A Tribute to My Grandmother

Obviously being trafficked, having strokes, and loosing everything I owned to toxic mold was not easy. However, those things are a given. Anyone would struggle with those, and understandably so! These things are hard and complicated on many levels and for many reasons, and these things caused so many other things to happen. Aside from these massive things though, there have been other times in my life that I would consider hard. The hardest moment that comes to mind was loosing my grandmother.

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My grandmother was the only person who I could depend on as a kid. Multiple times she tried going to the authorities to get them to take us from the abuse. Multiple times she went to the school to voice her concerns. Multiple times, she tried to save me from the suffering and abuse to no avail. She was my favorite person, the woman I looked up to. The woman I wanted to be, she was my idol. Little did I know, her life wasn’t great. I remember being a little girl and we would go grocery shopping and she’d let me push the cart. We’d play dress up, well she would watch me play dress up in her clothes and shoes. She would do my favorite puzzle with me over and over again. She was always awake before everyone, the smell of coffee and bacon flowing through the house waking me up with a good morning kiss. She would always let me mix the hot cakes (pancakes) and stand on the stool next to her as she cooked the bacon. Most of my most vivid memories are the times I spent with my grandmother. She was so funny and man could she sing! I remember her 80’s blond hair curled on the top of her head and then picked with the comb and sprayed with 7 cans of hair spray. It was a thing! I remember our schemes to scare my grandfather (which looking back she probably got in trouble for).

Then one ghastly night it was all gone. Her death wasn’t sudden or unexpected but it was far too soon. She had been sick for many months with Lou Gehrig’s disease or ALS. I watched her body deteriorate, all while her brain knew everything that was happening. I watched her anguish as she struggled to accept her new normal. She was not a woman who accepted, let alone asked, for help. I would walk into a room and see her crying and quickly wipe her tears away and enjoy those precious moments with me. I was 12 when she told the family she was sick and I was 15 when she passed away. I was with her on her last night. I made her laugh and then my grandfather yelled at her for being to loud and she started having a panic attack. Her Hospise nurse knew this was a sign she needed her oxygen, however this time it didn’t work. I called 911. This was the last time she’d have to endure my grandfathers abuse. This was our last moment of togetherness. This was the last time my grandmother would have to struggle.

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My grandmother has been gone for almost 12 years and there is not a day that goes by that I don’t wish I could call her and tell her about my day. There is not a day I don’t wish she could meet my wife. I know she’d be proud. There’s not a single day that I don’t miss her. There is also not one day that I don’t know she’s watching over me. She loved me, when no one else did. She wanted me, when no one else did.

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Dreaming…

6 years old
A white tool dress
Pink silk on top
Pink tights to match
White buckle shoes
Shiny
They’d squeak
If they accidentally touched each other
Easter sunrise service
A memory
Behind that innocent persona
An abused little girl
With a mask to hid it all
She dreams
What the future will hold
If escape is possible
If she will get the chance
Chance to fulfill her dreams
Her dreams
Having her own family
Doing a better job
Loving
Healthy
Dreaming

Wide awake
Brain is racing
Unable to be pregnant
I thought I was okay
But I am not
I’ve always wanted that experience
From a young age
To carry a child
To birth a child
To do a better job
Give my child the life
The life I never had
I’ve always wanted to adopt
And foster
And I will love them
Just the same
Yet I yearn for that…
That experience
That level of vulnerability
Vulnerability to nature
To the universe
I see life as a series of dances
Some fast
Some slow
Some intimate
Some against the music
Some in tune with the rhythm
Pregnancy is just that
A dance
With its own heartbeat
A weaving of strings
Love no different
No different from adoption
Just an experience
Why was this a dream
Why was this so important
Society’s expectation?

I cry
I grieve
For the loss that will soon be
For the unattainability
For the official end
End of the option to conceive
End of this desire
A new door opens wide
To love
To care
To help
To give children what they deserve
To love children who don’t have love
To care for children who don’t have a caretaker
To help children who need it
I will be the best mother I can be
This dream doesn’t end
It’s just shifted
Shifted away from a selfish desire
Dreaming

Migraine Management

Migraines are different for everyone but the following are some suggestions that have been given to me by a headache program I was in. I am not a doctor, please consult your doctor before stopping or starting any and all medications including supplements.

Based on the diet restrictions you may already have, such as myself I can’t have dairy and I’m suppose to avoid vitamin K. I don’t follow this religiously as some of these things don’t bother me and others do. These are just the ones that are studied and known as triggers or things to avoid.

Most common dietary triggers:
Caffeine: coffee, tea, soda; did you know that even decaf has traces of caffeine?
Chocolate: most cocoa is known to have caffeine.
Monosodium Glutamate: THIS IS A VERY COMMON TRIGGER! Also known as MSG, it is in a lot of processed things usually about halfway through the ingredients list. It is also in almost all Asian food particularly Chinese food.
Processed meats and fish: Mostly nitrites/nitrates are the things to avoid here.
Cheese and other Dairy: Typically the more aged the item the higher likelihood it could trigger a migraine.
Nuts: Avoid nuts, seeds are okay.
Alcohol and Vinegar: these things can cause inflammation. Vodka is the most tolerable as is clear vinegar over say apple cider vinegar.
Certain Fruits and Juices: Citrus and dried fruits, as well as raspberries, red plums, papayas, passion fruit, figs, and avocados.
Certain Vegetables: sauerkraut and peas and beans should be avoided as they can cause inflammation.
Fresh Yeast-Risen Baked Goods: Breads and yeast based goods older than 48 hours are better tolerable.
Aspartame: ‘fake sugar’ is not well tolerated.
Others: Soy and cultured foods can be triggers.

Foods more tolerable:
Meats/Fish/Poultry/Eggs – Freshly purchased and prepared meats, fish, and poultry. Eggs. Tuna.
Dairy – Milk: Whole, 2%, or skim. Cheeses: American, cottage, farmer, ricotta, cream cheese, velveeta, low-fat processed
Breads/Cereals/Pastas – Commercially prepared yeast. Product leavened w/ baking powder: biscuits, pancakes, coffee cakes etc. Cooked and dry cereal. All pasta.
Vegetables – Asparagus, string beans, beets, carrots, spinach, pumpkin, tomatoes, squash, zucchini, broccoli, potatoes, onions (cooked), Chinese pea pods, navy beans, soy beans,
Fruits – Apples, applesauce, cherries, apricots, peaches, and others not on dietary trigger list.
Soups – With allowed ingredients with homemade broths.
Beverages – Decaffeinated coffee, fruit juices, club soda, caffeine-free carbonated beverages.
Desserts/Sweets – Allowed ingredients including sugar, jelly, jam, honey, hard candies, cakes, cookies.
Fats/Oils/Misc – Cooking oils. White vinegar. Commercial salad dressing w/ allowed ingredients. All spices.

It is recommended to keep track of your headaches/migraines including: Date, time, intensity, preceding symptoms, triggers, medication, relief and anything else you see as important.

Preventative Supplements**

Magnesium, Riboflavin (Vitamin B2), CoEnzyme Q10 (CoQ10), and Vitamin D3.

Personally I take:

Magnesium Glycinate 500-1000mg nightly or Magnesium L-threonate 1500-2000mg nightly. Keep in mind this can cause loose stools.
Riboflavin (Vitamin B2) 400mg daily. Does cause yellow urine.
Vitamin D3 50,000IU weekly.

Abortive Options – Taken at the VERY first sign of a headache/migraine. Discuss with your doctor what medications may work for you.**
Personally I take:

Tylenol Arthritis at onset. I have also been prescribed a medication to use in the event that the Tylenol Arthritis doesn’t work.

All of these things can be purchased at several places such as Amazon, Sams, Costco, Swanson Vitamins etc.

**CONSULT YOUR DOCTOR BEFORE STARTING OR STOPPING ANY AND ALL MEDICATIONS INCLUDING SUPPLEMENTS.

Resources:

http://www.headaches.org/

https://migraine.com/

 

Again, I am not a doctor, please consult your doctor before stopping or starting any and all medications including supplements.

 

~Sarah

My Take on The ‘Opioid Crisis”

Not only was my mother addicted to meth, she also did anything she could to get her hands on opioids. Her favorite was hydrocodone. She would complain of migraines for days, but only when she was out of her prescription for hydrocodones. I have no doubt that she had ‘migraine’ like headaches as these are common in the withdrawal from opioids and other medications. There is a specific type of headache/migraine that is called a ‘medication headache’ is known and talked about amongst the trained eye. My mother had the ‘pink pill’ hydrocodone, at least that’s what her doctors called it. It was the strongest they would prescribe to an out-patient. When she was out of these pills she would go to the hospital and state she had a migraine and then they would go through a list of things they ‘normally’ give and she would say those things didn’t work for her. Finally, they would say something like fentanyl or hydromorphine or hydrocodone and she would agree to ‘try’ that. Even though this was a MONTHLY occurrence if not 2-3 times per month. She never tried any of those other non-opioid drugs, she just didn’t want those cause they didn’t get her high.

My mother always chased the high. Meth. Opioids. Self-harm. Abuse. Erratic and reckless driving. Adrenaline junkie. There were times when she would disappear for days. Sometimes just 2-3 other times a couple weeks at a time. I always assumed she was on some kind of drug binge during these times. She would come back with all kinds of things; candy, popcorn, a new car, new ideas on how were going to live a better life and ‘get away from all these things.’ She talked a good game, but it never happened. We never got away. Sometimes I wonder if the gang kidnapped her during those times and kept her until she no longer looked like she had the shit beat out of her. Everytime she came back she was so high. She abused the system, in so many ways.

It’s because of people like her that there is an ‘opioid crisis.’ It is because of her so obvious drug seeking behaviors that there is a supposed crisis that needs to be put into check. It is because of people like her that those who benefit from these drugs are having a hell of a time getting access to these. It is because of her behaviors AND the doctors giving into these behaviors that we have to now fight to keep the one legal thing that helps some of the time. All of this could be avoided. THERE IS AN ALTERNATIVE.

The legalization of marijuana medically and recreationally has dramatically changed the climate for opioid use! Take the following quote from the Washington Post*:

“…states with medical marijuana laws between 1999 and 2010 saw, on average, about 25 percent fewer opiate overdose deaths than states without such laws.”
“…the typical physician in a medical marijuana state prescribed 1,826 fewer painkiller doses for Medicare patients in a given year.”
“…Journal of Pain found chronic pain patients who reported marijuana use were 64 percent less likely to report opiate use, more likely to report good quality of life, and less likely to report negative side effects from their medication.”

While these three statistics are in regards to medical marijuana, that is a huge step toward the ‘resolution’ of this opioid crisis we keep seeing and talking about. Everyone wants to talk about how it’s an issue and it needs to be changed…well here is what is making that change in so many states! Here is a resolution to this crisis.

~Sarah

 

 

*https://www.washingtonpost.com/news/wonk/wp/2017/02/28/attorney-general-sessions-wants-to-know-the-science-on-marijuana-and-opioids-here-it-is/?utm_term=.03dbc3fecd87

How Not to Healthcare in America

We all know our healthcare system is not great, along with all else in this country at the moment. As a trafficking survivor, informing my doctors of such is something that seems pertinent to a healthcare provider especially given my specific experiences. My primary care doctor took the information and uses it appropriately, to make informed decisions about my care. He occasionally asks how I am doing with self-harm as it is one of the things that is important to my care. And he asks due to real concern and desire to support in the best way possible not for any malicious reason. This is the same doctor that has filled out all of my paperwork for short and long term disability though my job since my strokes. And the same doctor that is temporarily handling my pain due to issues with my pain specialist that I will discuss. My primary care doctor, is by far the best doctor that I have ever been seen by. He has been my doctor for about 2 years and will be until he no longer practices.

There are several things that work against me in terms of healthcare aside from being a trafficking survivor; I am a woman, I am plus-size, I am gay, and I had strokes at 25 years old. The only thing in my favor is that I am white, my whiteness gets me to be listened to even if not necessarily heard. My whiteness gets me to a room in the ER whereas the black woman across from me who’d been there for hours with a VISIBLE ailment was still in the waiting room. Our healthcare system was built by middle aged white men FOR middle aged white men.

Rewinding a bit to being in the hospital with my strokes for most of July 2017. While in the hospital I spent one night in the ICU (intensive care unit), 5 nights in the IMCU (intermediate care unit) and several in the stroke/neuro unit. During my stay I saw several neurologists as they do rotating shifts and they all thought I was being dramatic, if not for the scans I do not think they would have believed me at all. One neurologist in particular, ordered a psych eval because she literally thought I was crazy, this is what she told the psychologist. The psychologist and I had a good talk though, about my history being a trafficking survivor and with self-harm and my mental illnesses. We talked about the fact that my anxiety is a contributing factor in my pain and vice versa, which I stated not the psychologist. I think that is when he realized the neurologist was being judgemental and not professional. This is also the neurologist that withheld all of my medications for almost a full 24 hours including the blood thinner that I was put on because I almost died. This is when I was labeled drug-seeking because I was in pain. As if a tear in ones artery isn’t painful!

As someone with chronic pain, I learned quickly that you almost have to play dumb when it comes to medications otherwise you are seen as drug-seeking. I was diagnosed with fibromyalgia originally in 2011. This was the beginning of my journey with a diagnosis of something that, at the time, I didn’t know was not seen as a real disease. Since then so much has happened resulting in many other diagnosis, a multitude of ER visits, and several specialist visits. I taken about 100 different medications through the last 7 years, most of them not working. Each time I’ve seen a new doctor, it’s been the same introduction, leading with my trauma history, into the laundry list of diagnosis, my current medications and providers, and lastly what I’m seeking from them. This last part is where you have to watch what you say. You can’t go into a doctor and state you need pain medication or even an antibiotic. This request has to be thought about, refined, and stated in a ‘correct’ way. If you get upset, cry, or seem anything but calm, cool, and collected you get labeled as dramatic, drug-seeking, and crazy.

The dreaded pain scale. Anyone who’s ever been inside an ER knows what scale I’m talking about. This 0-10 pain scale is what is standard in our healthcare system, 0 bring no pain, and 10 being the worst pain imaginable. First off, as humans, I don’t think we ever have a 0 level pain, not this day in age at least. Secondly, they define worst pain imaginable as someone sobbing not being able to make out words and curled up in the fetal position. Yet, if you present like this you are told to calm down and use words and if you don’t talk to them they can’t help you etc. Then you are labeled as dramatic, drug-seeking, and crazy as mentioned above. So here we are at this crossroads of a no win situation. When you factor in chronic pain, you have to take in consideration the definition of chronic which is something that is never ending or relentless something that has lasted for more than a few months. When one lives with this pain, they develop a higher pain tolerance the longer they live with it. That being said their pain scale changes, when comparing the pain of someone with chronic pain to the pain of someone without is not only unfair but also unrealistic. Those of us live with a pain level that is higher than most people could function with. For example, my average pain level on this arbitrary scale is at 8 but in reality when compared to someone who doesn’t have chronic pain it would probably feel like a 12-15.

Navigating the healthcare industry is a minefield already, and then you throw in Donald Trump’s election, the healthcare “reform” he’s done, and the laws he’s set in motion in terms of discrimination make this an impossible task. This has given doctors the ability and validation to be jerks. This has allowed them to label us as these things and corner us because of the things we have no control over with no legal recourse. Slugging through this broken system is dangerous, anxiety inducing, and costly. Please take someone with you when at all possible so you not only have a witness but also someone to help you remember what was discussed in terms of treatment.

~Sarah

What Does Freedom Mean?

Freedom is a funny word
By definition it means independence
By definition it is the lack of oppression
The absence of restraint
It is privilege
Freedom is a fleeting sense of self
It is the illusion of control over fate
Freedom is a lethal weapon used when all else fails
It is the destructor
Freedom is the deceit of your nightmares
There is a girl I used to know
She could wake up before anyone else and make breakfast
And clean the whole house in one day
Go for a walk with her dog without feeling like she would pass out
She used to work a normal job
And advocate for her fellow survivors
She took advantage of her freedom
And then it was ripped from under her
With no warning at all
Out of her control
That girl is who I used to be
Today I am a prisoner in this body
My brain is screaming
My heart keeps beating
And my lungs keep breathing
But my body doesn’t keep up
It needs to rest
It tells me to stop and take a break
I don’t want to rest
There is work to be done
There is a life to be lived
There is a calling to fulfill
I had a plan
Damn it, I had a plan
I am free from my traffickers
And from the life that enslaved me for so many years
I am free from the addictions that plagued me
The self-harm
The drugs
the eating disorders
I am free from the oppression of the “church”
I am free from so many things that used to weigh me down
But I have this ball and chain
This ticking time bomb
Restricting my every move
Don’t eat the following list
Don’t do A, B, and C
Don’t live your life
Take this medication
And this one too
Eat a specific type of meat
Don’t eat to much vitamin K
Take it easy
You can’t work because *insert reasons*
I didn’t sign up for this heavy ass burden
I didn’t accept these terms and conditions
Freedom is a perspective
It is one’s ability to make the best of their situation
To gear up and fight even when they are tired
Freedom is a beautifully placed means to an end
It is where strife and fate collide
It is when the universe bestows a glimmer of light
Freedom is a perspective

~Sarah

Unquestionable

Not to long ago I considered myself a Christian. For years I was part of the church, most of my life actually. In early high school though I decided being part of the church was something I wanted for my life, my family and my children’s lives. It was what I needed at the time to cope with my life. I became part of several different churches, all with the same outcome. Disappointment, hurt, judgement, and confusion. Abuse. As previously discussed in NOT YOUR CHURCH, I have wrestled with a lot for a long time when it comes to the church. Only recently have I become comfortable with my struggle and really decided to sit with it. Quantify it. Discover it. To develop the ability to talk about it and learn from those experiences. In this time of discovery, I have learned 4 main things:

1. Religion is not finite: 2+2=4 is finite.One’s beliefs and relatability to the earth, other people, and [a] higher power(s) is something that is going to be tuned to what the person is experiencing in that moment.What is going on the world, how the climate is, and many other factors. A finite religion is going to disappoint. It is going to cause pain. Simply because it does not change.

2. Beliefs are going to and should change overtime as we learn and grow: When we are kids a lot of us read or watch things such as Cinderella and Snow White or more recently Frozen. These are fairy tales, where love at first sight happens, the good guy always wins, and an obstacle is overcome to create this love story unlike any other. Yet, most of us know that this is not always how life ends up. We grow up and learn that life is brutal, money is a very necessary evil, and love at first sight is not how love typically works. Beliefs in other things such as religion and/or ethics are similar. As we learn the ways of the world, our beliefs are going to change. Another example being that for most of my life, while I would have never admitted it, I was very colorblind in my thinking, actions, and beliefs. I had no idea the privilege I have as a white person. I had the very common belief that if I was in the wrong it was up to ‘those people’ to teach me. I fell for the ‘ we are all the same on the inside’ and ‘color doesn’t matter’ bullshit. I used words like ‘ghetto’ and ‘gangster’ to describe things that were neither of those things. These things contributed to the further marginalization of people of color, and while unintentional it was still very damaging and I had to grow. I had to learn. It is my job to change these beliefs, to learn and grow. To take responsibility for my own learning. For myself. In this I think religion should be similar, that we take responsibility for our own growth and we strive to make the world better. That old constructs are sometimes the very thing that needs to be destroyed in order for love to grow.

3. Creating boundaries and admitting fault where it is due: One might not understand how these things go together, but hear me out. Take the following as an example: In the recent months I have had some health issues which lead me to need home health care. One of the services they offered was a social worker, she helped me get access to some community services as well as getting my advanced directives done. Once these things were done the social worker came 2 more times, and while I agreed to theses appointments I really did not want her to come any longer as my needs had been fulfilled. The appointment before last she was at my house for 4.5 hours and the last one for almost 2 hours. Mind you this appointments are suppose to be 1-2 hours at most. After the previous appointment, I discussed with my wife and the speech therapist about my uncomfortableness with the situation and both told me I needed to set boundaries. This woman simply had my trapped in conversation inside my own home, and was not professional enough to keep things not private. She invaded my space, she demanded my attention, and she demanded that I share personal things with her in the name of ‘helping” me. With the last appointment I told her I had X amount of time to meet. This boundary was not respected so I called the supervisor and spoke with her about what the issue was and the visits have since ceased. – In this situation, creating boundaries was hard but it was necessary. It isn’t my fault what the situation was, but I didn’t set boundaries with the social worker in the beginning which was my fault. If we don’t set the correct boundaries, it is not our fault that the person in power took advantage of the situation; but it does then require us to do something about the situation. Taking the time to set boundaries in the most safe and healthy action we can take. This sometimes means involving someone else as a way to protect yourself from further harm.

4. Guilt vs shame: These terms are used interchangeably most of the time. Personally, I feel as if there needs to be a defined and distinct difference. Guilt is an appropriate feeling of remorse where as shame is an inappropriate feeling of remorse. If you steal something from someone a feeling of remorse is appropriate. If someone does something to you such as abuse, a feeling of remorse is inappropriate and damaging. In the church we are taught to shame ourselves for everything, this comes from the concept of sin in that we are sinful in nature and have to atone for the “original sin of man.” Atonement is inherently shameful. Oftentimes we are asked to atone for things that we do not have responsibility for. We are asked to atone for things that happened to us or things that we were forced to do because we did not have the agency at the time to say no. The church does not make that distinction in my experience. We are asked to seek forgiveness for any perceived wrong that we may have committed regardless of intent or ability to alter our circumstances. While seeking forgiveness is cleansing, it can also be self-serving to seek absolution from a godlike entity instead of the person we actually harmed. The church asks us to take on sins that are not our own and because of that we can harm ourselves in our quest to absolve ourselves of others sins.

I Will Find The Way

On July 5th I had 3 strokes, caused by a spontaneous vertebral artery dissection (VAD). In the middle of the day at work I was getting up to go talk to my manager and I got lightheaded and dizzy, I didn’t think much of it as this happens from time to time. By the time I got the 20 steps from my desk to his office I knew something was wrong. I was having trouble remembering, I had right sided weakness and trembling, my vision was blurry and parts of it were completely dark, I was hot as if I was having a hot flash, my breathing was shallow, my neck was tight and hurt to move, and my head was hurting as if I had just been hit with a sledge hammer. I told my manager I needed to go to the hospital, he offered to call an ambulance, and looking back I should have said yes. Instead I called a friend who was able to get to me pretty quick and take me to the ER. At my previous ER trip on July 2nd they did an X-ray of my neck and told me I had a pinched nerve. Despite my wife and I both asking for a CT or MRI just to be sure something else wasn’t going on, they declined. When I came back July 5th, (with all the textbook symptoms of a stroke) the doctor reevaluated the previous X-ray and said, “pinched nerves can get worse before they get better.” Due to all the new symptoms we again asked for a CT or MRI and were declined. This doctor sent me home with the same instructions as the previous doctor; if you have any new or worsening symptoms come back.

On July 9th we went back to the ER because again my symptoms worsened. – From the first set of stokes on July 5th I had no vision in my right eye and only tunnel in the left. – The doctor this time was very thorough, she did a CT and MRI and found the initial three (3) strokes. I was admitted to the neurology ward and kept for about 48 hours; I was put on Plavix and Aspirin, both of which are anticoagulants. These are the first go to drugs for people who’ve had strokes. I was discharged with a walker, instructions to follow up with an outpatient neurologist, and not to return to work until I was seen.

I spent much of the next week sleeping. On the 15th my symptoms worsened again, the weakness and trembling on the right side started, I had a slight slur in speech (new at this point), the pain and tightness in my neck increased, and I was struggling to walk. On to the ER again. By the time we got there my symptoms escalated to the point I could hardly walk even with the walker. They redid the scans and found 10 more strokes, 13 total; I had one on each side of the occipital lobe, 2 in the frontal lobe, one 90% the size of my thalamus, a couple in the midbrain and the rest scattered throughout. The anticoagulants weren’t working. This time I spent about 5 days in the Intermediate Care Unit (IMC), I was on a Heparin drip (intense blood thinner) for about 36 hours. Once the Heparin drip was in a therapeutic range they transitioned me off that and on to an oral blood thinner of similar strength, which I am still on today.

I had a few hospital stays after this, one of which the neurologist thought I was crazy and ordered a psych eval. The psychologist was really understanding and very much thought the neurologist was overreacting. This same neurologist then ordered an opthamologist eval because she thought I was exaggerating about my vision loss and was convinced there was something else going on. The ophthalmologists eval said that my eyes and optic nerves were completely fine, and confirmed the vision loss is in fact stroke related. The outpatient Neuro-Opthamologist also said that the vision loss is stroke related.

I have seen 3 different outpatient neurologists one who was a vascular neurologist, one a general neurologist, and the other a migraine neurologist. The first 2 said that my vision is not explained by the strokes, even though it didn’t start until the stokes happened and changed again as I had the other strokes. The migraine neurologist however, said that from what she sees on the scans and the radiologist notes the vision loss is stroke related and she is referring me to a stroke neurologist. I’ve also seen a hematologist, she confirmed I will be on the blood thinners for life as well as the cholesterol medication (this is more as a precaution/prevention). The hematologist is running a whole group of tests, which I don’t have the results from as of yet.

With all of the facts out of the way…I am exhausted, emotionally and physically. I am fearful and angry and confused, but mostly angry. What does one do with anger, especially with physical limitations? For my whole life I’ve trained myself as a form of protection; to turn anger inward and make it my fault, my failure, my [fill in the blank]. If something is my fault I can do something about it. This is not working any longer; I realized this when my wife told me that she is worried about me. About the mental space I’ve been in, about how I apologize for things I don’t need to be sorry for. She said I am headed down a dark and dangerous road, and she is right. She is so right, and the appreciation I have for her and her love for me. Enough to say these things. Enough to worry and be concerned. Her heart for wanting me to get better, not worse. I realized I have been self-shaming and self-loathing because of something I couldn’t control. I talk about the people in some of the Facebook groups I’m in and how bitter they are, yet that is the road I started to walk down. The thing is, that is not who I want to be. I’ve talked about how I don’t want to be this person, that I don’t know who I am, that I don’t like the new me. However as my wife said, I am becoming a self fulfilling prophecy. In reality, I have to come to terms with it before it ruins me. My marriage. My family. These strokes and health issues are out of my control, but I am in control of how I handle it. I am in control of how I use this unfortunate reality. I am in control of how I move forward from this. I don’t know what taking control, moving forward, and coming to terms with this looks like…but I am up for it. I will climb out of this rut as I have with others before. It takes concentration, tenacity, and perseverance; it takes an unwavering soul. But I am resilient. I am tenacious. I will find the way.

*HUGS WITH PERMISSION*

When working with survivors, a few things need to be clarified. Unfortunately some of these should be a given such as respect but the are not always. When it comes to survivors (of all kinds of trauma) it takes more work than usual to build and establish trust, the 10 things listed below are not the only things, just the foundation of trust.

  1. Respect – In reference to [survivors], respect means to treat with esteem, kindness, and equality. We are not glass antiques. We are not a pet. We are not your guinea pig. We are human, just like you.
  2. Say what you mean. Mean what you say. – This comes in for me when people say they will always be there for me. This has only been true for a select few people that I’ve known ever. Many survivors have also felt this over and over; weather its our families, the others we worked with that were sold, killed, or left behind  when exiting the life. Moreover those that decided to leave for no reason without an explanation. All this to say, refer back to respect; if you do not think or do not know if you can commit to something DON’T. If you say you’ll be there: BE THERE. If you need a minute or 7: SAY IT.
  3. Be intentional – We survivors know we are/can be a lot to handle. We know what we’ve been through is sad and angering and scary and a lot of other things. But we also need to talk about it. Being intentional means, if you ask a question, be ready for the raw, real, and honest answer. Going back to #2; words mean things, be thoughtful and compassionate with your words.
  4. Show Up + Be Present – While we understand things in life come up and needing to reschedule; its important to keep your word when you say you want to meet up. As with any relationship, the other important thing is to be present and engage. This is especially important because we (most of us) have not had people in our lives who really care and want to know us for a long while. If ever.
  5. Listen, acknowledge, and validate – Listening is something we, unfortunately have to ask for as survivors. Many of us have been burned this way by ‘advocates’ all too many times. Please listen to us, actively. This goes back to #4 and #3, show up, be present, be intentional. Acknowledgement, I feel should be a given, but it is not. Acknowledgement is done in many ways from showing up, to asking questions, to having appropriate reactions to the things we say. The combination of these things are what create validation. It doesn’t hurt to tell us that our feelings, thoughts, etc. are valid.
  6. When a survivor confides in you, thank them. – A lot of us are very open about being a survivor, but keep details to ourselves for the most part. Those that know more than that are privileged; if we feel comfortable enough to share our pain. Please thank us. This leads into the next factor.
  7. Never use a survivor’s story without EXPLICIT permission. – Our pain, feelings, experiences etc. are not yours to share. Period. If/when we give you permission to share something. It is for that specific thing only and for that one time. We have the right to know when, why, how, and where our story will be shared. We have the right to place restrictions on or revoke your ability to share at any point for any reason. Even if the reason is not forthcoming. Our stories are just that, ours.
  8. Don’t assume or compare – Just because we share characteristics of some/many kind(s) as another survivor, does not mean we deserve to be compared. We do not deserve to be expected or assumed to follow suit of others. Just because I grew up in a ritualistic cult gang does not mean I will have experienced the same thing or will heal the same way as another survivor who grew up in a ritualistic cult gang. Or anyone else for that matter.
  9. Ask before giving advice or touching – Not only is this polite, but also crucial for survivor relationships. We have had a lot of unsolicited advice over the years, it is a big thing most of us use to gauge a person’s safety level. The same goes for touch, we’ve had way more than our fair share of unwanted and/or unsolicited touching. If you want to build our trust, please, PLEASE ask.
  10. Survivors are more than our trauma. – We are more than our abuse. Our stories don’t begin and END with the things that have happened to us. We are human. We exist outside of our circumstances. This is something that is a huge factor for probably most, if not all of us. We are told in the life that we will never be more than a ho. We are striped of everything. Literally. We are lucky to be alive. To have escaped, if we have. If we are still in the life ALL of these are that much more important.

Undone

Sometimes you see
And you can never unsee
Sometimes you hear
And you can never unhear
Sometimes you feel
And you can never unfeel
Chemical wall color cans. Midnight tarp. Rusted restraints, bolted to the wall. I try to move, to get up. But I’m stuck. My eyes close, and it’s dark inside. Opening my eyes is hard, they must have given me the sleepy medicine again. I’m tied, arms at my side, legs together. They put me in a sitting position against the wall opposite where today I know, he was to be mistreated. Beaten. Injected. Penetrated. Murdered. Disfigured and put in garage bags. Disposed of; never to be found again.
Sometimes you see
And you can never unsee
Sometimes you hear
And you can never unhear
Sometimes you feel
And you can never unfeel
Flashes remain today. Flashes of the last moments of his life. His screams. His plea’s for freedom. For mercy. For pardon. The sound of her fist meeting his flesh. Her screams for me to watch. Keep my eyes open. Or I would be next. Blood seeping from his eyes. His mouth. His nose. His ears. I’m pretty sure he is dead. I don’t dare make a sound. I don’t dare plea for her to stop. I don’t dare look away. These images burned in my life forever. His blood chasing my feet. Running faster. As if asking me to save him.
Sometimes you see
And you can never unsee
Sometimes you hear
And you can never unhear
Sometimes you feel
And you can never unfeel
Many bags. Dark like her soul. Each tied off with little air left inside. Jars with fluid. With organs. She will sell these. A liver goes for $500+ nowadays sweetie. Especially one as young and healthy as his. She is a different devil now. Happy. Smiling. Calling me sweetie. This always happens after nights like tonight. It won’t last long. It never does. I could be next.
Sometimes you see
And you can never unsee
Sometimes you hear
And you can never unhear
Sometimes you feel
And you can never unfeel