"You have a brain injury," he said.

Alea iacta est "The die is cast"

Because I just like history and this story in a recent sermon caught my attention. It spoke to me for some reason. 

 The phrase “the die is cast” (Latin: Alea iacta est) is frequently used to signify that a decision has been made or the events have passed the point of no return. It is attributed by the Roman historian Suetonius to Julius Caesar but have you ever wondered what’s the origin of the phrase? Here’s the story. In 49 AD, Julius Caesar led his army across of a small river of Northern Italy, the Rubicon river. “Beyond this river, no flags, weapons or soldiers shall pass” read the inscription on the riverfront. You see, because Romans were afraid of coups, there was a Roman law that forbade crossing the Rubicon river and thus reaching the capital city of Rome. Pompey and Cicero already warned Caesar that he should go alone in the city, not with his army of the 13th legion. But Julius Caesar knew his fate. Political intrigues and bureaucrats would have killed him if he went alone. On the other hand, under the Roman law, crossing the river with his army meant that he and his legionaries were automatically sentenced to death. So he made his decision to cross the river with his army and said the famous phrase “the die is cast” as there was no turning back. For the record, Julius Caesar not only did he win the battle, but in just two months, the future dictator managed to take over the whole of Italy with almost no resistance. And he did it with just 50,000 men. Source: https://theuijunkie.com/die-is-cast-origin/

FOMO is back

 New York Magazine cover states that "FOMO (Fear Of Missing Out)" is back.  As the world starts to open back up I find my own anxiety creeping back in.  My neck constantly creeping up to my ears, fatigue a never failing friend and migraine auras back on the rise.  As a person who has had to choose to miss out on things, for the last 16 years for her own mental and physical health, the cancelled activities were refreshing in many ways.  The guilt over not being there gone.  Sure I hated the reason for it.  The sickness, fear, death, pandemic. But perhaps I am more of an introvert than I care to admit.  I enjoyed the social distancing, not hugging, hand washing/sanitizing (which I was always fanatical about anyway.)  I enjoyed less running around to appointments and instead having 'telehealth visits' in my living room. I always thought it was silly all the appointments I went to that could be easily taken care of without the need for me to run here and there! Everyone was now talking about a "new normal." To me it was just "again." I think at first people had a bit more compassion for what recovery looked like. And then the "Covid fatigue" hit them.  Yup people, it is exhausting every single day still.   Covid may one day no longer be a thing but there won't be a day this side of heaven that I won't live every day with an Acquired Brain Injury as my new normal.  I may fake it pretty well and make it look 'easy' but I assure you no matter what you see or choose to see, the struggle is still very real. It might not look exactly like your injury does.   Maybe even more exhausting now because the 'already exhausting' has a new layer to it.  During all of this I found a world renown concussion doctor via Instagram.  He had a lot of great insight and really seemed to "get it," so out of desperation, I wrote him about doctors in my area he would recommend.  His rely to me was something like, 'your recovery is going to be profoundly different than a concussion and treatment very different.' Thank you doctor for seeing me as an individual. Thank you for recognizing that each of us has a unique journey and while we share similar struggles it may actually be profoundly different.  Yours may not look like mine.  You may have hated the lonely isolation, the cancelled activities, your only outlet. It's okay, it is your journey, not mine. But I'll come along side you (at a distance of 6 feet, of course), if you need me. 

All of the social distacing and isolation from others does not, however, make the deeps hurts before magically disappear. Mother Teresa once said, "Honesty and transparency make you vulnerable. Be honest and transparent anyway." Before my aneurysm I was a "peacekeeper" NOT a 'peacemaker' like I should have been, a "people pleaser" that hated confrontation. I felt very uncomfortable with no nonsense, gruff , military like personalities.  Being an off- the-charts highly sensitive person, I was used to a softer more sensitive approach to life. When I didn't agree,  the people around me listened and we had polite discussions.  I did not find much of this approach to life after graduating from college.   I took things too personally and had no "coping device" like those around me for this new environment.  So as you can imagine, I naturally felt largely unheard and misunderstood.  To keep the peace for a number of years I just went along with it trying to justify ri myself why I must be wrong.  I tried to act unaffected and "fine."  It was only my hubby I trusted enough to know the truth. And by the time I was brave enough too share, the hurt and uncomfortable feelings I felt, it seemed too late.  He had a lifetime of developing coping skills of listening but not taking things too seriously and then simply living his life mostly unaffected.  The other noted approach was to just laugh everything off and also go along my own way. These don't develop over night, andd neither of them were for me! What did happen in a matter of seconds was an aneurysm that flooded my head with blood and did some serious damage.  My filter was gone just like that. I started to disagree. I started to share opinions I never would have before. They came out with much less tact and Grace than they would have if I shared them to begin with.  In a recent devotion the title was "Hurt people,Hurt people." GUILTY! I carried a whole lot of hurt. I didn't mean to hurt others but it did. What was hurt was judged by others as hate. I have wrestled with this for over a year now, given it to Jesus and known in my heart it wasn't hate. I have wept and felt depressed. I have avoided people and witheld affection because I just couldn't be 'fake' any longer.  It was being uncomfortable. It was diagreeing without being heard. It was even grief.  Grief over the loss of independance. Being a married adult still being told constantly what to do and how to do it. Constantly being judged. Being told what was in my heart. When I was accused of 'being happy someone suffered a misfortune,' it cut deep and still does. Sure I had disagreeded with this person and their personality made me unusually uncomfortable and uptight. I even called the accuser the next day to clear the air.  Give them a chance to tell me they didn't really think I was such a monster that I could truly be happy about anyone's misfortune.  Sadly, the accuser stood by their accusation and has ever since.  Of course, I still hear things like, "you are such a sweetheart. We love you. We miss you." Really? I can't accept these things also knowing that they believe me capable of such inhumane things.  As a best friend told me, anyone who has spent five minutes with me would never believe that of me.  They would wonder why I was so upset and saying uncharacteristic things and recognize it did not come from hate but from hurt, very deep and personal hurt. "Sweet friend" she said, "you are not that monster and it is going way too far to believe that of you or, anyone with a heart for that matter."  My therapist saw through it right away and asked me if the accuser was mad at me.  At the time, I said that I was pretty sure they were not, now I think that they too were hurt that I didn't agree with someone they profoundly agreed with  unquestionably. If they said or thought it, it was truth. There was absolutely no room for someone saying, "It doesn't have to be that way!"

So, I conclude this with other wisdom from Mother Teresa and confess it is easier said than done......

Mother Teresa's Anyway Poem (slightly revised)

People are often unreasonable, illogical and self centered;
Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.

If you are successful, you will win some false friends and some true enemies;
Succeed anyway.

If you are honest and frank, people may cheat you;
Be honest and frank anyway.

What you spend years building, someone could destroy overnight;
Build anyway.

If you find serenity and happiness, they may be jealous;
Be happy anyway.

The good you do today, people will often forget tomorrow;
Do good anyway.

Give the world the best you have, and it may never be enough;
Give the world the best you've got anyway.

You see, in the final analysis, it is between you and God;
It was never between you and them anyway.

When it all just hits you.....................

Here I sit at home typing and processing.  It's the first Thanksgiving ever I haven't been with my family.  I love being with my family. They ground me and remind me who I am.  Amongst a pandemic and my vascular health concerns we decided to do what many others did today; simply stay home. I don't regret that decision and I'm thankful my extended family was able to do a zoom meeting, to see faces and answered prayers.  This year has not only been challenging with the health of hubby's father but it is not as well known that I had an uncle with a potentially life threatening blood clot, like another hour and this would have been a different post.  Then, I had a cousin survive a massive heart attack, no risk factors other than family history.  As I sat looking at all their faces and listened to them talk it hit me, profoundly.  I was grateful and overwhelmed all at once.  I sat there taking it all in and I'm not sure I even opened my mouth to say what I was thankful for. Honestly, I was struggling to process it.  And then it made me sad that I haven't been allowed the space to feel all of that.  Because of our location and relationship the sole focus has been elsewhere.  I was lost, got lost, ended up lost in the shuffle.  But, today I was reminded who I am.  Where I come from and the dear lives that I love so much, dear ones that have been understanding and poured so much of themselves into me, so many times. No questions asked(Okay, maybe a few that's a family trait).  It spoke life and softness around some annoyingly hardened edges of me.  I saw in living color family loving and caring and reaching across the valleys of life.  

And, just when you think 19 years would teach you something about a person, there is always more to learn.  When we met 19 years ago I distinctly remember the Thanksgiving plans discussion.  Hubs told me it was 'no big deal in his family. They would hunt all day and stop at Cracker Barrel on the way home.  I remember finding it a bit sad but we started going to my parent's. He would hunt with my dad then we would visit each of my grandparents. Still pretty low key, really.  Then my sister moved closer so we started a tradition at her house.  This year, sadly, neither grandparent can be visited, we aren't traveling so I expected we would default to "Thanksgiving is no big deal." So, I didn't stress out about it, not a bit.  I bought some thick sliced baked turkey at a deli and figured I'd do a couple sides and call it a day.  Hubs asks me first thing I wake up, "what appetizers are we having?"  WHAT!!!!!!!!!!!!!!!!!!  Thankfully, I'm a mild hoarder and always have some simple basics on hand so I did pull off a few unexpected appetizers and had planned a surprise pumpkin pie anyway.  So, once again my communication deficit bites me.  If only, I could process faster or learn to ask the right questions.  Don't assume or "the saying" (you know what it is) will indeed be true. Oh, and always keep a few appetizers on hand, incase you misunderstood along the way!

An my weak left side shows again!

Hope!

I'm already tired tomorrow!

 Recently, I had a conversation with a loved one about my continued fatigue.  I kind of thought people knew.  

Yes, I nap regularly even though I get 12 hours of sleep sometimes.  No matter how much or how little sleep I get of any quality, life still makes me extremely tired.  Doctors have explained it this way.  I still have to think about every single thing I do.  Every step takes careful planning still. Dinner still has to be sequenced.  I have lost the reserve to push past the fatigue.  It is simply gone! I have all new pathways and some of them are still a bit bumpy.  Oh how I try not to make a brain Injury my excuse for everything but I do have limits different than most. Whether you think I do or not. The filing cabinet in my brain has been dumped and I am still searching for all the papers carried off by the wind. Imagine how tired you would be if your brain didn't filter out light and noise and touch. If you felt like you were constantly in a game of dodge ball with all these things and also had to carry on like "normal". Carry on like nothing was constantly bombarding you.  Nobody knows the actual extent of damage the aneurysm caused.  There are no studies of survivors of burst aneurysms. Doctors would tell you those people don't exist.  Blood touching brain cells outside a vessel  kills them.  That is what they do know.  My head was filled with blood, this we also know.  Reports state I have, "significant cognitive deficits."  

Another loved one just this week, "but you'd never know you were struggling right now." Another Mercy on my life, for short periods of time I do rather well not showing the actual struggle.  But tune in and you'll notice it.  My left hand will curl tighter and tighter.  I'll struggle with balance, I huff more often or sound out of breath.  I begin to answer everything with, "I don't know." My left leg shakes and I start to loose eye contact when people are talking.  I desperately search for words and call things by the wrong names.  We all do it.  I just do it more now than I ever used to.  Nothing irritates me more than someone telling me I don't have a problem or it isn't as bad as theirs simply because they can't see me struggling.  I've been accused of not having the same degree of struggle and honestly, who really knows.  Perhaps I just have stronger coping mechanisms from working with autistic children. Perhaps, it's a good day for me. Perhaps, we have a different definition of struggle! My dad always said, "don't compare yourself to others."  I'm tired. I struggle whether you see it or not.  There are many times it is just worth the struggle.  It is worth the nausea, brain fog, headache and a body full of nerves that feel on fire. It is worth the left side tone and frustration. My mom reminded me of the words of the young missionary, Elizabeth Elliott.  If you don't know her story you really should look it up!!  Her husband was killed by the people they went to serve.  When her husband was killed they were very young and she had a baby to care for still in a foreign country.  When she asked what she was going to do, a wise person told her, "do the next thing." 

The 'survivor tree' in NYC (another great story)

So, every moment we just "do the next thing," whatever that is. 

Why the caged bird didn't sing

My devotions this week have been on control and anger. YIKES! Perhaps next week we will tackle, letting go. 

Growing up we were blessed enough to have horses.  But, horses eat hay.  Not just any hay but hay that has been well dried and never rained on.  This requires long stretches of hot, sunny days.   Now, I am heat intolerant and light sensitive with the whitest skin you've ever seen. Throwing hay requires long pants, and gloves. Forget the long sleeves, I just lived with hay prickled arms.  Hay was not exactly my favorite activity.  But, the thing I most disliked about it was that you could never make plans.  All summer our plans depended on whether or not there was hay down and ready to be baled.  I like a plan.  Perhaps that is one of the things I did like about teaching.  We always had a plan for the day.  Now mind you, I know I truly have no actual control.  Control is a lie.  

College:  That is when my terrible, unbearable, literally blinding migraines started.  So, life then became as uncertain as the migraines.  They popped up at the most inconvenient times. Will I make it to that final exam without one?  Can I make it home without loosing my vision? Substitute teaching was a nightmare on so many levels.  I was terrified of loosing my vision and having 20 kids I don't know to take care of.  Can they find a substitute for the substitute?? More uncertainty, more anxiety, panic attacks that went undiagnosed.  The beginning of a dangerous spiral that sabotaged relationships and stole away living.  

Marriage: both certainty and uncertainty.  I was certain that I married the right one.  I was 22 and obviously uncertain about being a wife, as in how to be one and not from the 19th century version.  Our entire relationship, previous to marriage, was long distance.  I never before saw the man I married on a daily basis. Just seeing each other every day was exciting.   We had a "plan." I was going to finish my Master's degree and obtain my permanent teaching certification while we got to know each other as newlyweds. I really wish I had this book back then. It's a book by Jim Burns titled,

" Doing Life With Your Adult Children: Keep your mouth shut & the welcome mat out."  It is everything I'd want to say in one title. So much hurt happened in those early years. I was told that I needed to withdraw from my Master's program, forget teaching, stay at home and have kids.  It was not a suggestion but a command.  What was probably intended in love was a selfish and unnecessary demand.    I believed that as a married couple we would finally be allowed the freedom to make our own decisions as husband and wife. Freedom to do what was right for our family.  We wanted a few years to just be married. We were so young and in no particular rush. It was not a matter of choosing one thing over another. We simply wanted some time and space for a few years! I wanted to make our way together, define us as a couple. Isn’t that what being a newlywed is all about? There is no way to sugar coat it, the commands given to us made me angry.  We were responsible, newly married adults. I had heard the words, "leave and cleave" uttered so many times that I actually believed it would be true. Oh, I always was a dreamer, thanks a lot Jane Austen (hehehe.)  I have also learned that I am a peace keeper not a peace maker.  And, believe me, there is a difference. When my brain had a filter, back in those days,  I just quietly and politely listened knowing my opinion would make no difference to anyone. I did not know how to establish healthy boundaries and allowed the hurt to continue.  Even to this day I have no idea what it would look like to be a peace maker in our situation. How I could have had peace and been at peace with those around me? I had always known the freedom to talk through things.  When that freedom was removed I had no idea what to do.  I was a caged bird, but my tune not heard. I simply had a different opinion. I only wanted to be truly heard. I wanted it to be okay that God had other plans for me.  I sensed it from an early age.  Im thankful I had a husband who heard and supported me when I had the courage to talk about it. 

Post aneurysm rupture living with a traumatic brain injury: These days, the chronic fatigue gets me.  The never knowing if I will wake up to a good day or an "unsafe,foggy" brain day.  I hate wondering if I'l have the energy to deal with the appointments and commitments I have made.  It's the not knowing, the feeling of spinning wildly out of control.  A favorite author recently did a devotion that really touched my heart.  Becky Wade, talked about the women carrying spices to Jesus' tomb.  Along they way they were rightfully concerned about who was going to move that stone so they could anoint Jesus.  When they got there God had already moved that rock.  All they were asked to do was bring the spices.  They brought the spices, the rest was not their concern.  Her point, just do what you can do. Bring to God what he asks you and let Him do the rest.  Keeping bringing those spices readers.  Maybe you are like me and the women with the spices.  I want to know all the details, have a foolproof plan and concern myself with it failing or letting someone down because I "didn't do it right." Just bring the spices!

He always showed up

Here is a post I found went unpublished until now.....................................................

In honor of Father's Day, in a very hard year personally and globally I thought I'd share what was on my heart.

At the funeral of a very dear man his children (and step children) said of him, "Dad (Pops) always showed up." These simple words were profound to me.  It was true.  He did always show up not just for his children but as a general rule of how he lived his life.  I am blessed to not only have a mother and father I can also say this about but  my sister, aunts and uncles and cousins.  It is a family trait I am so very fond of.  It would only be later in life that I would learn this is not the "normal" for many people.

I also sat there realizing this was no longer a reality in my life.  I still struggle with my energy level and have very different limits than most people my age.  My heart wants to be the one who, 'always shows up' but my brain limits me in very profound ways.  I find myself feeling like I need to explain this to people more than ever these days.  Since it's been 15 years and I can function pretty well most days, even people closest to me forget or get tired of my limitations.  I AM NOT MAKING THEM UP AND I AM NOT USING THEM AS A CRUTCH.   Honestly, I have grown very irritated by being told how I feel at any given moment.  I'm pretty good at understanding my limits most times. They are still very real and I need to take care of my own mental state.  I am frustrated every time I push too much and crash or get an anxiety producing migraine aura.  I don't want my body to tell me to stop, I'd rather pace myself and survive!

So, I am thankful for everyone who has shown up for me. I am thankful for the example my family has set and continues to live out and I will show up every sing time I can.  This is real post aneurysm life.  But, we are here to live it.  Keep on keeping on!

Photo taken by me!