On Being Sexually Assaulted While Having a Seizure, Reporting It, and the Aftermath

I never thought it would happen to me.

I certainly never thought it would happen at work.

When it happened, I reported it.  Immediately.

There was an investigation.  The investigation did not include interviewing or even talking to me.

I was not believed.  The person who did it did not confess, and I could not say with certainty who had done it because it happened while I was seizing. No one witnessed it because it happened so fast in such a chaotic atmosphere. So that was that.    

And I became the problem. And the problem needed to be moved.  So I was. And I feel completely iced out by so many I thought would back me up.

This is why people don't report.  

It appears to be a burden to support those who are victimized.  You don't want to get others in trouble.  You certainly don't want to get yourself in trouble.  

Believe victims of sexual assault. Stop protecting perpetrators.  

On Having a Seizure Disorder

 On May 7, after having a full, wonderful day, I came home and had my first ever seizure.  It was terrifying.  I thought I was going to die during those strange three minutes.  I didn't have any more after that.  At least, not that night.

The next day my husband and I were out running errands when a second one hit.  Again, terrifying.  We immediately came back home.

An hour later, after having my third one in less than 24 hours, Chris took me to the ER.  In the ER waiting room, I had another one.  They immediately sent me back, where I started having seizure after seizure.  They gave me strong drugs, and then, for three days, I remembered nothing.  

Apparently I was air-lifted to a hospital in Lubbock.  I woke up in the neuro unit, confused, and being hooked up to an EEG.  I was on the EEG for 24 hours to see what type of seizures I was having.

I didn't end up having any more seizures in the hospital, so there was nothing for the EEG to see.  I was told I was having "Pseudoseizures".  I took that as meaning I was not having real seizures.  It appeared to be because I had recently been pretty sick, possible causing the freak seizures. My meds for other health issues were bumped up because they could help keep any future seizures at bay.

So I went back to work.  I worked Friday, and I worked Monday.  And that Monday, I had a seizure at work.  An ambulance was called, and I ended up back in the ER.

At this point I was put on epilepsy medication. And that's when life became very, very dark.  The epilepsy meds messed with my moods, clouded my awareness, and left me in a state of constant confusion.  And still, the seizures continued.  They happened almost every day, sometimes multiple times a day.  I was unable to return back to work for the remainder of the school year.  I hit my head a few times.  My dear, wonderful husband, would often have to carry me if I wasn't in my room, or administer Emergency Meds if the seizures didn't stop.  I ended up back in the ER multiple times.  Lots of IV's, lots of oxygen, lots of tests.  The seizures just wouldn't stop.

After about a month, I had to go through a five day video monitored EEG.  I had fourteen seizures within the first 48  hours.  It was awful.  Brutal.  Exhausting.  

By the third day, I was off all medications that could be contributing or even helping the seizures.  Strangely, I was feeling better.  Significantly better.  I stopped having seizures.  The neurologist who had been monitoring my EEG came in on the fourth day and let me know that my seizures were not epileptic in nature, but I had a disorder called PNES.  I was handed a book, a lengthy, reassuring explanation, and told that the only way these would get better was through intensive trauma therapy.  He asked if I'd been through anything traumatic.  I laughed.  There was plenty.

So my brother, who'd been with me the full five days of the EEG, took me back home, where I found my husband waiting for me in the driveway.  He gave me a huge hug.  Then, as I was saying hello to my kids and my dog, the doorbell rang, and my twin sister came in through the day.  I hadn't see her in over a year and half because of COVID.  I almost had a seizure when I saw her, but luckily it subsided and she just got a tearful, long hug.  The combination of my husband, my siblings, my kids, my dog, and a lot of sunshine and exercise.  The seizures started getting much better.  

Finding a therapist who specialized in what I had was difficult.  It took another month before I was able to find one.  I was diagnosed with PTSD, and the trauma therapy began.

School started, and about once a week, I would have a seizure at work.  At that point, I got approved for FMLA to have one day a week to focus on my trauma therapy.  This helped significantly.  For three beautiful weeks, I had no seizures.  

And then I had one at work.  And the next week I had another.  And the next week I had another.  And that week was this week, when I had a seizure in front of my students. I HATE that they had to see me like that.  

I have an aura that precedes my seizures.  The aura rarely leaves me.  I'm almost constantly trying to divert my thoughts and body into avoiding "giving in" to the aura and having a seizure.  The aura is very strong, very uncomfortable, and very unsettling.  When I have a seizure, it's because the aura is so strong, and so sudden that I don't have time to try and divert it.  Really, diverting it just means putting it off.  The seizure will eventually happen.  I just don't always know when. 

I had never witnessed a seizure before having one.  I've found that most people really don't know what to do for someone having a seizure.  Some people, trying to be helpful, make the seizure last longer or cause me to have clusters of seizures.  Here's a few quick pointers:

1) The person having the seizure is most likely very aware of what's happening around them.  We can hear what you say, feel when you touch us, and can tell if you're calm or panicked.  We just aren't able to respond because our body is completely under the control of the seizure.

2) It's imperative that the area around a person having a seizure is clear, and that something soft be placed under the person's head.  The worst injuries I've gotten from seizures were from furniture I was hitting up against or from tile if my head was not protected.

3) Once the area is cleared, PLEASE DO NOT TOUCH US.  Even trying to "calm us" can send the seizures into longer periods or clusters.  PLEASE DO NOT TRY TO HOLD US DOWN. I cannot begin to explain how much worse this makes the seizure.  Our bodies will just continue to move until the movements of the seizure can finish.  When you hold us down, our bodies (and minds) will feel even more out of control. 

4) Please do not call an ambulance unless the person doesn't have a history of seizures, if the seizure lasts longer than five minutes (each individual, not as a total) , the person seriously injures him/herself, or the seizures just won't stop.  Seizures can happen in clusters (I usually have 2-4 at a time), so beyond 6 or 7.  Ambulance trips and the ER typically are much more harmful (and add additional trauma) than helpful.

5) We won't be able to communicate for a bit once the seizure(s) are finished.  That doesn't mean we can't understand what you're saying.  

6) I didn't think I would have to say this, but please do not take advantage of a person's body who is having a seizure. I've been touched inappropriately while having a seizure (not by my husband).  I cannot tell you how disturbing that is, especially when one then has to report the behavior.  

People dealing with PNES feel a lot of guilt.  We feel guilty for the disruption it causes in our lives (which then, of course, causes disruptions around us).  We feel guilty for having them when they're non-epileptic.  We feel guilty for the trauma we are causing others who are forced to witness it.  We feel guilty for what this disorder is doing to our loved ones.  

Grace in these situations is an absolute gift.  I have rarely experienced anything but grace so far.  Most of the lack of grace for myself comes directly from myself.  It's hard to be such a completely unreliable person.  

I'm still in trauma therapy.  It's hard reliving the traumas of my life (which you inevitably must do in order to get better), but I know it's helped.  PTSD is complex, multilayered, and causes a variety of symptoms, mental, emotional, and physical.  The PNES is yet another symptom of the PTSD, and both require a marathon mentality to treat, not a sprint.  I want it all to be over, but know that the only way for it to even get better is through the trauma therapy, the support of my family, friends, and coworkers, and by the grace of God.

On Moving to Lovington

It's been a hard two years.  Health wise, house wise (two floods!).  Add in a global pandemic, loss of jobs, loss of health insurance, loss of direction, and that's the Tiner family in 2020.  

We've been waiting for God's direction and clear will in our lives for awhile.  Chris's last day as an associate pastor for Lake Houston Church of the Nazarene was July 31.  My last day at Elm Grove Elementary in Humble ISD was August 2. We'd been self-quarantined to the house for 6 months because of my health, since there were still way too many people in the Kingwood/Houston area who didn't take COVID seriously, upping my risk as an immunocompromised person of contracting the virus (another reason I had to resign from my job).  

We were waiting.  We were waiting on God.  Our prayer from the beginning of knowing that Chris was feeling called to transition from youth/worship pastor to lead pastor was that doors would be opened wide that we should walk through, and cemented shut that we should stay out of.

We started getting really serious about seeking out lead pastor positions in March.  Opportunities came, and went.  And we kept praying the same prayer.  And doors were cemented shut.  Over, and over again, they were cemented shut.  The days of a paid associate position were coming to an end.  My days as a paid educator were coming to an end as well, although I didn't know it at the time.  I cried out to God often, sometimes in despair.  But we kept praying the same prayer.

Then the opportunity floodgates opened.  Ten churches were suddenly considering us.  I say "us" because even though it's Chris that they're hiring, churches always see what the spouse and family are like as well.  We had several informal interviews, an informal visit, and then suddenly, we were onto formal interview prospects with three churches, with seven other churches calling and looking at Chris's resume.

And one of those felt right from the beginning.  And that church was Lovington.  Lovington First Church of the Nazarene, also known as LovingtonNaz, located in southeast New Mexico.

We kept praying for the opening or the closing of doors, and with Lovington, wow, did God (once again) show his faithfulness.

With Lovington there was always, ALWAYS this overwhelming sense of peace.  A few weeks after the first informal interview, we had a more formal Zoom interview, and then drove over to Lovington to have a more formal interview with the board, and Chris preached.  

Before the trip, we knew that I would have to have a job to make finances work.  When I looked on the school district's website, there was nothing music related.  The only thing I thought I might be able to add a certification to was high school Social Studies.  So I was taking the practice Certification Test, when Chris came to me with a text from the board secretary who had contacted the Lovington District Superintendent.  There actually WAS a music job available...an elementary music position for a 2nd and 3rd grade music teacher, but they hadn't been able to find an acceptable candidate for so long that they'd finally just taken the position off the school district's website.  I cried when I got that news.  A job that didn't exist for me suddenly existed. They arranged for me to interview while we were over there the day after Chris preached.

We arrived in Lovington.  I became skittish when I found there was no coffee shop open on Saturday mornings (stupid, I know!). This was the first thing I brought up at the board meeting (great lead-in, Steph!).  They happily informed me that there actually was a new coffee shop being built and would be open in the next week or so.  So yeah, it was stupid, but they accepted my quirks and made me feel welcome.  The board meeting went well.  They let us be ourselves and were gracious as we shared our testimony.  It really was a lovely time.

The next day our family helped lead worship and Chris preached.  The congregants all came in masked, which was a huge relief to me.  I know many see masking as unnecessary...for someone with my health, it is an act of love and compassion.  It was a wonderful service.

Later than night we had an outdoor, socially distanced (and masked when not eating) cookout where we could get to know the congregants more and they could get know us.  Again, such a wonderful time.  They were so welcoming.

The next day, I interviewed for the music teaching position.  New Mexico has significantly more stringent laws and regulations for COVID than Texas.  In both of my schools, there is currently a 1 to 5 teacher to student ratio.  Grades 4 and above are online.  I won't be teaching music yet because it is considered a more dangerous subject to teach, and the teachers need classroom support, which I'm happy to provide.  I was offered the job a few hours after I left (providing Chris got the job).

 Both the board and the congregation approved Chris as the new pastor the next weekend.  It was such a happy, happy moment for our family.  Kadee Joy in particular had LOVED Lovington, and had been so welcomed by the teenagers of the church.  We felt so confident that God had brought things about in such a miraculous way.  Chris said yes to answering the call of the church.

After a crazy week and a half of packing (with the help of friends and members of Lake Houston), we got the house in Houston packed up and it is currently getting ready to be put on the market.  We moved into the parsonage the church provided for us.  They've welcomed us with meals, help moving in, messages to check in on us...It's been great.  Chris had his installation service on Sunday, and I started my first day yesterday.  We're still trying to get the kids completely enrolled in school (Kadee Joy and Luke are good to go, but Andrew and Jeffrey are taking a little longer because Special Education is always more complex, particularly in the current educational climate).  Today was thrown off by having a bizarre ice/snow day.  Welcome to southeast New Mexico!

I just can't begin to say how thankful I am for the many, many prayers that have brought us to this point.  We are so, so happy and grateful to be in Lovington.  

"Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is--his good, pleasing and perfect will."             

Romans 12:2

"I am not saying this because I am in need, for I have learned to be content whatever the circumstances.  I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength."                

Philippians 4:11-13

The Lord Gave and the Lord Has Taken Away.

 

Months of Isolation:  Six, with a few exceptions like when we had evacuated due to Hurricane Laura, and when we went a visited a city that had a church that was potentially interested in bringing us to get to know us to see if we were a possibility to fill a lead pastor position.  

What have we lost?

Our home church.  It's not that we're not welcome to keep "attending."  It would just be weird for us if we did.  Churches are weird like that.  When you're on staff, you're different than if you're just a layperson or regular member.  I've continued to attend Women's Bible Studies off and on, which I'm grateful for, but that's about it.  

Our jobs.  Chris's was not by choice.  It was because the church simply could not afford to keep him on staff due to COVID related financial issues.  This is not an isolated incident.  Millions of Americans are in the same boat.  Mine was by choice.  I couldn't subscribe to what the district was asking me to do, didn't believe it was safe, couldn't say it wasn't safe, and resigned.  Again, not alone.  Thousands of  teachers are doing it.  The Today Show got a hold of my story thanks to my loud mouth Canadian twin sister and her large Twitter following and interviewed me and several other teachers about what lead us to resign, which you can read here.  

Our schools.  My loss was a sense of community I felt with my teachers. They are facing an impossible task of trying to teach while trying to keep themselves and kids safe.  Some teachers had horrific numbers of children they're trying to educate with no help or relief in site.  And I'm not there with them.  And I hate that I'm not there.  And I fear they hate me, too, because I abandoned them.  My kids aren't able to see their friends, get the best kind of teaching (face to face...yes, it's the best for my kids).  I'm not apologetic about it, because I know it's the right thing to do for our family with the pandemic still happening, but it still stinks.  I loved our schools.  All of them.  

Our home.  No, we're not being evicted.  But when you flood twice, and hurricane season is not over, you lose your connection to your home.  We still haven't put things up on the walls.  We know that we'll probably be moving as soon as Chris gets a job as a lead pastor, and the South Texas District we're a part of doesn't have any openings.

Our faith in leadership.  We feel let down by those who are meant to protect us.  It feels like politics have taken over a global pandemic, the treatment of those on the margins, and certainly those sending large groups of people back into dangerous situations like schools in COVID hot spots.  A lot of people appear to be doing just the basic minimum, so without protections being put in by the government (mask mandates, numbers of persons allowed in spaces, etc), simple social responsibility just doesn't happen, which leads to our loss of...

Humanity.  Empathy for others seems to be at an all time low.  For all those who are against teaching Darwinism in school, survival of the fittest in a global pandemic seems to be a really good idea to them.  And I'm one that probably wouldn't survive.  It's hard to feel loved from people who are okay with you dying for the sake of the economy.

One thing we haven't lost:  Our faith in God, his faithfulness, his timing, and our citizenship in heaven.  None of those things can be taken away by politics, a pandemic, people, or living in one place or another.  We have lost much, but still have Him.  And that it ENOUGH to be thankful for.

Quarantine and Breaking Free

On March 7, 2020, Quarantine began for our family.  I had a fever.  I had just returned a week and a half before from a visit to Oregon from my paternal grandmother's funeral.  I just didn't feel good. Coronavirus was just starting to be in the news because of outbreaks in Washington State.  I decided, out of an abundance of caution, to stay in my room.  I stayed home from church the next day as well.

March 7, the fever was accompanied by shortness of breath and a dry cough.  I became more concerned.  Chris was out of state for a work related event, and it was Spring Break.  Kadee Joy stayed at home while I went to my doctor's office.  I saw the first signs in the doctor's office that noted if you had certain symptoms and had recently traveled (all of which I had) to let the front desk know.  I did, and the lady next to me freaked out.  I was handed a mask, and sat by myself while freak out lady went on and on about how she couldn't get sick.

Wearing a mask while having shortness of breath was a new experience.  As a matter of fact, I'd never worn a medical mask.  I became unable to breathe.  I called out for help.  I was taken back to a room and administered oxygen for the next hour and a half while the doctor's office called around to various county and state agencies, trying to figure out what to do with me.  They could get no answers.

I was finally sent to the nearest ER, where I stayed with the general population, still unable to breathe, and was met by the reality that these nurses were unmasked, and didn't have enough masks to give me, as though realized I definitely had bronchitis, but didn't have the ability to test me for coronavirus.  No one did, yet.  But no one would tell me that day..or the next...or the next.  Finally, that Friday, I was able to get tested.  It came back negative, after I'd been quarantined in my room for 12 days.

Whatever virus I had ended up lasting for 40 days.  I ended up needing hourly nebulizer treatments, inhalers, two more hospital visits, two courses of steroids, another test, and a visit to the pulmonologist.  The fever lasted the entire time.  Finally, after the last course of steroids, the virus went away, leaving me very weak, but finally able to take a deep breath.  I was finally able to sing for my students, who I'd been giving online activities to and joining in online classes as much as I was allowed to.

Right around the time my own quarantine was ending, the cases in Texas started really rising, especially in our county.  At the end of April, our County Judge mandated masking to try and stop the spread.  It was struck down by our governor.  Any hope I'd had of being able to be out more in the general public went away.  Along with striking down the mask mandate, the governor started opening up the state, stating that he would reverse it if cases started going up too much.  The cases continued to rise, and in an opposite move, he continued to open the state more.  So naturally, our family had to become even more isolated.

It was around this point that our church had to make the decision to eliminate Chris's position due to COVID related financial deficits.  His last Sunday is nine days away.  We don't have a "what's next" for him.  God has yet to reveal that.

Schools in Texas are being told to re-open in person or risk losing funding.  There has been a lot of back and forth on what that means and whether or not it's a good idea.  There is still a basic debate amongst many in my community as to whether or not masking or social distancing is even necessary or helpful, or if COVID-19 is even real or a threat.  We've had friends suffering from it.  We know it's real.  And we're choosing to trust the medical community at large when they say that social distancing, hand washing, and masking when in public is the way to combat this virus.

I've been told that as the only music teacher in my school (the school I love, that has helped me through two floods, brain surgery, stroke-like migraines), I must teach in person (every music teacher in the district must). Knowing I have medical issues, I was told to talk with my doctor to get accommodations to give to Human Resources to try and make it safer.  I felt hopeless at first because Texas (on the day I was told) had just hit 10,000 cases per day.  Teaching music (which includes singing) to 20-24 unmasked kids in a 20x25 classroom for 50-55 minutes per class, six classes per day seemed the opposite of safe, and I didn't see how it would work.  But I had the pressure of knowing I would be the only breadwinner at that point, so I said I would do it.

I brainstormed with my school nurse to try and figure out if we could make the situation work.  We came up with all sorts of things like me having a face shield and a mask, having the kids masked, trying to utilize a bigger room like the cafeteria, disinfecting all the instruments and equipment in between classes, etc.  And I made an appointment with my doctor to discuss the situation.

My doctor did not listen to my list of ideas for long.  "No.  I just finished treating you for an extended respiratory virus. I'm not going to risk you finding out if you're going to be an asymptomatic COVID patient or and ICU COVID patient.  Your accommodations are you can go back if there are under 15 kids and they are spaced 12 feet apart at all times (singing expels the air twice as far as talking) or you teach online."  And that was it.  He faxed those accommodations in to Human Resources.  I got word that they received them and that they would let me know what the next steps were.  And that's it.  I let my administrators know about the accommodations as well.  Now we wait.

Quarantine, as you all know, is very hard.  It's hard mentally.  I've been in mental crisis multiple times through this.  The worst time came when I kept hearing fellow Texans discussing "herd immunity" and that we just needed to let this virus "thin the herd."  As an immunocompromised person, I felt like they were talking about me.  Let the weak, the old, the sick get this thing, and let the rest of us live however we want.  And that's kind of how it's been.  Our numbers continue to go up, and people continue to complain about masking.  They continue to refuse to social distance.  They continue to fight doing all the things other countries have done to actually flatten the curve...and they tell me not to "live in fear." I won't tell you how dark things got, but it got about as dark as it can get.

Teachers are telling me the same thing.  Stop complaining about having to go back in person!  As if the rest of the world is not looking at us in horror as we have grown used to the shocking numbers of positive cases.  Many countries are still not opening up their schools whose cases are in the single or double digits.  And we're in the thousands...tens of thousands...running out of beds in the ICU and in hospitals (and I know people will fight me on these facts).  We're talking about opening up hundreds of buildings with thousands of kids and adults with or without masks and certainly without social distancing for hours at a time.  Even the school boards making these decisions aren't willing to meet in a room together for the two hours the meeting last.

I know the science behind the importance of education.  It's why I'm a teacher.  I also know the science of why music education is important.  It's why I became a music educator.  Music education just happens to be one of the riskiest scenarios for spreading this virus if done in person.  How are we talking about this happening in person in the county, at this time, with these numbers?  All of our efforts should be put into getting this virus under control.  Then we can talk about how and when to educate.  Studies have shown it wouldn't take that long in the grand scheme of things, but it would take EVERYONE doing what has been shown to work.

"Don't live in fear."  I think perhaps the people saying this are mixing up fear with love.  I choose to mask and not attend church in person because I don't want to infect my 83 year old best friend.  Is that living in fear?  I don't want to attend her funeral knowing that my desire for "freedom" caused an early death for her.

I know and love the families in my neighborhood.  Many of them are choosing to social distance still.  And many of them are not.  Some of them have COVID and know it.  And some of those families still have family members not social distancing.  There are zero measures being taken by the school to check to see if students are staff are COVID free before starting us all together.  And yet athletes in the bubble in Orlando are being tested constantly.  How much more important are the lives of our children and the teachers who love them?

I've lived the last 19 years of teaching knowing that I might have to take a bullet for my kids if a crazed shooter enters the building.  And I've taught, willing to do it, knowing that I cannot control the whim of a madman (or woman), but that I love my kids enough to protect them.  And that's where I coming from with this.  I love them enough to want to protect them from this horrific virus.  If you're still viewing it as a flu or cold, look it up.  You can't get nebulizers in many places anymore because they're running out.  You don't want your child to get this, and neither do I.  And I don't want you to get this.

My son Jeffrey asks almost every day when he will "get to break free." At first I told him it was when we got a vaccine for this thing.  Now I tell him it's when everyone decides to follow the rules.  And I don't know what it will take for someone who has the authority to first of all make the rules that will save lives, and then for everyone to get that the rules are in place, not to keep them from freedom, but to bring about real, true normalcy for ALL of us sooner rather than later.

Our family lives in a house that has flooded twice (and will flood again with a big enough storm), my husband has lost his job, my job is on the line, and we're quarantined to our house. We're on the brink of losing all earthly possessions, and have lost faith in almost every institution.  But we have not lost faith in the One who taught us how to love and live.  I know some of you will take this as an attack on you...please know that it's more of a plea, a cry, me begging for help.  And not just for me and my family, but for all of those who find their world closing in on them as they find themselves surrounded by indifference and a religion of self versus the greater good.

"Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me."

-Matthew 25:40

On Having a Dad who Died at 47

I have seven specialists.  One General Practicioner.  I'm on a variety of medications.  I have been diagnosed with Meniere's Disease, Hyperthyroidism, Goiter, Hypothyroidism, IBS-D, Chronic Depression, Generalized Anxiety Disorder, Insomnia, Herniated disc, pre-cancerous polyps, Concussion, Post-Concussion Syndrome, Arnold Chiari Malformation, Type 1, and Migraine with Brainstem Aura.

I'm 40 years old. 

My dad died when he was 47.  He was diagnosed with about half of the things I've been diagnosed with, and probably had many of the others that he was not diagnosed with.  The last thing he was diagnosed with was stage 4 Adenoma Carcinoma (cancer), Primary Site unknown.

By the time he was officially diagnosed, it was too late.  He had been seeing doctors for a variety of ailments, but they never seemed to know what was wrong with him.  He became disillusioned, and stopped putting any faith in doctors.  The night mom called me to tell me dad was not well and needed to see a doctor, I had to have a long talk with him.  I urged him to go the Emergency Room.  "They never know what's wrong with me," he said, but went anyway.  I understand where he was coming from now.

Losing a father at such a young age (an age I am quickly approaching) changes how you view life.  My dad's father had died at the age of 57.  Dad was always concerned about not living past 57.  I have a concern about living past 47.  I can't explain it.  It's just there.

Living with chronic, and often unexplained illness takes a toll.  You feel the symptoms, but they can't be explained.  You go to doctors, but they explain things away, and simply have you try different things that may help temporarily, but then do not help with the other myriad of symptoms you also have.  And specialists rarely try to put all of your symptoms together.  "That's not in my field."

Dad, once he was diagnosed, was told he could go back to work until treatment started.  He never went back to work.  Mom called us and let us know Dad was failing fast.  When I saw him, I was devastated by how bad he looked.  We took him into the ER that night.  He told us that we must simply take each moment as it was given us.

I returned to the ER that night when the morphine drove my dad into hallucinations and he tried to escape the hospital.  I had to convince him that he needed the oxygen he was trying to avoid, and helped him put the tube back in. 

I now live with chronic illness, as my dad did.  Am I more sensitive to findings on reports, symptoms as they occur, and doctors who don't seem to listen?  Yes. 

But let me make something clear...I don't fear death.  I do want to make sure that the time I am given on this earth is spent with me in the best possible health I can have because I want to be available to my family, my friends, my church, the unexpected strangers.  But I do not fear death. 

None of us are guaranteed another day on this world.  We are simply given the opportunity to make the most of each day.

Living with chronic illness can make this tough.  I'm a performance based, task oriented person by nature.  I often forget my value as a daughter of God, and place my value in what I am able to do.  On good days, when I don't have to stay in bed for hours, or take extra medication because of my migraines, I feel better about myself.  I struggle with the days where I am bed bound, struggling to fight the urge to seek the guillotine because the pain in my neck and head are so bad due to my migraines and Chiari.

But I know the pain of losing a parent at a young age.  I don't wish that for my children.  That's why I continue to fight, to seek answers, to look for solutions, even when I'm told there are none. 

"God grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference."

An Idle Mind is the Devil's Workshop

I believe that the saying of my subject started as "Idle hands are tools in the devil's workshop" or something of that nature, but my own weakness tends to stray for more into the mind, rather than the hands, especially these days.

Time.

I have much of it to sit and think, or try to think through the onslaught of symptoms my brain is trying to hurdle.  I did hurdling in high school.  I'm as good at hurdling my symptoms and thoughts as I was at hurdling in high school, which is to say that I'm terrible.

I am an over-thinker.  I'd gotten better in my adult years, but this current health situation I find myself in has me once again stewing (hence my blog site's name) over situations, symptoms, and possible diagnoses constantly.

I went back to the neurologist that diagnosed me on Thursday.  It was one of the worst medical experiences I've ever had, at least from an emotional and mental standpoint.  He, who was so quick to diagnose me the first time (and in fact had spent an hour and a half convincing my husband and myself that this was indeed the diagnosis during our first visit), changed his mind within 30 seconds of seeing me during an actual episode.  He is referring me to an epilepsy unit (despite saying multiple time that he does not think I have epilepsy), and is washing his hands of me as a patient. He lectured my husband and I as to why my diagnosis was incorrect, and how it definitely didn't seem to be neurological (even though I have a skull malformation, a hole in my brain stem, and am exhibiting classic neurological symptoms).

Living with an undiagnosed skull malformation for 39 years, I've had my fair share of being handed around to various specialists trying to treat individual symptoms or syndromes.  I've been diagnosed with Meniere's disease, hypo-thyroidism, IBS-D, food intolerances, chronic depressive disorder, anxiety disorders, PTSD, herniated discs, and most recently, Arnold Chiari Malformation, Type 1 (which causes or masks all previously listed diagnoses) and Migraine with Brainstem Aura.

I'm a black and white person when it comes to facts, and desperately desire black and white answers for my myriad of medical maladies.  I thought I'd finally found it with my Chiari malformation.

But then, these unexplained episodes of neck pain, headache, paralysis, aphasia, blurred or double vision, muscle weakness, pins and needles, pressure in my ears and head, accompanied by panic attacks have once again left me in medical no woman's land.

My easily spooked neurologist (not to be confused with my diligent, patient, never-defeated neurosurgeon), thinks the symptoms or episodes are being caused by underlying stressors.

Ya think?

Stress exacerbates pretty much every disorder, disease, symptom known to man.

And we already know I have plenty of fairy large issues to be stressed about.

So this post is for all of you who find yourself written off by doctors, family members, bosses, friends, and anyone else who knows the true pain of what he or she is going through, but is dismissed by a doctor's inability to understand the nature of the illness, or the decision not to further pursue anything because it is out of their field.  I see you, I hear you, and I empathize with you.

One thing that has kept me sane, particularly in those moments when movement or speech have left me, is to pray.  Prayer is beautiful because (thankfully) it does not need to be done out loud.

My idle mind would rather focus on bitterness, anger, resentment, and, of course, worry.  And I could easily find (and am many times spoon fed) justification for why all of these are perfectly appropriate for me to be feeling (which they are).

They're just not places I can stay.

Our Father in heaven,	(breathe)
hallowed be your name.	(breathe)
Your kingdom come.	(breathe)
Your will be done, on earth as it is in heaven.	(breathe)
Give us this day our daily bread. [Or our bread for tomorrow]	(breathe)
And forgive us our debts, as we also have forgiven our debtors.	(breathe)
And do not bring us to the time of trial, [Or us into temptation] but rescue us from the evil one. [Or from evil]	(BIG BREATH)
[Other ancient authorities add, in some form, For the kingdom and the power and the glory are yours forever. Amen.]

This is the prayer than runs through my head when it could so easily become idle, and is from the book of Matthew.

I do not pretend I go to this naturally, or even consistently.  But I do know that I receive peace much more quickly when my mind goes to this prayer, or to other Scripture, or to just listening for God's voice in the midst of what are very scary circumstances to be under.


Traveler's Prayer:

May it be Your will, Lord, our God
and the God of our ancestors,
that You lead us toward peace,
guide our footsteps toward peace,
and make us reach our desired destination
for life, gladness, and peace.

May You rescue us from the hand of
every foe and ambush,
from robbers and wild beasts on the trip,
and from all manner of punishments
that assemble to come to earth.
May You send blessing in our handiwork, and grant us grace, kindness, and mercy in Your eyes and in the eyes of all who see us.
May You hear the sound of our humble request because You are God Who hears prayer requests.
Blessed are You, Lord, Who hears prayer.
Yes, and Amen.

Never Normal

Six months after my brain surgery, I experienced an episode that those around me were convinced was a stroke. I was rushed by ambulance to the hospital and admitted.  Test after test was performed.  Doctors were baffled.  My neurosurgeon felt it was simply my brain getting used to the amount of space it now had to spread nerve endings out.

After that, our house flooded during a flash flood.  We lost a car the week before to another flash flood.  It was very hard. We were blessed with so much help from our community

Our house was rebuilt during the summer.  Despite this, it was a good summer.  Lots of visits with family, I felt my health getting better, and was in a very good place.  I had one episode similar to the one in April, but it didn't last as long, and we thought we knew what was causing it. Our house was finished in August, just in time for Jeffrey to hold a birthday party here.

Less than a month later, our house flooded again during Tropical Storm Imelda.  And it was worse.  Much worse.  We lost all of our vehicles and watched our beautifully remodeled downstairs get washed away in the silt filled flood waters that came rushing down our street from the same development that had caused the flooding in May.

After that, it was more difficult to feel optimistic.  Our church experienced a pastoral change, and though my husband felt called to be a lead pastor, our board decided not to consider him, which is perfectly within their right to do.  So our house, his job, and our future was once again filled with uncertainty and chaos.

It's three months later, our house is once again almost completely finished.  We've moved back into the downstairs, have our decorations up, and lights on our house.  But no pictures, paintings, knick knacks are on our walls.  What's the point?  We put stuff on the walls in September a week before it flooded and had to take them down again.

I'm on medical leave.  After we flooded again, I started having episodes more frequently, and had two in front of students.  My school district placed me on medical leave until a neurologist could explain the episodes and provide accommodations that I would need in order to be able to keep teaching. I missed the entire holiday season of programs, games and fun that this time of year brings, and hurt from it.

We have a diagnosis now.  Migraine with Brain Stem Aura (on top of my Chiari Malformation diagnosis that will always have medical implications).  I have a hole in my brain stem.  It appeared in MRI's after surgery, and had grown when they looked at it again during my first episode.  Trauma to my brain stem appears to be what's causing them.  Migraine with Brain Stem Aura mimics a stroke (and actually increases my chance for stroke).  I lose the ability to speak and move, and get a horrible pain on the left side of my brain.  It can last anywhere from 30 minutes to hours.  I have had multiple episodes per day, and now, after receiving the diagnosis and getting medication to help prevent them, am down to one to two a week.

My main trigger for Migraine with Brain Stem Aura is stress and anxiety.

What does one do when stress is ever present?  My house WILL flood again unless the developer (Perry Homes) fixes the 300 acres of clear cut and puts in appropriate drainage.  My husband's calling to be a lead pastor is still very firm, but will not happen in our current church, which means eventually moving. Again. And who will buy a house that we know will flood?  My diagnosis is chronic.  It will always be there.  And like most chronic illnesses, treatment varies from person to person.  Will I be able to work again?  I love what I do.  How will this work?

Before finding out that he would not be considered as the lead pastor, before my diagnosis, before being placed on medical leave, my husband had been working on a series that he was going to preach on.  And oddly enough, it was from the book of Habakkuk.  The first sermon was based on chapter one:

How long, Lord, must I call for help,
    but you do not listen?
Or cry out to you, “Violence!”
    but you do not save?
3 Why do you make me look at injustice?
    Why do you tolerate wrongdoing?
Destruction and violence are before me;
    there is strife, and conflict abounds.
4 Therefore the law is paralyzed,
    and justice never prevails.
The wicked hem in the righteous,
    so that justice is perverted.

He didn't know at the time why he was being called to preach it.  But as he preached, life unfolded.  He would not be considered to be a lead pastor at the church we loved so much.  My health declined and pulled me away from my work.  Our house continued to be in danger of flooding, despite promises from politicians and Perry Homes themselves. Then he preached the next week on chapter two:

I will stand at my watch
    and station myself on the ramparts;
I will look to see what he will say to me,
    and what answer I am to give to this complaint.[a]

And the week after, we were comforted with this (although it was our Spanish speaking pastor who preached on this) from chapter three:

Lord, I have heard of your fame;
    I stand in awe of your deeds, Lord.
Repeat them in our day,
    in our time make them known;
    in wrath remember mercy.


We are given no guarantees in this life.  Guarantees of stability, of health, of wealth, of harmony are never promised.

God is our guarantee.  He will never leave us, or forsake us.  He is our mouthpiece when we are struck dumb.  He is our strength when we are weak.  He carries us when we cannot walk. He is our bulwark when everything else is ripped away.  He is who our family lives for, lives by, and is called by.

This season has been hard.  So, incredibly, hard.  But God has been faithful.  People, good, decent people, have been our help in time of need, encouragement in times of discouragement.  My family, church family, school family, community, and  especially my husband, have been my mouthpiece when I have been struck dumb, carried me when I could not walk, and been my bulwark in the midst of others forsaking him and us.  They have been the hands and feet of Christ

My pain is still real, my anxiety always ready to burst out, my body is out of my control, and my family is still sitting in impending chaos and change.  Please pray for us in this season, as so many of you have.  Please pray for wisdom, guidance, direction, and above all, peace.

And we will pray that for you as well.

Blessings on the New Year, and wishing you a very Merry Christmas.

Who Am I?

Having brain surgery to correct a problem you didn't know you had for 39 years brings several things:

1) It brings relief.  There's an answer for the wide range of issues I've had for decades.  And many of them have resolved as a result of the surgery.  I am very, very grateful to Memorial Hermann, the Woodlands, and to my neurosurgeon Dr. Herrera, who refused to give up on me.  I felt that most people in my life simply thought I was crazy.  In fact, I know some of them did.  That led to the next feeling...

2) It brings pain.  Not just the pain of the recovery, but the pain of wishing the problem had been found years ago when there were so many MRI's, CT scans, X-Rays that would have shown this, had doctors looked closer.  I don't blame the doctors who missed this.  But I do wish they had found it all the same.  And I wish people close had believed me when I tried to explain what I was experiencing for years.  It hurts that they didn't.

3) It brings confusion.  I have lost memories.  Many memories.  I still have a difficult time remembering things.  This appears to be one of the things I will not be getting back.  It's probably a mixture of the scarring my brain being in the wrong spot for so long, but also just my natural aging.

I'm also confused about who I am.  I have been sick, mentally and physically for so long.  My family became my caretakers, including my children.  Now that I'm "back", neither they or I know exactly who I am.  Who am I as a parent?  Who am I as a wife?  Who am I as a pastor's wife?  Who am I as a teacher?  Who am I?

I try to be open and honest.  I've started psychotherapy.  Turns out I've had quite a lot of trauma in my life, brain surgery being the last one.  This, put with my Chiari malformation that was unrecognized for so long, has created some anxiety that I can't quite put my finger on.

My moves as a child were traumatic.  Losing both my grandfather and father at early ages were traumatic.  I was in an emotionally abusive relationship with an extremely narcissistic man for almost two years (sorry to those of you who knew him and knew me during that time...but it's true).  Chris and I went through an extreme marital crisis shortly after my father's death that tore my world apart.  I had three children in three years, which left my body and mental state in a very fragile state shortly after that marital crisis.  Two of my children have autism, which I have grown to appreciate, but which was very difficult to come to terms with during those first years after diagnosis.  My pregnancy with Luke was filled with medical issues, all the way through to his delivery where both he and I could have died due to a placental abruption during delivery.

We moved to Texas, which was wonderful, but difficult, and have moved multiple times in Texas while being here.  Being married to a pastor, I never know how long I will be somewhere, and as a person who swore as an emotional 12 year old that I would NEVER make my children move, it's tough.  I so badly want to put down roots, but just can't.  Friend making, which has always been difficult for me, is made more difficult knowing that I may have to say goodbye to them if we are called elsewhere.  I don't like change.

I've been in educational situations that were extremely difficult, and in some cases traumatic.  And I just had an incredibly traumatic surgery that left in me in a great deal of pain for weeks.  I still panic when certain symptoms show back up suddenly and worry that I will have to redo the surgery.

I say this, knowing that there are many (including many of my students) who have suffered more than I.  But pain and trauma are different for each person, and just as important.

So I'm confused.  All this stuff is being brought up as I try to find my new place in the little world I live in in my home, my church, my school, and within my own, newly remodeled brain.

Who the heck am I?  What characteristics will stay, and what will go?  What does my poor family do as they try to navigate the "new" me?  How do I respond to them?  How do I communicate to my kids that sick mommy is gone and healthy mommy is back, and that they need to respond to me and my attempts to raise them the same as they respond to healthy, steadfast daddy?

The only thing that keeps me grounded is my faith.  I KNOW that I am a child of God.  I KNOW that I am not perfect, but that He is.  I KNOW that His plans for me are always better than those I come up with myself.

So while I am confused, anxious, forgetful, a pain, I am still HIS.  I may spend the rest of my life trying to figure out what portions of my personality are really mine, or are simply a response to the circumstances in my life. And I'm willing and doing the work to sort through my traumas, my quirks, my changes, and my anxiety.

But I need prayer.  Lots of it.  I need help.  Lots of it.

Thank you for listening to my ramblings.  And thank you for your support, prayers, and love.

2018 Christmas/New Year's Letter

(My mom used to send out a Christmas "newsletter" detailing all of us and our list of accomplishments.  I remember one year she got back a snarky article from an anonymous source basically admonishing her for making our life out to be so great and that no one wanted to hear about it.  Not sure if that's how this will come across.  If it does, Merry Christmas and a Happy New Year.  I'm going to write it in the old school way, although my details are probably a little more TMI than any old school letter would have allowed.)

December 30, 2018

Merry Christmas from the Tiner Family!  We hope this letter finds you well and at peace.  If you are not, don't worry, we're living it some difficult times, but luckily have a wonderful God we can always go to in order to find strength to meet those difficult times.

This year has been a doozy, to say the least.  Again.  Every year in the Tiner house seems to be a doozy.  We didn't move this year, which is great, since we moved every year from 2012-2016.  Luke didn't live in the same house for more than a year until he was five years old.  We love our house and our pool, although the plumbing is pretty awful, as is the electrical.  I often wish my dad were alive (for a lot of reasons), but the shoddy electrical would have been taken care of a long time ago if he were.  Chris just let me know that our garbage disposal went out.  But with that, I am grateful to be able to own a home, as I know many in my circle of friends and family are unable to because of the housing markets they live in, or because of the employment circumstances they find themselves in.

Mom always started with Dad, so that's where I'll start.  Chris began his fourth year pastoring at Lake Houston Church of the Nazarene in Humble/Atascocita.  He became an elder in the Church of the Nazarene this April, something of which I am so incredibly proud of, particularly as there was a time in our marriage/life when I didn't think it would be possible.  His pastoral title at church has changed a little.  He is currently the Pastor of Youth and Worship.  He also preaches a lot (for a youth/worship pastor), and I always feel blessed when he does.

If you have given up on God's ability to change someone, remember Chris.  He is a new creation, an obedient son to his Heavenly Father, and a wonderful pastor.  He has very high standards for himself, but knows Who to lean on in order to try and meet those standards.  He is an amazing father, a wonderful husband, and I feel very lucky to be married to him.  He's gone through a physical transformation as well, and has lost about 35 pounds, runs daily, and is thoroughly attractive.   :)

Kadee Joy (who really just goes by Kadee, but I'm her mom, so I'm not changing) started high school.  HIGH SCHOOL.  She started off with a bang, too, which took the form of marching band camp.  It's Texas marching band, and it is INTENSE.  She also started off by catching the eye of a super nice and goofy sophomore, and now has a boyfriend.  We're all trying to adjust.  :)  High school has been challenging, but we're grateful that we can be open and honest with her (and her with us) about those challenges.

Andrew is a 7th grader now, and loves school.  He loves his dog Carlos 1000 times more.  Any conversation will usually segue into his love for Carlos, his worries for Carlos, his plans for Carlos, etc.  He is still super compassionate, loves his family, is very obedient, hates for others to get into trouble, and spends a good part of his time drawing comic strips.  These comic strips are strewn all over the house, and he adds multiple pages to them each day.  He's getting very tall, wears the same size shoe as me, and is beginning to make plans for his future, which include a wife, eight children, and protecting Carlos from crocodiles.

Jeffrey entered middle school as a 6th grader this year (probably the shortest one at his school) and spends much of his time correcting the bad language of those around him.  He switched to Dance halfway through the first quarter and gave his first dance recital at the beginning of this month.  He has loved dance from a young age, and made us so proud as he danced WITH his peers.  He was one of two boys in the whole recital, and he could not have cared less.  He and Andrew are in the same class and are extremely happy there.

Luke is a first grader, and around November started reading EVERYTHING.  He is a very typical boy (both the good and the bad), has a lot of friends, and bosses around his brothers when at home.  This also helps them to learn how to defend themselves (thanks, Luke).  He loves video games, playing outside, playing "battles" at recess, and dreams of joining the military.  He keeps me young and ages me at the same time.

Then there's me. My last blog left off on my mental health road, which was rocky (to say the least).  I ended up undergoing 30 treatments of transcranial magnetic stimulation (TMS) which is a more intensive treatment of depression, and did wonders. I was able to taper down to a very small dose of both my anti-depressant and anti-anxiety medications.

The last day of school, I found out that the music teacher at my neighborhood school was retiring, so I applied for the job, and was thrilled to get it.  I'd never had the opportunity to teach Luke, and now I would get to, making me able to teach all of my children at some point.  I started off the school year organized and excited.

Just a week or two in, I started to have odd symptoms.  My hands were shaking all the time, I was dropping things, and I began experiencing numbness and tingling all over my body, but particularly in my extremities.  I noticed it would get worse the more I worked.   I went and saw my endocrinologist, thinking it must be thyroid related, but every level came back normal.  I'd gotten a concussion during the summer while counseling teen camp, so made an appointment with my neurologist to see if that had something to do with it.  She scheduled an MRI.  I didn't make it that far.

On September 28, I woke up completely paralyzed.  Chris had to carry me down to the van after several failed attempts on my part to walk/move.  He asked me where I wanted to go, and I said the Woodlands, since that's where my neurologist was.  After two days of blood work, tests, MRI's, CT Scans, X-Rays, a neurosurgeon came in, did a few reaction tests on me, and then let Chris and I know that he actually had answers for us.  He'd found a skull malformation called Arnold Chiari malformation, Type 1, that had caused my cerebellum to extend down into my spinal column, almost completely blocking it.  I would have to have brain surgery in the next two weeks.

The weeks leading up to brain surgery were very strange.  I couldn't walk without support, couldn't drive, couldn't work, couldn't talk well.  And all I could do was wait, while my insurance company decided whether or not to approve the surgery.  I had the surgery the week after they approved it.

Recovery from this surgery is horrific.  HORRIFIC.  The worst pain of my life.  I was in the ICU for three days, as they attempted to manage my pain, my nausea, and get me to the point where I could walk independently.  Once I was able to do that I went to a regular hospital room, where I continued to try and heal enough to get to go home.  I went home the fourth day from surgery.  Chris was with me the first two nights, and my twin sister (who'd graciously flown down from Canada to help) stayed with me the third night.  They had to endure my anti-nausea temperature regimen of keeping the room at a balmy 60 degrees.

The next three weeks were still awful.  Not pain-wise, but nausea-wise.  I've experienced a few times where eating is a problem (morning sickness for four children), but this was really, really bad.  My mom had switched with my sister, and was constantly trying to get me to eat/drink anything.  I don't know what I would have done without my husband, sister, mom, and family (including church and school families).  It was a rough, rough, road.

And then I turned a corner.  I know that I had countless people praying for me throughout.  Thank you.  Once I turned that corner, I lost a myriad of symptoms I'd been having for years.  I became myself.  Depression, suicidal ideation----totally gone.  It also restarted my pain/sleep tolerance so that I could mentally work through getting things done without giving up because of lack of sleep or too much pain.  I still have work to do in that area, so you can pray for me on that.  Brain fog is gone, and my memory is better.  At least, it's better now.  Unfortunately, I have lost many, many memories, especially from the last few years.  They're just gone.  Here's to making new ones to replace them.

I went back to work, and with the help of my team, school, husband, and students, put on my first program for new school and it was great.  As soon as school ended, my body crashed.  I think my recovery is still continuing, although it's hard to admit it sometimes. Plus I miss my extended family.  The holidays are still very hard.  I was grateful to be with my little family, and we did have a wonderful day together.  We did a Secret Santa exchange for the first time, which helped the kids harness the idea that many it is much better to give than to receive.

So here we are, at the end of 2018.  I am grateful for where we are, glad to be through what we've been through, and hopeful that, regardless of what comes our way in 2019, we will be able to meet it with the same encouragement, peace, strength, and wisdom that only comes from the One who has been with us all the way.

"The Lord bless you and keep you;
The Lord make his face to shine upon you, and be gracious unto you.
May his countenance be upon you and give you peace."

-Numbers 6:24-26

Love,

Chris, Stephanie, Kadee Joy, Andrew, Jeffrey, Luke, and Carlos Correa (the dog) Tiner