Stage 7: Acceptance

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WE MADE IT!  At least in blog form (right??)!

This is the last step in all kinds of grief (to the best of my knowledge at the time of writing this) and in my *PERSONAL* opinion it can be the most difficult.  See, I am not really at this step yet with what I am going through.  Maybe some things I have come to accept, but as a whole, nope.

So how do I know how hard it can be?  My brother was murdered when I was 18, I was stuck in my grief for about 15 years.  I got through all of the rest of it, but I had to be able to accept a few facts before I could move forward emotionally:

  • My brother was murdered 2 days before my birthday in an extremely violent manner.
  • There was nothing I could have done to prevent it or save him.
  • I can not bring him back.
  • I can not turn back time.
  • The future we planned will NEVER come to pass.
  • I did not die that day, it just felt that way.

That is only six things.  I lost myself for a long time trying to wrap my head around those six things.  That is a long time for six things.

With medical issues, I expect it to take time to come to acceptance of all that has gone on and may never end.  It isn’t as final as death.  It can be a lifetime of being in multiple stages of mourning my losses, however, the goal is to spend just as much time celebrating the wins.  The positive attitude is what is going to keep me getting through each day until I can accept all that my body has to offer, good or bad.

If you have been blessed to make it to this stage you deserve a standing ovation.  I can’t imagine what you have gone through to get here, but I do hope that you spread encouragement to those who are in earlier stages of grief and can’t seem to move forward.  We look to you as a beacon of hope to us all; that we can learn to accept everything that has happened to us and live a quality life without dragging the weight of loss around.

 

I just want to thank everyone who read all of these posts, or even just this one.  My goal is to spread awareness about Chiari Malformation and whatever else I can help be noticed for the community of people who aren’t “normal” in the brain, body, or both.  We may look nice and act proper, but we often suffer behind closed doors or even in public when someone must make a comment about “how” we are.  We are people with feelings, family, friends, bills, pain, love, humor, thoughts, ideas, opinions, style, and so much more.  Some of us have to figure out all of that all over again, but we appreciate the people out there cheering us on and encouraging us to do more than we ever thought possible.

Again, the article I got this from is here and I used it as a basis for my drawings and for this idea in general.  Let’s talk about out mental health so we can be healthy.  Grief is healthy when completed and not stalled.  If you are having trouble with loss, talk to your PCP or therapist, or someone in your support system.  There are a lot of ways that help can be accessed and we need to use the avenues that have been opened to us so we can help ourselves and the future generations.  No Shame!

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I’m Trippin’!

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The moment I realize my leg stopped working.

One of the issues that follows me in life is the sudden ceasing of my leg’s functionality.  I can just be standing there and it will just stop working.  More often it is when I am turning while walking.  My body just cuts off contact to a limb and boom, I have fallen.  It happened at church one day and I was so embarrassed because people saw, nevermind that I hurt my butt and arm.

This is just one of my medical mysteries and as time goes on, it is just becoming a part of my life.  I love the idea that I am now going to a brain health clinic and they know all of the different disciplines in neurology and are not afraid to use them.  They also aren’t afraid to say that there is the possibility that this will never be solved.

I suppose I have come to a place in my journey where that isn’t as scary to me as it was before.  I am figuring out what my limitations are and with the new therapies I will be going to, I may see some improvement in my quality of life.  In the end, I want to be able to enjoy my life and this place seems like that is their end goal; to bring quality back to life.

So, remember that you are not your illness and that there is joy to be found even on the days filled with pain and despair.  You might have something going on that causes you to be embarrassed because you can’t control it.  It is ok to have a multitude of feelings about it including lots of bad feelings.  That is normal.  At some point, if you are able, face those fears and ignore the faces and reactions of other people.  Eventually, you may learn to just laugh at yourself and accept that in some way you will never fit the “normal” standard.

It’s also ok if you don’t want to show the world your private life and so I can respect trying to minimize the issue and make it unnoticeable in most cases.  However you choose to handle it is fine as long as you deal with it.  Don’t let it be a hindrance to you in pursuing your goals and dreams.  Just be open to being creative because you might have to make some adjustments on how you achieve your goals, but you can do it.

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 5: Loss Of Self and Confusion

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All of those things I was depressed about and had anxieties over?  They have manifested into many questions about how I will define myself in the future.  With the bitter portion mostly cleaned out I am left with pieces of myself that don’t seem to be who I was.

I picture it like broken glass that spent time being smoothed by sand and time.  So many abrasive feelings had to come out and the changed the pieces of me that were left.  Time has left the glass warped and changed.  None of the pieces fit back together like I remember.  I often feel like I am living in someone else’s body.  Really, I have to internalize the idea that I am free to choose who and what I want to be within my limits.  However, I have to stop being scared to be something.

I am afraid of being broken again.  I have put myself back together so many times, but this has been the hardest journey of my life.  This is the one that seriously made me question the value of living in pain.  I still struggle with that question when the pain is very bad.  At that moment, I am a person who likely can’t even feed herself.  Is this who I will be?

I struggle with wondering what I will be able to do to earn an income or if the issues I have render me disabled, what will I do with myself?  Right now these are possibilities of who I may become.  That’s scary stuff.  I have always acted and done things KNOWING who I was.  I am not the same lady from a few years ago.  I have lost some physical ability and sometimes my brain goes on the fritz, but I have gained wisdom and patience so I don’t even approach things the same way.  So does that make me untrue to myself?  Why do I hold such allegiance to my former self?

She commanded power and respect.  She was not meek and kind.  Not really forgiving or tactful.  I don’t feel strong life that anymore.  I don’t feel like a fearsome woman with laser focus on what I want.  I just want everyone to love each other and be nice and thoughtful and respect my personal space.  Who am I?

I am underdeveloped right now.  My whole life has been altered and I am being created with my new life.  Piece by piece, day by day, trial by trial.

What keeps me so hopeful is that the change is taking place.  It is a long process, but I am moving forward and I am sure after I work out some more anxieties and other issues, I will be able to see who and what I am being crafted into and what my purpose is.

Should you find yourself on this stage, nothing will feel familiar. You might have to improvise a dance, but you may learn that you had a skill you were unaware of.  This stage is frightening and the house is empty except for the shadow of your former self peering at you from off-stage.  I just tell myself, I can’t dance like you (old me) anymore, I have a new dance, and that’s ok!

This stage can be scary but it opens you up to lay the groundwork for healthy recovery or living.  You deserve to ask yourself the questions and you can try to figure it out yourself or seek professional help for dealing with this confusing stage.  You will strip your emotions and idea of self to the core and from here you will spin onto the the next stage in this progression.

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?

Stage 2: Pleading, Bargaining, Desperation

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Now I went to God and made my petition known.  Not only was I asking for my old life back and none of what I was going trough, but I would read my Bible even more than once a day, and do more Bible studies, and teach more, more conferences, more Duolingo Spanish and Italian every night, Lumosity everyday, go to the gym, cook everyday for my family and other families, just please give me my life back.  If not my whole life can I have no headaches? Or can the nausea go away? Can I stop falling? Can I just write more.

One thing I feel negatively affects a lot of people is that they feel like because they are Christians or “good people” or any religion is that many people are made to feel like their illness or condition is somehow their fault.  Lets be honest here, you can be a Christian and get cancer. So can an Atheist. Neither deserves it more than the other. Sometimes people get cancer and cancer doesn’t care your religion, skin color socioeconomic background, or any of that.  I do not struggle with feeling entitled to better health because I am a Christian. However, I still want the pain to go away, and that is my point I guess. My beliefs have not blinded me to science, I knew there was a chance I would not recover well, I just chose not to believe it which made getting through this process more difficult.  

Sorry, just trying to ramble for understanding sake, but might not be working.

Anywho, at some point I ran out of things to bargain with.  At the worst of times I pleaded like a dying man for comfort and peace.  It’s a hard place to be because when it hurts so bad you think you might die, surprisingly, comfort and love become just was important as medical intervention.  

I don’t want to leave out desperation.  First, the desperate thoughts come. Here is a list of some of my own:

  • just go back to work and work until I am physically broken beyond repair.  Handle the pain by developing opiate relationship. (seriously, what is that?!?)
  • try to cause an accident that causes enough damage to be immediately declared disabled.  (the risks were too high with this; I could live an even worse, more painful life)
  • drive head-on into another car (I didn’t want to hurt anyone else tho, so nope)
  • take sleep aids all of the time and just sleep life away.  (my family would notice)

I acted upon none of these thoughts.  See, when I was in that place in life, those thoughts in parentheses were brought to my attention by the people I love.  I think this is why it is import to have a support group around you who you can speak freely and frankly to without judgement.  That does not stop the thoughts or change how I feel, it gives me perspective so I can see my thoughts from someone else’s eyes.  There are times I say what I am thinking out loud to my family and just hearing it lets me know that it is probably not a positive or productive thought.  

It is my body (and not someone else’s) so I have to keep dealing with it’s failures.  Coming to terms with the fact that there may be nothing that can be done to “fix” me is accepting my limitations, my perceived inadequacies, and loving myself in spite of the changes I have undergone.

So, it’s like finding a unicorn.  You really want to, but when you try, it gets difficult quickly.

From time to time I revisit this stage.  As a musician, I tend to crave new stages, but the familiar ones are so easy to glide onto.  The show must go on, so off I prance to the next stage that will grace me.

 

Liebster Award

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Your chakras are blocked. You need to meditate and focus the energy of the universe on your blocked areas so you can open the path of energy flow. Once energy is no longer pinned in you head, the headaches will disappear. **Okay**

I was nominated with for a Liebster Award and I am a little surprised it wasn’t for my actual long-form blog!  I want to thank Mom Life With Chiari for the nomination.  I enjoy reading her blog because it’s filled with the love of a mother, the talent of an artist, and the pain that life sometimes brings us.  Most of all, she is an encouragement to me as a mom and as a writer and always lets me know I am not alone in this fight.  I am honored to be nominated, thank you!

For more history and the Official Rules for the Liebster Awards please visit the page here.  But basically, someone will nominate you and they will have 10 questions for you to answer and them you want to put 10 random facts about yourself. Then, nominate 3 bloggers who influence you and come up with 10 creative questions for them!  However, official rules can be found (and maybe more easily understood) at the link above.

MOM LIFE WITH CHIARI‘s  10 Questions about myself

1. What’s your advice to a person thinking about blogging?

Go for it!  We get these ideas about how something should be and whether we can fit into a mold, but we are so much more than we imagine.  Blogging isn’t about eloquence or loquaciousness (although both help if you are writing about fancy stuff), it’s about putting your thoughts and experiences in front of yourself and in front of others if you choose.  Go for it.  The worst that can happen is that you find you don’t like it and you journey forth to find an activity that allows you to express yourself comfortably.

2. When and why did you begin to blog?

I first started blogging years ago when I worked on cars.  I stopped, but my when I was diagnosed with Chiari Malformation I had such a hard time finding people’s everyday life experience post-op that I started The Life Of A Music Monkey and that got me through a lot of lonely nights after surgery and it gave me hope that someone else would read it and not feel lonely too.  The blog I was nominated for came about when I rejoined society and people started saying crazy things to me like, “have you tried kale?”

3. Do you think there is a line to be drawn with blogging, when do you keep your personal life personal?

I feel that a blog should be what you need it to be.  In my own blogs I tend to share what many people might consider to be ‘too much’ but I usually leave my family business out of the blog because it involves other people.  I tend to not mention my doctor’s names or office names for privacy.  I can share everything about myself, I have no shame, but I try to afford the people I interact with a little privacy.  So, many of the people oin my blog have had their cartoon identities changed.

4. What have you recently done and loved because it made you feel ‘young at hear’?

My car case finally settled!!  So, I went to the salon and and treated myself to a new cut and mermaid hair with teal, emerald, purple, blue, and magenta.  Everytime I go by the mirror I smile because I feel like a beautiful unicorn mermaid princess.  However, I am a minister at church and my pastor has not seen my new multi-colored hair.  Pray for me, ya’ll!!

5. It’s summer time, what plans do you have?

We have a pool so I envision many lazy bbqs.  I am from Las Vegas, so I am doing a staycation with my sister and probably taking a road trip.  I have a lot of therapy appointments (regular, OT, PT, music, meditative) this summer and a few neurologists in different disciplines to visit, neuropsych exam, and a crown on my tooth.  Yay, adulthood!

6. What’s your favorite color and why?

Blue is my favorite color.  I think that it reminds me of the ocean and sky as a child.  Looking out I remember looking out and seeing the horizon and thinking that while the sky and the ocean were both blue, they we beautiful, each in their own way.  Moving to the desert, I miss the water, but the sky is almost always a clear blue that is just amazing as it changes through the day.  Every shade is beautiful, even the velvety blue midnight sky.

7. What do you most struggle with?

I struggle most with losing my ability to work and be a proficient musician.  I have lost important pieces of myself along the way.  I hope I can eventually find them.

8. What does it mean to be ‘in love’ for you?

I have never been in love, so I am not sure.  I imagine it is that same magnetic need to nurture and protect like with my daughter, but more intense and deeply intimate emotionally.  Maybe I will find out someday.

9. Are you a morning person or a night owl?

I am an owl-lark.  I go to bed at 2 am, I am up drinking coffee at 6am, but I take naps during the day.  My body works on a weird schedule.

10. Do you like tea or coffee?

I liken this question to “which child do you love more” and it is very difficult to answer.  Coffee is like a warm hug on the inside, but tea is like the reassuring embrace of Mom.  I feel that they are both superior in their own way… but have you tried Crio Bru?  Puts both to shame.

10 Random Facts About Myself

  1. I taught myself how to write with my foot.
  2. Certain sounds cause physical discomfort or can bring on a headache, even if they are barely audible.
  3. Everytime I am in charge of a funeral, once it has started, I make myself a cup of tea and reflect on my own losses and collect myself so that I can do a good job.  It is 15 minutes of quiet during a day that usually begins early and ends late.
  4. I spontaneously cry when listening to live orchestras.
  5. I look at the stars every night before bed.
  6. There is always music playing in my head.  Sometimes I tap my feet or sway to it.
  7. I record my life in blogs and on social media because I don’t really form memory well right now.
  8. I can’t stand the sound of my voice.
  9. I love climbing and hiking (although I can’t do it right now).
  10. I LOVE glitter and shiny things.

 

My Nominees

Wearefamily

Breeze Communications

Smiling Through The Pain

My 10 Questions For My Nominees

1. If you could pick up and move today, where would you go and why?

2. Where do your blog ideas come from?

3. If we all had to blog with pen and paper, would you still be blogging?

4. If you could transform into any one animal at will, which animal would you choose and why?

5. Do you have a set amount of time that you spend on your blog?

6. Do you have a blog ritual? (Mine is a bottle of water, a cup of coffee, and Twitter open so I can say crazy stuff.)

7. What is your favorite meal? (in detail, please)

8. If you could end one problem in the world, what would you choose and why?

9. How do you relax and unwind?

10. Who has been a positive influence in your life and how do you plan to pay that forward to the world?

 

Stage 1: Denial

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The lies we tell ourself to escape reality.

One thing I may not have previously pointed out is that we often go through shock before we make it to grief.  They are very different (*IN MY NON-MEDICAL OPINION*) because shock is the immediate response for most of us. We tend to handle it different ways in different situations.  For myself, I am usually able to stay calm and rational until I no longer have to be responsible for a situation, then I fall into pieces and hyperventilate and become quite useless.

The day my PCP told me I had to have brain surgery, I kept it together in the office, although she could see I was upset.  I walked to the truck as giant tears welled up and poured from my eyes, and then I got in, shut the door, called my mom, and though the anguish of a thousand souls I told her I had to have brain surgery and soon and I was scared and I released every anxiety and fear.  She got me quiet long enough to let me know that she was on speakerphone and my daughter was in the car. I immediately felt horrible. My daughter had never experienced me in that state of mind and now she knew it all as we were all on our way to her performance. We went, I watched her perform.  I stepped off to the side and called and told my job to put in for disability, and that was the last day I worked. Then, I went home with my sister and cried for three days straight. All the time. All day long. All night.

That is shock.

It wasn’t until about three months after surgery that denial became a thing.  We noticed that some things weren’t going back to normal. Still, I am a strong woman, I have made it through so much, I just figured I would have to work harder to get better.  According to statistics around 80% see improvement after five or six years. So, I am going to get better. At my six-month post-op, my neurosurgeon was concerned enough to recommend I go to the Cleveland Clinic because something wasn’t right.  Physically, everything healed as it should, but the memory and cognitive issues concerned him after six months with no improvement. This was followed by a steady decline in physical ability, memory retention, focus, and cognitive function.

I then bowed out of stage one and hurried to the next stage in my journey.

 

7 Stages of Grief For Chronic Illness

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The contents released in this series were inspired by this article: The 7 Psychological Stages Of Chronic Pain which I found last week while surfing the net (dig my lingo, guy) looking for how different types of losses cause different types of grieving.  When we lose a loved one, we are faced with the finality of death.  It is often a hard reality for most of us who have experienced the actual passage from this life.  Time usually helps these wounds close over and they become tender spots in our hearts.  Memories that can bring back tears and smiles.

When we lose our home or job or car we often feel violated, ashamed, or helpless.  I have lost all of these things and they can bring alone a grief that is very dark and scary in the beginning, but as life continues on and new opportunities arise we make it through the ending part of the grieving process and begin fresh again.

When you lose your memory the process becomes more challenging.  When you are in chronic pain the process becomes longer.  When you have a degenerating disease it just becomes a mess.

For me, the memory loss is awful because I am constantly being reminded that I forget things and it is like I am in a constant state of being shocked about something I already knew but forgot.  I don’t know how often I tell people the same things over and over.

The addition of chronic pain makes the anxiety in my life miserable.  See, I could be having a fairly painless day, but I know it’s coming.  Maybe a day, maybe a week. I am going to have an amazing headache.  I know in my heart that it is coming and it’s hard to tell myself to just enjoy today.  I feel like I need to prepare to feel the wrath of the Palm of God pressing the crown of my head onto my neck.  Then, like yesterday when a pre-headache symptom appears, I am just counting the hours until I am debilitated.

My body hasn’t died.  My body as I knew it and loved it are simply no longer present and I have been travelling a river of tears trying to get back to a dream.  I think my old body would want me to learn to love my new body and take the time to explore it’s bells and whistles.  It’s hard.  I just don’t know what I am or who to be.  That’s ok.  If this sounds kinda familiar to you, I encourage you to read and comment about your experiences over the next 7 posts.  It honestly is nice to know we are not alone.

I want to do things…

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The things I wanted to do today!

After the gnarley headache, the nausea is the worst symptom I experience on the constant basis.  It is usually low level, but if the weather changes or the headache increases, nausea will shoot up and become THE ONLY THING THAT MATTERS!  My daughter is hungry? NAUSEA!  Front door unlocked? NAUSEA! House on fire? NAUSEA! LET ME LIVE!!!!

For most people it is a feeling they may have for a few hours or days, a couple weeks if you are pregnant (unless you are me, then 40 weeks) but for me it has been over two years and really, I am sick of it (no pun intended, but good for me).  It’s that feeling of sick RIGHT before you actually throw up but I just don’t always throw up.  I pray that I won’t as it makes for a terrible headache/vomit cycle that can get out of control quickly.

The worst is when I have a day planned and NAUSEA hits me.  It is paralyzing.  You don’t move unless it is to a more laying down position.  I lay there thinking about the things I was going to do.  Some things are only available for a time like dinner with friends or sales, some things I can do later, but the worst things are the ones I have planned with my daughter because she gets the short end of the stick.  She often ends up supplying my ginger ale and ice and ice packs.

I want to be able to do the things that I plan but I am at the mercy of a body that is kind of confused right now.  Most days I get through it, I ignore it, I get ginger or drink ginger ale, but some days, nothing but meds can cut through the nausea and the meds come with their own set of problems.

So, if you know me and I tell you I just don’t feel good, that is actually code for, I could throw up at any moment.  I am just being polite.

Anxiety Bae

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My anxiety man.

The thing I have begun to realize about anxiety is that even in the same person, it can manifest itself in different ways.  In myself it is often a stream of depressive and negative thoughts that just get worse and more outrageous he longer the cycle continues.  Or, I will cook.  I will cook for hours and days, all sorts of meals.  Way too much for my family to eat.  It is a physical show of anxiety.  If I don’t have a headache, I will go to the gym and give all of my frustration and anxiety to the weights.

Still, at times I get carried away with my anxiety and we go somewhere off the deep end for a while and it takes some time to get back to reality.  It happens.  I work through it in therapy, and if you check out The Life Of A Music Monkey you can see my Monkey Countdown where I am working on getting my anxious thoughts under control and turning them around.  Everything is a process.

So, don’t be too hard on yourself if you have a day where the negative feelings seem to be winning.  You are still an amazing person with the ability to try again and win the fight.  I am still on the circuit, I am no champion.  I have not defeated the darkness and saved the kingdom.  Some days, I just sit in the forest of despair and eat guilt berries, just like everyone else.  Eventually, I get back to the task of fighting the battles and winning a bit, losing a bit, and learning a lot in the process.

The Forest Pixie!

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Michelle, the Forest Pixie

This is my next imagining!  I think this would be a good fit for me if fantasy could become reality.  I LOVE the forest and it has always seemed like a magical place to me.  The wind sounds different.  The air smells different.  There is so much that is particular to the forest and I enjoy my memories of days spent running down sun-dappled trails and living my best life.

As an adult, I don’t live in an area near the forest, I live in the desert and I don’t know if there are desert pixies.  I imagine it must be sand-fairies or desert ogres.  I need that humidity that only a large gathering of trees can provide.

Notice my wings are made to mimic the leaves found in the forest and help me to blend in to my surroundings.  Also, my stick arms and legs are green for added camouflage.  That stuff falling from me looks like pixie dust, but it is actually pollen that I got all over myself because I am a messy eater and I get overjoyed at the abundance of the forest.  Eventually, all of the pollen is gone and I don’t look so magical, but you can see traces of it around my mouth and on the front of my dress.  Some things don’t change just because it is fantasy!

My Life Clock

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My Life Clock

One of the scariest things to learn to deal with after surgery was that I was no longer on my “schedule” but I now lived according to my body’s needs and doctor appointments.  I tried desperately to cling to some type of schedule (I still do, like a fool) but it was in vain.  Remember having to go to a doctor appointment and then wanting to take my sister out for lunch.  By the time our drinks got there my body was slunched in the booth crying out in pain.  We had to get the food to go.  I felt so bad.  I wanted to take her to a nice restaurant and my body was not having it that day.

Now, there are certain things I to on schedule like take my meds.  I have alarms set so that I don’t forget.  I spend enough time each day drinking coffee because so far that is the only thing that stimulates peristalsis so I can get things moving in the morning. (poop, if you haven’t figured it out.)

Sometimes I will be having a lively conversation and then I need to take a nap now.  Not in a few minutes, not later, right this second I must get to my CPAP and sleep.  If I don’t, I become crabby, like a mix between an angry 2 year old and a crotchety 87 year old.  I am not pleasant at all.  God bless my family for putting up with this mess of a woman.

Often the clock changes as the needs of my body change.  I have been having a lot of headaches recently and no doctor appointments, so there are a lot more naps on the clock and reallys, a lot more blogs as I try to get ahead in preparation for my visit to the Cleveland Clinic.  I suppose that by the time this publishes, I will have already visited and will be drawing stories about that.

Love your body.  I mean take care of it.  Listen to it.  Follow it’s instructions (unless they are murderous, then see a therapist).  It will share it’s needs with you if you are willing to listen and give it a chance to tell you.  Remember that it’s needs will change and grow over time and that is normal.  That is life.

Chiari Secrets

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*Warning!!!  This post contains the word poop several times used in several ways.  If poop scares you, that’s strange.

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Chiari Secrets: Sometimes it doesn’t even work! It’s neurogenic!

The hidden life of chronic illness can be one filled with horrors unimaginable. I had to see a Gastroenterologist because sometimes my body won’t poop.  The poop is there, I explain, but my body does nothing with it, no urge to go.  Then all of the sudden, I have 45 seconds to make it to the nearest restroom.  There is no warning, just the full strength peristalsis of my colon gone mad with power.

Oh, but once the madness begins, it only gets worse.  First it feels like my body is turning inside out. Then we get to the best part!  Everything just stops!  Right in the middle of the process, my whole digestive tract gives up and plays spades.

Just push, you think, right?  HAHAHA, you’re so cute.  That is a Chiari problem.  That can put a little too much pressure on your brain stem and think parts and you can have a bad reaction.  So a little push here, a little white-out for a second.  A bigger push there, I have become sick to my stomach, taken off all of my clothes, and am on the verge of blacking out and making an awful mess.  (Ask me how I know…no don’t.  It’s a sordid tale)

So, the Gastro asks about my diet, I tell him I eat plenty of fiber, I record my water, I eat vegetables and fat.  I also tell him that this is all much worse when I have a headache.  With sad eyes he looked at me and told me that there was nothing that he could do for me.  Any medication he prescribed would make something else worse and really, the problem sounded neurogenic and needed to be looked at by the Cleveland Clinic because this was a neurological issue that happened to affect my digestive tract.

I have now heard this many times from many doctors and it really puts a lot of pressure on these doctors to find a cause for what is happening all over my body.  As of the writing of this comic I have 39 days.  When it is published I will have 6.  I am wondering everyday if these doctors are good enough to really help me, and my faith says they are.

I know it sounds crazy, but I just want to poop like a normal person again.  Like I did before the brain surgery.  Like I did in the Before Time.

Check out The Life Of A Music Monkey

The Wild Michellicorn

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Michellicorn: the power of awesome!

I don’t live much in a fantasy world, but I have loved unicorns ever since watching Legend back in the day.  I also watched a lot of The Last Unicorn.  I could always picture myself as one of these magnificent creatures; endowed not only with the grace and strength of a horse but with magic in the form of a breathtaking horn set high upon it’s regal head.

Yeah, very into that scenario in my head.  That’s not a cutie mark on me, that is the brand from the music farm that I live on where we all sing in harmony and our magic is harvested to make pop icons.  Not how I thought I would spend my existence as a unicorn, but it is good money and the hours are awesome so I can take care of my growing filly while earning some carrots.

I should have given myself wings and been an alicorn, but it’s too late for all that now.  Now we just look at this picture and all be a little thankful that I am not a unicorn as I see them because I look kinda creepy, like “I would take you to town, but I would also go through your bags while you are sleeping” kind of creepy.

I imagine the freedom of running through open fields can’t be beat, unless you are an alicorn and can also fly.  So, there’s that.  I hope you have enjoyed Michellicorn: the power of awesome!

Don’t forget to visit The Life Of A Music Monkey my blog on life with Chiari behind the veil.

Self Love Powers, GO!

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Anime stick Michelle

I call upon my self-care kit!

Ya’ll know 2018 is the year of self-care.  So, you see, I try to take time out of every day to to do something nice for myself.  Sometimes it’s a good foot bath or a nice nail job.  Other days, it’s a face mask and drinking coffee while listening to some nice music.

None of these things give me superpowers or make me young and beautiful again, but they remind me that I am worth spending time on myself. I am happy that I will at least be hydrated and have smooth skin and good smelling feet.  What else do I really need in life at this point?  I can’t get anything, so I may as well care for what I have!

Even these blogs help me feel better about the life I am leading and how I spend my time.  I don’t keep my thoughts for long, so I draw them and write them down.  I will forget this and come across it later and think about how silly I am!  It is worth it for the sake of knowing in the future that I have been working harder to get myself to a better place!

Please, take the time to do something you love.  Something that benefits you and no one else.  Fill yourself up with your love so you have plenty to pour out on other people.

Also, check out The Life Of A Music Monkey

Out There…

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Out there…

I enjoy blogging and especially this comic because it is just a fun expression of my life.  So, I like to sit outside at night, and last night I started imagining myself as random fantasy creatures.  Here and there between my other posts, I will post my series of  wild imaginings!

Eternity

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Waiting for my next appointment like…

For 27 months my life has revolved around going to doctors, imaging, testing, therapy (of all kinds) and it has been a neverending schedule of this.  It has been a couple of months since I went to a doctor aside from my psychologist and my speech therapist.  I am waiting for the big appointment.  The one I have been after for 18 months.  The one I have been electrocuted for…several times.  It’s only taking an

ETERNITY!

I am getting involved in some other volunteer activities and slowly trying to figure out what I can do, what I want to do, and where I want to be.

For now, though, I wait.

You’re Not A Doctor…

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You’re all not doctors!

One of the areas in my life where I am quickly gaining knowledge is compassion.  I was JUST beginning to think that I had a handle on it, but the further I get from surgery and the more normal (whatEVER that is) I “look”, the more I see where we fail each other.

Just because I look fine and I have not lost my intelligence or my moderate knowledge of things and stuff, people think I am doing great.  Of course I can have a conversation with you about how a combustion engine works and ways to make it most effective with the least waste of energy, but I open the spice cabinet almost every times I head my coffee up in the microwave.  Every single time I wonder where my coffee is.  Then I remember, I am not heating it up with spices, I am increasing the temperature.  Try the microwave.  There it is.  Or the day I was getting ready to go out and wondering why my boot felt so weird.  My daughter brought me my boot and removed the glove from my foot.  I laugh a lot at these events with my family because we are all scared of what they mean, and we don’t want to give up hope.

Yet people hear my witty banter and think I have no problems.  So if I don’t look well, they ask, and I’ll tell you if I feel like vomiting, or my stomach hurts, or my head feels like it is in the process of a slow motion explosion.  Then people advise me on what they think the best remedy is.  You know my favorite is Kale.  Apple cider vinegar mixed with water twice a day.  Just give it all up to the Lord because by his stripes you are healed. (I hope my fellow church-folk didn’t think they would get away.  Y’all the worst sometimes.)  All of these answers I get without just a listening ear.  Now, I just tell people I’m alive and go one about my business if I don’t avoid them altogether.

None of my doctors will see me right now, so maybe it’s a good thing that I am running into all of these people who know everything.  We are waiting for the Cleveland Clinic visit because no one can fathom what is happening to my brain.

I know this though, you probably aren’t a doctor.  More importantly, even if you are, people need comfort and validation during difficult periods in their lives.  Stop giving so much advice and give some compassions, concern, love, attention, and care.  It will help the people who need it so much more.

Also, check out The Life Of A Music Monkey to read about the highs and lows of my errday Chiari!

The BOSS

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The Solution

One of my issues in life is not feeling like I am able to do enough stuff.  I enjoy filling my life up with things to accomplish.  So, I recently had a conversation with a friend that I know speaks from the brain.  I am not saying he doesn’t have a heart, but he does not let his emotions cloud his sound judgment.  I went to him with my feelings, knowing he would give me back factual information and cut through the ambiguity of my emotions.  while he said many encouraging things, the craziest one was to get a part-time job.  My medical team and my lawyers would kill me.  My body would give out.  I don’t expect him to know all of the details concerning my condition, however it got the wheels turning, and THAT is what I needed from him.  I am a woman of many talents and while many of my body parts are failing me right now, I have not given up the hope of going back to living a semi-normal life.

That takes money.  While I languish, waiting for disability, I feel very useless.  So, in his eyes, getting a job will fix some of those problems.  Still, I can’t work by someone else’s hours or by their expectations of my body.

Then it dawned on me.  I have been a business owner since 2010.  I ended up having to get surgery on my nose and throat shortly thereafter and then the accident and the brain surgery, but I don’t need to get a job. I’m a freaking BOSS!  Hahahaha.

He told me to figure out what I was still good at, I bet I can still do loom work and I would love to design a set of handbags.  So, sometimes, you have to go to someone who sounds like they are being harsh (he never used a harsh or condescending tone, he is always very matter-of-fact and pleasant in delivery) to force you to take that really hard look at yourself and say what have I been missing?  This person said this, this person said this, and how do I out it all back together?  Well, I put it back together and now I am getting ready to reopen the creative doors of Haus Of Simeon and I am going to not get a job, I am going to create the job.

Have faith in yourselves, my lovelies!!

Also, check out The Life Of A Music Monkey because I am up to some fun stuff over there talkin bout Chiari and right now anxiety and how I am working through some of my scariest moments of anxiety.

Hi There!!

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“EttpzO1iGs0w” Hi!  My name is Michelle.  I have Chiari Malformation and I had decompression surgery.  If you have never heard of Chiari, that is understandable as most people have not.  It happens in about 1 out of 1000 births but it is not always symptomatic.  So, when I tell someone about it I tend to have an interesting conversation.  I decided to start making little comics about these conversations and I hope that it will help people to understand what they sound like from my point of view.  More than that though, I hope to give you a  glimpse into the life of someone who has a hidden illness and is just trying to figure out life.  Stick figure Michelle and Chiari brain will help me tell my tales.  I will introduce them now and stay tuned for Saturday, July 23 when they begin their journey.

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