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!