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Thoughts Of A Music Monkey

Really, this entire journey has been fraught with surprises and unexpected twists and turns.  In the very beginning, I was nervous but I had faith that I would come out of surgery with no complications.  I was told that while it took longer than expected, part of that was because the holes where they screwed a vice onto my head wouldn’t stop bleeding so they ended up having to staple them and I took a while to wake up from the anesthesia.

I tried as much as I could to follow doctor orders, go to appointments, physical therapy, and after 6 months my neurosurgeon was concerned about my memory and referred me to the brain center in town.

As time has “progressed” around me, everything has just been a blur.  In my head all I see is a timelapse video of me standing still as the world whooshes around me, but my body and mind are deteriorating at the speed of everything around me.  Here I am in 2016 in my head living in 2018 and while it seems I do so little, I feel like my mind is running all day to catch up to a world that is constantly changing and I am changing but I don’t really understand what is happening to me.  We don’t know why this is happening.

The important thing is that I keep discovering things about myself, good and bad.  I wrote a book!  Who would have ever thought.  It’s like my blog on steroids.  I didn’t think that was anything I would ever do.  I plan to keep my people —I was probably about to lay some earth shattering lines of wisdom but I seem to have blanked out.

That is the problem.

I assume the point I was going toward is that life is unexpected and while I don’t remember much anymore, I am thankful that I have found that I am adept at translating my experience into written words that see to get more flowery as time goes on.  While I feel out of place in time and in the wrong body, I have not stopped.  I am trying to pull the pieces of me that are left together, and gather new pieces that I have found and form a new Michelle.

This Michelle is learning how to deal with mental inconsistencies so that she can stand up and speak out for those who have no voice.  This Michelle is learning to deal with the medical system while batting memory loss, constant headache and nausea, and a trick knee.  This Michelle is learning what to ask for at doctor appointments and ALWAYS having a rational reason for getting things accomplished.  This Michelle puts everything in her phone or it isn’t happening.

The best part is, most of the time, I do not remember that I have memory loss, so I have to really try to have someone with me to remind me to put it in the phone.  It is my battle to fight and I am on it.

I wish I could say that I am consistently positive, but there are days that I really want to give up and stop the fight.  The question that stops me is, “what will I do then?”  If I give up and I don’t happen to get disability, what do I do then?  However, right now I am telling myself that everytime we clear a battlefield we have made room for others to come.  If I cannot be “fixed” then I will use the energy and resources I have to find a cure for Chiari Malformation and to help patients who receive head or spine injuries get promptly and thoroughly examined and imaged and followed up on in a year to help catch decline before it is too late to halt.  I assume that means that major changes would have to take place, however, I have nothing to lose if my memory is gone, so I will fight my way to Capitol Hill if that is what it takes.

I will endure the setbacks, the pain, the frustration, and everything that frustrates me in order to lay the foundation for better healthcare.  I have recently discovered that I am losing control of my left vocal fold.  I cannot sing very well anymore.  My most precious gift is withering away.  I will gladly give it if it means that I will help someone keep their ability to draw or dance.  I refuse to let my suffering be in vain.  I believe I was born with purpose, I have simply been collecting the tools I need to carry out my mission.

What’s your purpose?

Holiday Monkey

This time of year is when we tend to reflect on how thankful we are for things that we have, even though we should be doing that all year, right?  I am going into the holiday season with therapies and doctor appointments and lawyers and all kinds of wildness!

I must admit, I have no idea how I’m going to handle the rest of the holiday season.  I made it through Halloween, which I have never been fond of.  Like, just go buy candy.  anyway, once that was over, all of the Christmas stuff came out with some turkey stuff here and there!  However, for me there is is very special day stuck off in there.  The day celebrating the birth of my wonderful daughter.  I actually made it through her Sweet 16 party AND made it to church the next day!  Seriously, I had so much fun!

Now, we have a play that everyone in my family is somehow involved in, then right after that we have to prepare for the church’s Thanksgiving dinner which usually has us there from like 9am to 6pm.  It is a great way for people who don’t have family, or only have a couple of people, or can’t cook, or whatever can come together and eat and sing and fellowship.  We don’t turn people away.  We take food to those who can’t drive or are sick or can’t leave for whatever reason.  We take food out to the homeless.  We feed as many people as we can and it is always such a success.  We found that people preferred this to getting a basket of food they have to cook and may not have access to everything they need.  Plus the more, the merrier!

After turkey day is the worst, three weeks of Christmas parties, luncheons, dinners, and secret santas.  I usually hide out during this time of year because it is just too much.  because just when you think it is over, there is the Christmas program at church which takes weeks of practice in between all of the other social gatherings.  Did I mention that everyone is having babies too?  Baby showers are my kryptonite.  At least at mine we went swimming, but I also only invited five people.  Also, why are we having baby showers on baby number two, three, or four?  Look at me ranting!  That is why I don’t do social engagements.  I often feel like they are over prepared, pretentious events where I have to pretend to have a good time.  I can’t lie that much, so I just don’t go.

Finally, when Christmas is over, there is a whole week of quiet as everyone minds their own business, then it is New Year’s Eve.  I must say, the ONE time of year I want to go to an actual party, I am never invited.  I haven’t been to one in many, many years.  The last time I kissed someone one New Year’s Eve was twenty two years ago.  I feel like, I want to bring in the year with someone I really like, maybe one day.   Until then, I just kiss my phone and celebrate with a good night’s sleep!

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).

The Monkey, Life

This has been a difficult 7 days.  Getting our washer, dryer, and dishwasher has now become an ongoing nightmare.  My uncle died.  A friend’s baby died.  Another friend’s brother died.  My sister is not feeling well.  I mean just a mountain of pain.  As someone who desires to help, there really isn’t much I can do right now.  I am in the place where I have to experience the pain that I often deal with in others.

The best part about all of this is the birth of a little girl to another friend of mine.  I am not a “baby person” but in these times we celebrate every single thing that we can because we need every ounce of joy we can find.  I suppose at times we must shed our tears while we smile and that is ok.

The next few days will fly by.  Funerals I can’t attend, a memorial to plan, a new life to welcome into this world, phone calls, paperwork, cards, and so much more will happen.  I know that while life moves on for most of us, a few of us will be stuck in moments of time experiencing the surreal feeling of unexpected stillness.  My aunt will have coffee alone, but I expect for a while she will make enough for two.  My friend will walk up her stairs every night and come face to face with a baby-less nursery.  My own mother will only have one sibling to speak of in the present tense.

While I was going through my brain stuff, my uncle was going through his cancer stuff.  Multiple myeloma.  A piece of me feels awful because my mother made the choice to be here with me instead of spending more time back East with her brother.  As a mother I would definitely make the same decision in that circumstance, but as a girl who has lost her brother I know how badly she wanted to be there to support him.  I am grateful to have a mother who is willing to sacrifice almost everything to help me.  I am glad that she made it back out there and was able to spend time with him before he passed.

What does all of this have to do with Chiari?  Well, life doesn’t stop happening because we had surgery or can’t get up some days.  Just as I affect my family, my family affects me.  I don’t wish to have a headache AND mourn, but I don’t really have a choice.  Chronic illness doesn’t really take a day off.  Trying to make sure that my emotional turmoil doesn’t translate into increased symptoms is a mixture of therapy, coffee, yoga, the gym, cartoons, music, and blogging.

If you have a chronic condition just make sure to listen to your body when you are going through ANY difficult situation.  Dealing with emotional pain takes a lot of energy and there is nothing wrong with handling it in whatever way is healthiest for you.  When I got the news, I had about six hours before I was emotionally run down and I turned off all of my devices , put my CPAP on, and went to sleep.  I woke up, went to the gym, then went back to bed.  Did I miss phone calls and text messages?  Sure!  Did I get back to everyone when I was well rested and emotionally available?  Yep!  Everything survived when I took a break for myself and NOBODY was upset.

If you are just peering into the lives of the chronically ill and pained I invite you to imagine how the world would go on if your leg broke.  Now, imagine that everyday except maybe your leg broke off and now you have some medical issues.  You may have also developed depression.  Also your bladder doesn’t work right.  This is your new life.  You get to keep all the hassles of your old life (bills, mortgage, cooking, taxes) but now you get to marry them to all of your new problems.  Also, you still have the unexpected auto breakdown, dead fridge, and air conditioning troubles.  Then…BOOM!  Tragedy!  On top of ALL that other life stuff.  You would want to lock yourself away sometimes.

It’s alright to take time for yourself when you need to.  People may think that you are lazy or disinterested, but those people can’t appreciate what you go through on a normal day, let alone a day when something is very wrong.  You know your true intentions and that is all that matters.

The Monkey’s Day

 

Today I had a very difficult day.  What began as a few inquiries ended up being frustrating phone call after frustrating phone call.  I can deal with someone putting an electrode in my muscle and giving me a jolt, but phone calls are torture.  I am choosing not to go into today’s events solely because I feel I have already devoted too much energy to them.  Just know that it wasn’t pretty and it began to bring out the petty, old Michelle who has no time for any of this.

I took my dosage of Lexapro and my diazepam (I don’t take this every day) as I knew the phonecalls would get to me, but my feelings seemed to burst right through that.  I tried to give myself some down time by getting on social media.  I don’t know what it is about Facebook, but it makes me hate people and myself.  I never experience these types of feelings on Instagram or Twitter, just Facebook.  I got on there and I am reading about people who were decompressed a month ago and are out living life and the people who got to go back to work and the people who don’t “seem” to suffer the way I do.

In reality, I know that these people cannot help how their body heals and they shouldn’t have to deal with my problems.  I am happy that they don’t live a life like mine, but I feel the jealousy.  I am jealous of their mobility or their cognition.  Even though, I am just seeing a post or story.  I don’t know what they went through.  I don’t know what they deal with to try to have a the “normal” life I aspire to.  It feels like there is a part of me that will never give up the hope that things will go back to how they were, but then it gets disappointed a lot and acts like a baby.

I struggle to find a valid reason to hang around and deal with the things so many others have given up hope on.  I could just stop.  I could take my chances.  Yet right now as I deal with my struggles, big and little, I KNOW that more people are dealing with worse things without the support system I have.  I have the ability to try to make a wave or stomp hard enough to make a footprint.  If I can simplify one part of the process, then I will have accomplished something that can help other people get treated better.

You know what I wonder, though?  If I just went back to work and gave up all of the volunteering and such, would I feel bad about it?  Would it even matter in the big scheme of things?  This whole time I have been trying to figure out a “new normal” or how I will continue to live my life.  I love being vocal and being passionate about something, but I am most passionate about getting a job and being a useful member of society who contributes in a meaningful and economic way.

See, I just have a lot on my mind today.  I asked myself if I should leave church today.  I suffer here or there.  Why can’t I at least enjoy other parts of life if I must suffer so?  Am I willing to suffer the consequences I believe I will be exposed to?  Sometimes it’s hard to imagine anything worse than the feeling of rebar being pushed up through your brain.  I hate being at places in life where I question my beliefs and what I believe life and death are about.  These junctions are critical to everyone no matter what you believe.  I welcome them even though they are scary or confusing to go through.  I don’t know where I will end up this time.

Even believing, I can choose to turn my back and live my life so that some portion of it is enjoyable.  Manufacturing smiles is tough work.  Removing any expectation for a real life is dehumanizing.  Living day to day never knowing what has been happening is frightening.  What ever happened to evenings at the lake and early hiking, and happy hour?  I wasn’t rich, I wasn’t perfect, but I enjoyed my life.

I say all of this to express to you that I understand that even when things seem to be going well, we can become overwhelmed with things we have ZERO control over.  Especially if at some point we had control over it and lost that control somehow.  It can be hard to articulate emotions into thoughts and then cohesive sentences when there are multiple things running through your head and they are probably connected in various ways.  One though flows into another before joining a chorus of thoughts swirling around causing frustration and anger.

It can he hard to tell people what I feel when my emotions are this tangled and that only deepens my frustration.  If it is like this for me, other must be going through it also.  I want you to know that you are not alone.  Just because you hold a high position, or you are a mom, or you are in college, doesn’t mean no one understands you.  Your emotions are always valid, even when you can’t express them how you desire.  Hopefully you have or are accumulating a support group who will listen to your outrageous rants and not judge you nor tire of your regular rants.  If you have a memory like mine, you might rant for hours and hours not thinking that you have been ranting.  It takes a strong family to deal with memory loss.

Anywho, I encourage you to find a person or an outlet when you can safely let your frustrations with the world (and your body and whatever else) out because no one should have to carry around feelings that eat at them.  Don’t be afraid of counselling or therapy.  It can be very helpful to talk about your feelings to someone who isn’t involved in your life.  There is no shame in helping yourself understand and process your feelings so that you can relate to the world better.  Obviously, even meds and consistent therapy cannot make every single day perfect, but I have received tools that help me get this feeling out of me by writing a blogpost about it.  Seems to have worked and I am not excited about bed!!

Monkey Countdown: T minus 12 days

What a full day it has been.  Got up early to go to church and ended up coming home to take a nap so I could end up at church again for a function that was being held.  Made it home again.

To be honest, I did not think about going to the Cleveland Clinic today until the reminder to write popped up on my phone.  Even thinking about it now isn’t drawing a lot of feelings from me.  Maybe because I am just kind of tired from my day.

I really hope it is because I no longer have strong anxious feelings attached to this visit.  Seeing my fears written out has given me a lot of perspective and I have time to think about what is really bothering me.  I am now much more excited about my visit because I expect a more positive outcome.

As the day rapidly approaches, I am just thankful that I have made it this far and that I have my family beside me.  I have no idea what to expect, but I suspect it will be interesting, challenging, and at times frustrating.  That is usually how it works.  That is fine though, I can get through all of that.  I am ready for whatever they have!

The Monkey And The Process

There are times when I look back to the beginning of this blog and I can’t even relate to the girl (myself) who wrote this stuff.  There was a time when I thought that I would spend a little bit of time in recovery and then jump back into my old life and live like sleep was a myth.  Now, I see that I am still at the beginning of a very long road and that recovery might last years.  It may never end.  I might spend the rest of my life becoming the new me.

So, I thought that I would share a few tips I have learned about getting through the frustration of life after a major unexpected change.

  1. Get a support system!!  I try to say this as much as possible because it is imperative during the extremely difficult times of your life.  My family and friends have had to put up with everything from childish rants to uncontrolled vomiting to helping me go to the bathroom.  NOT ONE TIME have they made me feel like a burden or have they made me feel ashamed or guilty.  Brain surgery put me in a position where I could not do much for myself for a long time.  I can’t imagine what it would have been like to go through that alone or with someone who didn’t really care about me.
  2. Realize that you may not be able to do everything that you were once able to do, and that does not make you a bad person.  I struggle with this and I talk about it a lot in therapy, so please don’t think I have this all together.  Slowly, I am coming to understand that even when I was at my “best” I was limited by my intelligence, fitness, and will.  Nothing has really changed except the level of those things.  My accomplishments are still important and they still matter even if they don’t meet my former standards.  I have no control over how my body functions right now.  I only have the option to use it in the way I can and make it stronger than it is now.
  3. If you are looking for medical answers understand that it might take a while.  In my case, I have to wait for referrals and appointments and test results and followups.  for each issue, it could take one to three months to get everything done so we can see if this area is problematic.  I am not saying that it is easy or that it isn’t frustrating, but it takes time.  There are some insurance plans that allow for much freer access to healthcare and the process isn’t as long, but for many of us, we have to deal with symptoms and discomfort until we find the doctor who can tell us what the problem is and how we can deal with it.  This right here is why it is SO IMPORTANT to have a good support system, because it is hard to go through this for an extended period of time.
  4. Find a mental health professional, ASAP!  Not because you are crazy, but because illness can bring up unexpected feelings that your family and support system may not always be able to deal with.  As wonderful and loving as my family is, I see a therapist at least once a week because I need someone who I can talk to without laying extra emotional baggage on my family.  I talk to my therapist about my “spinning wheel” thoughts, or the thoughts that I can’t seem to make sense of, but they keep being at the forefront of my mind like; How am I supposed to take care of my daughter if I can’t read a book?  It is time to end the stigma of mental heath-care in the United States.  There is something wrong with knowing something is not right and refusing to get the help you need.
  5. Find something to do that gives you joy.  Not just something you enjoy doing or participating in, but find something that brings purpose to your life.  If you knit, knit blankets for preemies.  If you like reading, go read to people in hospice.  While it may seem like a bummer, I help plan and carry out funerals (with a team, of course).  I remember what it is like to be stuck in the shock of losing a loved one, so I help return normalcy.  The family is allowed to focus on the business of mourning and spending time with one another whole we handle the details and work.  It is amazing how much stress that takes off of the family.  Not only does it give me something to do with my time that is useful, I am reminded that compassion is one of the most important forms of emotional currency.  Over my lifetime, and especially the last two years, people have invested their love and compassion into me, and now I am able to give it back.  I AM NOT SAYING THIS WILL MAKE YOUR PAINS GO AWAY OR MAGICALLY FIX YOUR LIFE!!  I am just saying that some days are easier if you focus on the needs of other people.
  6. Be honest with yourself.  There are days that stink.  I do not try to fool myself into thinking that it is all in my head or that a positive attitude will make my head feel better.  Some days I don’t accomplish anything.  Some days I am not very nice.  Some days I wants to set everything on fire and just watch it all burn so everyone else can be as disappointed with life as I am.  I eat ice cream or peanut-butter sandwiches and I record it into my phone with a smirk.  I don’t kid myself.  Sometimes, it is a struggle.

Of course, everyone’s situation is different and we all have to look and see what works best for each of us.  These are just the methods I use to help get me through this thing called life.  It’s very difficult for some of us to get through any sort of life change.  I am working to learn even better ways of coping and moving forward so that I can deal with my life situations in healthy ways.  I hope the same for everyone else.

Free Time Monkey

I would like to clear up a misconception that hangs over the heads of people who spend a lot of time being sick or feeling unwell.  There is this idea that laying in bed means that I (I will use myself as an example) have time to enjoy myself and/or be productive.

If I am spending the day laying down, it is because I don’t feel well.  Probably because of a headache.  Maybe nausea, stiff neck, poor balance, or any number of things.  

Most of the time, for myself, ot is the headache.  It is buried at the base of my skull, where my head meets my neck.  When it flares up, everything in my head seems shrouded in a dark grey mist.  It makes my thoughts incomplete, jumbled.  The words I speak begin to make less sense as my brain struggles to find the right word.  I might want to say ‘coffee’ but my brain comes up with ‘tea’ as they are both hot drinks.  Some days the fog is thicker than others.  

The constant hum in my ears increases in volume as that pain increases in intensity.   Eventually, it is loud enough to block out the sounds around me.  If I am apeaking to someone, I have to watch their lips closely to understand what they are saying.  Eventually, I can no longer hear my own thoughts.

At this stage, I usually try reading.  I know that anything read during a headache is likely to be forgotten within minutes, so I try to read funny or uplifting articles, but I often forget what the articles are about in the middle of reading them.  I find myself scrolling back up to the title just to refresh my memory. 

Now, the kicker is that I still have appointments to keep and things to do, so I have to try to plan around these things.  If I have a doctor’s appointment, I have to make sure I rest the day before.  I usually have to being someone to drive me and/or help me remember the important points I need to cover and whatever the doctor says.  I sat in an office crying one day because I could not get the paperwork filled out.  It overwhelmed me.  I was in pain and nothing made sense.  

Once I get out of the office, I try to accomplish whatever I can like getting gas, grocery shopping, and whatever else I can do.  Then, I have to take a nap.  Maybe for an hour.  Maybe for six hours.  I can never tell.  

If I feel well enough, I practice ukulele.  I find that this can last about an hour.  My mind eventually begins to feel numb.  My fingers stop responding.   I can’t discern the notes.  I want to keep playing, but my mind gets so tired.  

I could write a series on how I get through daily life,  but what is important to know is that while I have time, it is far from free.  In fact, I pay with my freedom.  I pay with pain.  I pay with the currency of loss.  Time spent recovering from brain surgery is more expensive than most people would believe or care to pay.  

So, if you see me post a delicious meal on instagram, know that it probably took hours to put together, even if it is simple.  If you see me on facebook enjoying lunch with family and friends, it is because I need to get out of the house sometimes to socialize and I have had to plan in advance for a few hours out and a day or two of rest so I can recover from it. If you see me at church in nice clothes and makeup, it is because I just want to feel normal and enjoy one of my favorite places to be.

People with invisible illness need to enjoy the brief moments of happiness and comfort that life affords us.  We need to feel the sunlight.  We long to be where we once were in life.

And should you feel the need to issue a silent judgement behind their back, I implore you to take time out of your day to hear their story.  Ask what happened and how it affected their life and family.  Ask how they deal with pain and how their friends have reacted.  Most people (I think) will tell you that they never dreamed of being where they are and they miss their life.  

Be supportive.

Weather Monkey, Whether Monkey

It’s been rainy.  A clear sign that I have flaked out on many engagements.  If you know me, you know that I have been posted on the sofa, praying for a stabilization in the weather.  My head has been hurting.  I am downing ginger ale hoping to stem the tide of the nausea that has risen up inside of my body.  I am praying to feel better.

Of course the weather has some sway over all of our lives.  It dictates how many layers we will wear, how much sunscreen to slather on, and how open the moon-roof can be.  Many of us laugh in the face of the weather, knowing that it can’t stop us from a good romp in the park or hiking in the woods.

I used to enjoy my carefree days of defying the rain or sun, and now, I abide by the rulings of the Weather Channel.  So, when I woke up this morning feeling like a balloon was being inflated in my neck, I looked on my phone and sighed in agreement with TWC.  Today would be a rough day.  Then..it rained.

So, if you are my friend I need you to understand this; I do not control how I feel.  I have the “joy” of experiencing guilt every time I cancel plans.  Yes, sometimes you call and I look at my phone, paralyzed but the realization that I am going to have to cancel…again.  You jokingly rib me about our plans falling through but you never feel the painful daggers you are sending my way.  I wish that I could perform all of my everyday tasks, but that doesn’t even get done.  As you make it through your day, please consider how you would feel if your body quit on you.  What if your leg gave out on the way to the shower?  Would you really feel comfortable going on an adventure all over town?  If every time you moved your body threatened to send vomit in every direction, would you actually keep your lunch and dinner appointments?  If it felt like an overgrown man was smashing in the back of your skull, would you even bother to take a shower?   Lastly, would you want to explain all of this to someone who knows you had brain surgery, but isn’t able to imagine the recovery?

I don’t want anyone to feel bad or to feel sorry for me.  I am not even one year post-op and I am trying to figure out my new normal.  I have come to accept the fact that I can no longer go out and do everything I want to do.  I sometimes make plans and they don’t happen.  I am sorry.  In many cases, though, I am sorry that I made the plans with you, my non-understanding friend.  I will not make that mistake again.

I will continue with my recovery.  I will continue to get stronger and braver and generally more awesome.

If you are in my position and your friends are not really understanding that your body is holding you hostage, talk to them.  Tell them what happens in your body and why and how it affects your life.  If they are your friends, they will understand and try to make allowance for you.  If they are not, it will be obvious that you are an inconvenience and you need to run (or what ever your fasted means of escape is) as far away from them as possible.  They may not understand your situation and I think that could lead to some toxic situations (based on my own personal experience).

In the end, it’s ok if you don’t feel good.  It’s ok to cancel plans.  It’s ok to stop feeling bad about it.  It’s also ok to make tentative plans so your friends know that there is a chance that you won’t make it.  It’s ok to be a Whether Monkey.