to do everything I can to get better and if this shows me that it isn’t helping, then I am prepared to go as far as I have to go.

So, this is a slow process because things are usually done in three month increments and seeing a top neurologist frustrated with my case is encouraging because I think he is so curious that he won’t stop until he discovers why I have the memory loss and if anything can be done.  He already told me that the memories that are gone are gone for good.  I think we should live in the present because it isn’t promised that we will even remember the good times we have.  I don’t forget just bad stuff, I forget all of the things.  I forget people.  We are both frustrated and I know my poor family is.  They have to live with a once very competent woman who describes things with vague words and hand gestures now.  It is just a hard situation.  Even trying to figure out if I am capable of living on my own without hurting myself.  I think that I can but with someone to check on me here and there.  Without disability, that is just a thought right now.  I am actually thankful that I have the opportunity to stay with my parents because I have developed a special relationship with them that I think can only be borne out of a difficult situation like ours.

This week, I have my first physical and occupational therapy visit.  I don’t expect it to be horrible, but I have a lot that needs to be worked on.  I need to be able to write, do dishes, wash my hair, do my own pedicures.  I need to be able to stand in heels, lift boxes, perform, and they have to figure out what is happening with my voice.  The left side of my throat seems to be lazy and that is problematic.  I don’t see the speech therapist for two weeks!  I have been waiting for six months actually because of paperwork mix ups and then scheduling.  I am scheduled out to March.  We will see how they schedule out PT and OT.  I am hoping not more than two days a week, but they like that 3 days a week stuff.

All of this has to happen for several months, then my neurologist will review all of the data and see where or whether progress was made in different areas and from there we determine the next step either treatment OR testing!  They will give me another three month period to see if the treatment works or what the test results say and this is how it always works.  It is not some easy process where the doctor has found a lump on my brain and we know where the problem is coming from.  So far my brain looks normal, that is even more disturbing because it gives no clues to the seizures or the memory loss or the pain or the nausea.

So, if you are new to this process, I pray that you get everything diagnosed quickly, but don’t be surprised when you discover that this tends to be a process that can take years to get answers or discover that there are no answers known to medical science at this point, but they will keep an eye on research.

Don’t be shocked if you are a medical oddity.  You will have horrible days of wanting to strangle every Ivy League doctor out there, but we are the door openers.  We are the ones who keep pushing so that the research is done, so that the answers are found.  So that someone else won’t have to go through what we are going through.

We want memory patients to have access to the few memory meds available if their doctor thinks that is it in the patient’s best interest.  Insurance companies shouldn’t be overriding the decision of someone who is actually with the patient if that doctor has a clean record.

We want neuropathy patients to be heard.  It doesn’t matter if it isn’t on the images, scans, or recordings, THE PAIN IS REAL!  I have been in therapy, and I had a neuropsychologist recommend that I go to therapy.  He didn’t even read my file.  He figured I was just a hypochondriac who lost her keys occasionally and had these headaches that sound like horror fantasy.  I told the neurologist that I was ready to kill that man and please don’t make me see him again.  He wouldn’t even do the exam.  Pissed the neuro off.  Some doctors see one thing in your file and focus on that and then delay your treatment because someone has to now come clean up after them and PROVE them wrong.  Thanks, neuropsych.

If you are on the support team of someone who is on or starting a medical journey, just know that it IS FRUSTRATING and that is normal for things to take forever and you are truly blessed when things go quickly.  If they go slowly, it will be hard, but try to make the most of every day and make the effort to have more good days than bad.  You may be in for a long ride.

 

Monkey Thanks: 26

Although it may sound weird, I am thankful for someone I don’t really like but I love and would still do anything for.  I ran into a person who although we didn’t really know each other, something about our relationship felt timeless.  Familiar language, choice of words, idioms, and such.

We spent hours together, laughing, talking, drinking coffee.  As I spent time with this person, I would hear them take a call in the other room and say things about me.  This went on for several weeks.  In the meantime, I didn’t change how I treated the person, I just hung out and helped if they needed it.

Then one day, the person let loose on me.  All the fury of the world.  How I was not a good friend.  How I was mean.  I was unkind.  I was a LOT of things!  Then I took this person to the store as they could not drive.  I am a terrible friend, you see.

It takes a lot to get to me and to affect my feelings, but to be called uncaring and unencouraging, well, these are things my reputation is built on.  To be called this, and then learning that the people being told these things about me are fellow church members (everything comes back around) was disheartening.  It has been a really long time and I am still struggling with why someone would say these things to me and about me, but then on Sundays still act like my friend?!

I have not caused a to do about it because I learned a lesson that I am thankful to have learned this way than by a more painful method.  People can be hurtful and not realize it and it isn’t always my place to point it out “so they can change” or whatever.  You know, I have no idea what was going through that person’s mind when they said all of those things, but they were going through serious medical issues also.  I do not excuse it because they have a good reason (they don’t) to say such things.  I excuse it because now that I know how they really feel, I can understand that they were just being who they are.  That has nothing to do with me, therefore, I only have to worry about myself.

Honestly, it would look awful if I publicly accused this person, I would be the pettiest minister in the world.  They have their own life to deal with, I choose forgiveness and moving on.  They say hi, I say hi…WITH A SMILE!  I have my own joy that cannot be stolen with words and attitudes.  I am thankful that I see this person regularly and am forced to act like we don’t have “a past” because that is the best for everyone.  Three years ago, I would have been an animal.  Thank God for time and aging and the growth of wisdom.  I am new, and I owe it to this person to be new again also.  We may never sit down for coffee again, but they will always get a greeting and sometimes a random text just checking on them.  I don’t have to like.  Just love.

The Passenger Monkey

I had a visit with the neurologist, and in another post I will get more in-depth about that visit, but know this, it was disappointing for everyone involved.  I just want to focus on one area of my disappointment and that is that I am still not allowed to drive.  For at least another four months.

I know this probably sounds like a minor inconvenience and I suppose in most ways it is.  I often am in a vehicle with another capable driver, so it’s not like THAT much is different…except I am now permanently a passenger.  I have a lot of appointments and now someone has to be available to take me.  Since I haven’t had my disability hearing, I have no income and my family takes care of me, so I really hate adding another thing to their plate.  Luckily, my family is flexible and understanding that I am doing everything I can to help.

When I want to get something in the middle of the night, I just can’t.  I am not even allowed to walk to the store by myself.  I find it to be an annoying restriction but one that is important for keeping us all safe.  Still, I don’t like people taking things from me that I enjoy.

This is where my biggest issue is.  I LOVE to drive.  I have been driving since February 24, 1997 when I got my permit.  Six months later I had my licence.  Then my car.  Freedom!  I love the freeways!  I would take the long way just to feel the breeze and see the mountains and the valley.  I have driven across the country through snow, fog, rain, hail, dust, ice, heat.  I have had to be towed from the middle of nowhere and wait for a rim to be delivered to nowhere while I ate bologna sandwiches with mechanics in the dead of winter.  I went off-roading at Death Valley National Park.  I drove along the California coastline.  These are all precious memories that I thought would always be added to.  For now, I will have to close this chest and open one that allows for a different type of adventure.

Still I am going to miss being the captain of my ship.  This is one of the issues that seems really small, but something I have done for over half of my life has been taken from me. I have been stripped of a portion of independence that I loved dearly.  I had one last road trip planned, but I will have to change that to some other type of getaway.

Why not just let someone else drive?  Simple, I enjoy solo travel.  I like being able to do what I want without having to listen to another person.  I enjoy the sound of the wind over snoring or conversation.  I DO NOT like sharing hotel accommodations and I have no problem spending lavishly on myself (within a set budget for a vacation) and I need ME time.  I do not like keeping up with other people.  I know this all sounds horrible, but trust me, ALL of my vacations have been awesome because I got to do what I wanted.

Now, I probably won’t be able to travel alone as my family would never approve of that.  I can enjoy a “trip” with another person.  Where we plan stuff to do and have an itinerary, but that is not what I like.  I like to stay in my hotel room and relax.  Or go to the pool and relax.  Or have lunch and relax.  The key to relaxing (in MY LIFE) is to not involve other people.  They talk.  They want to split bills.  They want to share a room.  Just thinking about it is less than pleasurable.

On the more practical side, I can’t even drive my daughter to school.  I can’t drive myself to church, so someone has to come home and pick me up.  If I forgot something at the store, I can’t just run and get it.

Right now it is still a shock, but I know it will just take some time before it becomes my new normal.  I think what most people fail to see is that I just feel like I am losing little parts of my past normalcy that I desperately try to cling to.  I have to mourn every loss.  Every little thing that I cannot do anymore has to have a proper resolution so that I am not hanging onto it.  Letting go allows me to embrace something new.

Never give up on the hope when it is dark and things seem to be going awry.  I can promise you that if you push through that you will discover strengths and talents that you never knew you had in you.  That is NOT to say that things will get easier, but your wisdom and tolerance will increase and eventually you move with the process…even when you aren’t thrilled with it.

Family and support, be kind because you may not know how it feels to have tiny portions of yourself taken away or changed and unfamiliar.  It can make life a frightening experience and we need to know that we are in a good place with good people around us who love us and will give us time and understanding.

Thank you for those who stick with us and don’t question our moments, they just live in them with us.  Ya’ll the real MVPs.

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!