No Worries

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Days with no worries…

My life is a carefully planned and organized mess.  Looking at my phone, I have the same things happening almost every week and that is good because I have developed a certain expectation of how my week will go:

  • Sunday – Church
  • Monday – Helps Class
  • Tuesday – Therapy
  • Wednesday – Bible Study, Lunch, Church
  • Thursday – Kiddo At Class
  • Friday – Study for Monday
  • Saturday- Study for Wednesday

At times something is skipped or added, but this is the basic schedule outside of regular everyday stuff.  So, next week, I don’t have therapy.  That gives me a whole day at home to prepare for my walk!  Or sleep.  That is one of my favorite activities.

Every so often a day happens when there is no studying, no school, no class prep, no planned activity and I get to go outside into nature and just enjoy being outside.  It’s the most enjoyable for me when I can go without an expected return time.  When I can just go and spend hours among the wildlife and plants is when I feel the most normal.  I can still smell the plants and feel the breeze and it awakens a familiar feeling of peace and joy inside of me.  I used to take a lot more time to go do these things but since my surgery I don’t have the tolerance for hot or cold so I have to pick specific times to be out.

Still, the sacrifice is worth it because for a brief period of time I feel like me.  There are no worries or doctors or tests.  There is only nature and Michelle.

Our lives can be so hectic and are often spent inside the house or the car or a doctor office.  If you get the opportunity to spend time outside doing nothing, TAKE IT!  It is always best (in my opinion) if you can do it alone because other people tend to distract from true relaxation.  I don’t like to mix people and nature.  You never know who is going to go out with raspberry lip balm and get chased by giant bugs.  This person may not be a great companion in nature.  They likely are great to spend time watching anime with.

I feel that it is important to find something in your life that just allows you to relax.  Not the type of relaxing that comes with creating or hiking, I mean where you completely give your body a break, lay in a field, and enjoy the breeze without a care in the world.  You think about how awesome it is that you made it to this point and dream of ways to make it more awesome!  The most important thing is that you realize that it is healthy to take a break and appreciate the world around you.

It won’t fix your problems or take away your pain, but it helps keep all those feelings in perspective and gives you hope for the future.  I want everyone to have a hope that tomorrow is going to be better (despite all the signs) and even if it isn’t we can survive it and still keep our hope.  I want hope for everyone.

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Stage 6: Reevaluation Of Life, Roles, And Goals

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I feel like I am at this stage in most places but I am not fully here yet.  I do not yet have a definitive answer about my memory or some of my physical issues, so it is hard to set up rock solid goals at this point or know what to plan for in life.  Therapy has helped me learn to see this is a different way though.

The important thing I had to understand is that I am not defined by my abilities.  This is still hard to swallow some days, but it is important because if I feel worthless or useless, then life isn’t really worth living.  I am neither worthless nor useless, I simply have had to learn to integrate other tools into my life to help me.  As I go through the process of reevaluating my life, I am more concerned with people than things, quality than quantity, and love above all.  So, since I have value that I can add to the world, what role will I play to do that?

First, I am a mom.  I am not the best mom in the world (probably).  I forget a lot.  Still, my daughter is my heart and I want to be the best mom that I can be for her.  I love her to pieces, but my memory isn’t strong enough to keep her on track at school.  So my whole family helps me.  Now, “Mom” is a little different, so the role I play as primary parent has changed.  We get through it.

I am a minister at my church.  I have had to change how I do things there so that I can still be effective and of service to the church.  I don’t mingle as much as I would like to because people will hug me too tight or be wearing too much perfume, but I try to make sure that I call and text and keep track of people so they know I am thinking about them.  I still plan funerals, but I always make sure that I get everything double-checked.  I have had to shift some of my responsibilities, but the only role that got taken away was ‘worker’.  I like the role of being a provider, but even that has to take a back burner for now because in its place I have to be a patient.  That is almost a full time job and it is more work than one would think to juggle doctor appointments.

Goals have also changed drastically.  I had hoped to graduate with my Bachelor’s Degree in Music Therapy.  Now I go see a music therapist.  When it all came crashing down and I felt like I had nothing left the goals disappeared.  My means for reaching the goals I had set were gone.  Setting new goals without knowing what I can and can’t do is hard.  Again, therapy came to the rescue.  Reevaluating goals in THIS case means figuring out how I want to feel about my role in my treatment.  It is my goal to be an active participant in every step of my treatment and to advocate for my treatment.  Beyond this, I want to be an advocate for Chiari Malformation and Mental Illness.  A house?  Who knows?!  I need to get well first, that’s my goal.

This is an exhilarating place to be because hope is finally on the horizon.  I can’t make out its exact shape yet, but there is something there worth striving for after all this time of feeling helpless and astray.  I think this stage will probably last a while.  As I learn new information I am becoming more familiar with how to reevaluate all of these things because this process will take time and I have to remember to keep my mind flexible enough to find ways to overcome the obstacles that seem insurmountable.

If this is where you are, CONGRATULATIONS!  You have made it very far in a process that so many people lose themselves in.  Grief should never be the destination, but it is a journey to be respected, explored, and then left behind to draw wisdom from.  I imagine other people might be in this place for a while too because it takes time to establish your new role in life and the goals you wish to achieve.  It can take a lot of experiences and thinking to reevaluate life and to gain a new yet comfortable perspective and establish a new normalcy.

Definitely take you time with this stage as it will develop your new foundations and enjoy the freedom of creating a routine and lifestyle that work for you.  In time, you will pirouette to the last stage where you will find the solid footing you have been seeking.

Stage 4: Anxiety And Depression

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Was there ever a more perfect pair?  In my personal experience, depression digs the rut and anxiety makes you afraid to get out.  I have spent my life defining myself by my ability to accomplish.  The accomplishments themselves were not nearly as important as the ability to do it.  I COULD work on a car, I COULD landscape a yard, I COULD clean a pool, I COULD take 9 classes and work and volunteer and be a mom all at the same time.

As the realizations about my mental, cognitive, and physical status began to sink in, I felt like I sank into the earth.  Not able to do the things I was used to being able to do, I no longer felt useful.  The things I love became things I didn’t want to talk about or hear about.

I got tired of hearing that my friends were getting married, buying houses, going on vacations, living their best lives (*through my personal lens, which was very out of focus*) and here I was dealing with headaches, unable to use the bathroom normally, and unable to get through the day without multiple naps.

It was like the blackness that swallowed me in anger left me bitter and depressed and unable to see value in myself.  Then my eyes were veiled in bitterness and I saw value in nothing anymore.  Making it to the point where I felt like I was just existing was the lowest place for me.  Just the disappointment of opening my eyes everyday and coming back to the realization the ‘this is my life’ was changing my thought pattern and things were getting dark in my mind.  I couldn’t fix anything going on, so how was life worth it anymore?  So, I decided to seek help and get a psychologist and psychiatrist.

If intervention had waited longer, I might not have made it.

Interestingly enough, my psychologist focused on my anxiety.  If I was depressed about something I could get specific about, then she would turn to the anxieties surrounding it.  I have (as of writing this) been in therapy for 10 months and the one thing I always try to carry with me from therapy is that I am prone to try to repair and repair instead of looking for a new solution or viewpoint.  I am anxious to know if my health issues are going to be permanent but if they are, so what?  I have to learn to live with them.  This is obviously over-simplified, but I am always willing to at least try the methods and tools my therapist gives me to help look at my thoughts from multiple angles.

One way I do that is by writing.  If I am very anxious about something I will write it down and read it to myself and imagine one of my friends wrote it to me for advice.  Seems silly, but it works for me because I often feel like other people deserve better than I do, so it helps me put my thoughts into a more realistic perspective.  I deserve to be happy or safe or cared for just like any and everybody else.

Still, I have plenty to work on in therapy and I would not say I am totally out of this neck of the woods.  As my treatments change and we test and get answers, I will have other woes and fears.

Many people don’t realize that you can go through this whole grief process with every symptom (I have about 17) and after every disappointing specialist (I have about 14) because each new thing takes something else away that you now must mourn.  The feelings overlap and mix and can be overwhelming.  My support system and my medical team all keep a close eye on my depression and anxiety because I won’t be able to improve if I lose hope.

The worst anxiety I have is that I will have these symptoms forever.  Headache and nausea for the next 20 years is an unbearable thought.  However, I currently temper it by telling myself that I have made it this far without answers and whatever happens I have my family and my faith and I can cross some bridges when I get there.  I only have to worry about my headache today.  Tomorrow will take care of itself.

I am not saying these are the universal experiences of anxiety and depression.  I only know what I go through.  However you’re feeling it, I encourage you to seek professional help if you have feelings of depression and anxiety.  At least find someone who you trust to get your feelings out so they can be validated.  Depression is not a ‘phase’ in life, it is a stage that must be addressed when it is where you are.  Same with anxiety, it is a stage that needs to be addressed.

If you find yourself being the third-wheel of this strange pas de deux, try not to get caught up in their dance.  The spotlight burns your soul and turns you into a shell of your former self. Spend your time on this stage and figure out what is the root of your depression and anxiety and come up with a plan that will restore peace of mind to your life.  You may not get the diagnosis you desired, but there are people who have it worse in some way but have rediscovered the joy of living. I want to enjoy my life again and I want you to also.

Stage 3: Anger

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Don’t get me wrong, I felt angry about something at every stage and on a bad day, that anger is right there to hold my hand and seethe me.  Going through accepting your newly downgraded body/mind while dealing with the deficiencies of this magical gift is definitely anger-inspiring.

I thought about this young man and just the most intense rage would swirl within me slowly growing and swallowing everything.  In my head, his family didn’t even have the decency to have adequate coverage considering how often their son got driving violations.  I was also angry with the system about this.  How does he have a driver license?

The anger grows.

When I wasn’t able to hold things as well anymore it changed and became a constant companion.  Every time I fell.  Every time I stuttered.  Everytime I I forgot what the conversation was about.  Every time I just couldn’t get up.  Everytime I had a painful test.  Everytime I got no answer.

The anger can be consuming.  Many people get stuck at this step of grieving and it isn’t hard to imagine why.  Someone else changed your life forever, yet they get to live a normal life.  He got some traffic fines.  His parents’ car insurance probably dropped them.

The anger has no rationale.

People in their early 20’s are just idiots.  You shouldn’t be able to drive unless you can parallel park between 2 dimes with only 2 movements.  I should set their house on fire, bet they wouldn’t like how inconvenient that is (*NO ACTS OF ARSON WERE COMMITTED*).  I should sue them for the car their son hit me with.

Misdirection is a best-friend of anger.  In the end, I was angry that I lost all of my time spend at school, angry that my body felt weak and fragile for the first time. angry that I could never horseback ride again, and so many more things.  I was angry because I felt like he took that all away from me.  No apology, no offer to help, he hit me, drove off, and left me to a live a completely different life.

I still have my days.  I have had to come to terms with each angry thought individually.  They all deserve to be addressed.  Yet, some days I have EVERY SYMPTOM and my body is revolting against me.  Things hurt in my head that I don’t think people were made to experience.  Luckily we are built to endure even the most torturous pain inflicted upon us, internal and external.

I have a lot more peace about the accident and it’s outcome since I began therapy and have been able to work through many issues.  Still, I am human and at some point I will be angry.  The key is controlling it better and better each time so I can thing through anger and not have such a negative reaction to things that upset me.  There is a better way, we just have to be willing to learn.

If you are angry, I want to let you know that you have every right to experience the emotions you feel.  It is unhealthy to push your feelings down so please seek the counsel of a therapist or friend of whatever allows you to safely express yourself.  We all want to be strong, but our feelings are valid and deserve our attention, especially when they cause tension or stress.

I know how hard it is to break up with anger, but it is toxic.  Be angry but continue to move forward as this stage turns into a macabre venue to spend your time if you linger.  Learn to forgive, learn to let go, remember, it’s ok to be sad.

From here we move to the next stage that no matter how hard you practice, it’s wrong.  That’s ok though, it’ll be over eventually, right?

After the Conversation Ends…

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Me having coffee with all the people who understand me.

 

A year after the surgery, and I have come to several conclusions:

1. Only my family sees what I go through every day.  They see me in pain, when I am angry, sad, they see the outbursts, the cloudy days, the restlessness, and yet even they do not truly understand what I go through.  Nor would I ever want them to.  If given the choice, I would gladly take the pain for any one of them

2. I have about five friends who know the inner details of my life, and are my friends anyway.  My life can be so gross at times.  Just think, your brain controls EVERYTHING YOUR BODY DOES!!!  Even the stuff that you prefer to keep to yourself behind the bathroom door.

3. Pain is NOT A CONTEST!!!  I do not understand the pain that cancer patients go through.  They don’t understand the pain that amputees go through.  And they don’t understand the pain that I go through.  (I make the exception for those who have Chiari and survived cancer via amputation, or something similar.)  We each have a difficult situation that we have to navigate and chances are there is physical and emotional pain that must be dealt with.  We need to respect the journey of those we meet.

4. My pain/condition/malformation is NOT  a result of God hating on me.  CHURCH!  YOU NEED TO STOP THIS MESS!  My pain is not a reflection of how of feels about me or how I feel about God.  Every major player in the Bible had issues.  More importantly, all of them died, so even if Chiari kills me, I am just doing the same thing as my forefathers!

5. My physical condition is not representative of who I am as a person.  When a doctor sees me, I am a Patient.  To my daughter, I am Mom.  To my mom I am Daughter.  To my sister, I am Sister.  To the client, I am the Designer.  To the listener, I am the Musician.  To the diner, I am the Chef.  To the random person who sees me suffering from a debilitating headache, I am disabled.  Yeah.  What if I told you that I am ALL OF THESE THINGS AND THEN SOME?!  Like the fine diamond I tell myself I am, I have many facets, I am well rounded, and quite brilliant if I may say so.  And my carrots?  The food of the gods.

6. I am deathly afraid of meeting someone I like.  Before, I felt like I had so much other stuff going for me.  Now, I don’t work, I don’t go to school, and I am gifted with the headache that keeps on giving.  I have no self confidence because I dread explaining myself and my condition AGAIN to ANOTHER person.  I haven’t even gotten to the part where I break down when they decide they can’t deal with such a problematic relationship.  I also am aware that I have developed irrational fears.  Working on that.  (Please don’t leave me a comment telling me how what I feel is wrong and what you think  is better because of whatever.  My feelings are just as valid as yours.  Thanks!)

7. I may never be taken as seriously as someone with diabetes or major physical injury.  Somehow, seeing someone testing their blood sugar is enough evidence to be able to understand their situation.  Seeing the scars left from a horrible accident are reassuring that the person is actually in pain, as you can see the evidence.  I get no courtesy in this respect.  I get told that I must feel better because I look great!  They are oblivious to the 4 layers of concealer that I put on to hide the fact I haven’t slept well in a week because of a headache.  If I don’t wear the makeup, then #4 applies.  It’s a lose/lose kind of thing.

8. I would not trade this experience for anything.  I don’t like the situations I find myself in.  I still have scars on my head from when they removed some skin for an EEG.  I hate that I don’t know when or how long my head will hurt.  I hate that my daughter now has a mom who can’t remember what day of the week it is without a phone.  I hate that I can’t remember words sometimes and I feel stupid.  That said, I am very lucky.  Within 18 months of my car accident I was imaged, diagnosed, and underwent surgery for a condition that routinely stumps medical teams who are unfamiliar with it.  I have an extremely supportive family. I would have never made it through this situation alone.  I also now know what it is like to not really carry stress from day to day.  Because my memory is very unstable I wake up every morning with a clear slate.  That is a pretty amazing feeling.  I am forced to live today.  I can’t really plan for the future because I don’t know how I will feel and I can’t remember much of the past.  All I have is right now.  I wish I had known how to live this way years ago.  Even better, I will be able to use my experiences to speak to other people and spread awareness.  And that isn’t so bad.

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“I can’t believe it’s been a whole year!  I just got a promotion, what have you been doing?”                                     “Surviving!”

The world at large does not have a thorough understanding of recovering from brain surgery.  While their lives breeze by marked by accomplishments and milestones, my days are monotonous and almost indistinguishable from one another.  My memory started fading over a year ago, and I only have vague recollections of what has been going on in my life.  I have not achieved anything, and it makes for very awkward conversations.

Dreaming…

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Dreaming the dream!

Life is full of dreams.  They change and mature as we grow and sometimes when we are on the cusp of achievement, the dream dies.  I felt this way last year when my doctor told me I would need brain surgery.  Everything that I had worked for was snatched from my hand and I was left with what felt like nothing.  I could no longer sing arias or even hold my guitar.  And when I could hold the guitar, my fingers wouldn’t always cooperate.  After surgery, I got a ukulele to help me with retraining my fingers to listen to my brain.  It has been the most comforting item during this period of my life.  When everyone is sleep and I am wide awake, I can sing and play and feel like my voice is still relevant.  I may never go back to school.  I may never perform a solo again.  I may never be what I thought I would be.  I will sing though, and I will imagine all the people whose hearts I could have touched.