The horse that God sent

Laura was my best friend in elementary school. Best friend in the world. I would go to her house for sleep overs and we would laugh, ride horses, run from her bull, laugh some more. Laura was authentic. There was no hidden agenda ever. She was real in all ways. She was the only real thing in my life during some of the worst years of my life. In a world surrounding me with secrets, abuse, and lies…I had the unconditional love of my friend Laura. There was always something about the way she looked directly into my eyes…

We lost touch for years after highschool but reconnected after she was diagnosed with cancer. No time had passed. We were in the third grade again and it was the next day but 30 years later. I had one year with Laura. She had “Laura’s warriors” which was a huge group of supporters. We talked about this. I had a muscle disease and had a few people. She had cancer and had over 300 people. Cancer affects everyone in some way. We all know someone who knew someone, or have a friend or loved one who has fought the battle. Some have gone into remission and some have gone to be with God. Laura had hundreds of people taking care of her. She chose to take care of me. She had a go fund me for all of the alternative treatments she was trying since the chemo did not work. She used some of that money to pay for ME to have alternative treatments for this disease I have. I’ve NEVER in all of my life known ANYONE as selfless as Laura. This is not to diminish those who have supported me throughout the disease I have, but Laura… She would have chemo and then come to my house and make juice for me or dinner. She would take time away from her own family to come and hold me in her arms and pray for me. No one, other than my husband, has ever held me like she did. She understood that having this muscle disease took away so much from me. She understood how lonely it was and isolating it was. We told each other all of our secrets. I told her of some of the abuse I endured in my lifetime that I have never told anyone else. I knew she would not judge me but would instead love me even more. She really hated what men had done to me. She wanted to fight for me. That girl was a fighter. I spoke to her the day before she passed away and she told me that she was fine and she loved me. She never gave up.

Cancer touches all of us. It took away my best friend. I watched her in pain. I watched her suffer. I loved her with all of my heart.

The last few weeks have been very difficult for me. I have been suffering. I have been haunted by all of the men who have harmed me. Haunted. Ptsd flashback. Nightmares. Billboard signs with their photos reminding me around every corner that I will never be allowed to forget. I have also had severe muscle pain.

Let me say that I moved forward from the abuse. The abuse is still with me but I have moved constantly forward. PTSD keeps the abuse there but I chose to move forward anyway.

I MOVED FORWARD. I go out every day with this disease and I fight it just like Laura fought cancer. I look for the beautiful things that God has placed before me and I appreciate every single moment. I didn’t choose to be abused. I did not choose to get a muscle disease. Laura didn’t choose to have cancer. It took her from me and her children and family. I am so glad as I look back that in her last year of life she had that team. Everyone should have a team! Today I saw a woman wearing a t-shirt about team so and so fighting for cancer. I don’t have a team.

I don’t have a team because the society we live in does not give abuse victims a team. Muscle disease sufferers used to at least get a DAY with the MDA and Jerry Lewis but that was taken away. Mental illness does not get a team. We sure do need one though. We are urged and encouraged to keep silent and let the stigma continue.

Nobody tells someone fighting cancer to just let it go, move on, etc. I know not everyone has a team fighting for them that has cancer. I know many people keep their fight with cancer a secret. It may seem like I am trying to make a comparison between cancer and other diseases but I am just expressing what I have witnessed. Their is a society shame put on victims of abuse and mental illness. There is shame in admitting vulnerability with muscle diseases and that it may trigger other PTSD emotions.

There is no shame in saying you have cancer. And why would there be. There shouldn’t be. I guess that is my point. You didn’t ask for cancer so why would anyone want you to be silent about it? They wouldn’t. Yet I am supposed to be silent along with thousands of others about our daily lives after abuse. Whether it be domestic violence, rape, any kind of sexual assault or childhood abuse, silence is the what people want.

Who decided to shame victims?

Who decided to enable abusers?

What is this culture that we live in?

This culture is shameful.

Laura and I talked about these issues. She knew that our stories were not a competition. She was fighting cancer. I was fighting a muscle disease. She happened to have a lot of support. I did not. Not for the disease, not for the PTSD, not for the abuse, not for the anxiety. I was for the most part alone. No calendars were set up with meal deliveries for me. No car rides to appointments were scheduled. Most of what I was going through no one was there to listen and she saw this and stepped up even as she herself was dying. She is and always will be my hero. She did what healthy able bodied people can’t but should.

What people don’t understand is that everyone you know has either been abused, knows someone who has been abused, or has loved someone who has been abused. Just as cancer has touched so many, abuse has as well.

NO ONE SHOULD FIGHT ALONE.

My story is not unique. Almost every woman I know has been abused or knows someone who has. In my years as a chaplain for hospice almost every person I met with had a story of abuse. In working in wild life rehab there was animal abuse. No one talks about it though. No one listens.

We have created an environment where it is not ok to talk about our emotions, our fears, our anger, or our memories. My memories include heinous abuse. You don’t erase a memory good or bad. It is part of my story. I cannot control when these memories surface nor can any other trauma victim but we are encouraged to keep it silent.

I told Laura everything. I sat with her every day of her chemo treatments and we talked. About everything good and bad. No secrets. In her last week of LIFE she sat on my couch with my head buried in her chest, me sobbing as she prayed and prayed and prayed that God would heal me from the pain inflicted by men and by the aftermath and by this muscle disease. Like I said…not many people exist like Laura.

I didn’t ask her to. I didn’t want to take time away from her family. But I was her family in her heart. My husband drove me to be with her during chemotherapy and sat in the waiting room for hours while I sat with her. She then sat with me. We loved each other wholeheartedly and unconditionally. Our relationship remained true and authentic to this day. Even as the years have passed since she has been gone I have loved her the same.

I love that she had 300 people and more that were Laura’s warriors. I love that she felt loved and cared for. It doesn’t take that many people though and in fact with me it just took one person and that was Laura. She was really all I needed to feel like I mattered, my life mattered, I was valued, and she was my team, my warrior.

My husband has always been that person for me and I know that. Women though often need other women who really “get” us.

I miss Laura every day. I miss what she stood for. The authentic, purity, non-agenda, fun-loving, tilt your head back and laugh with no apologies person, and put someone before yourself person.

She knew the culture I was going up against in my refusal of being kept silence in the abuse. She knew the fight against the stigma of PTSD and anxiety. She knew how alone I was in this fearful loss of self with this muscle disease.

Why doesn’t anyone else know?

Was there only one Laura?

Today I went to the park with my husband and fought back tears of pain from the disease and pain from the past that slapped me in the face by means of a billboard with a man’s face plastered on it that nearly destroyed me.

I saw the wild horses in the distance and do what I always do which is feel elated first. Then protective second. I want to get to them and make sure no one goes near them and no one tries to take selfies with them and keep them respected as the wild creatures that they are.

My husband steered my scooter for me and I sat back in my chair and just watched them. The wind blew and I smelled them. It is my favorite smell. They were across the water and I took many photographs as we got closer on the path. I have a zoom lens and never intentionally go near them. About 4 people walked past and I told them to please not go up to the horses if they get closer as they are wild…like I always do. After everyone passed us I put my camera down and watched. I watched them twitch their tails and snort and breathe. I saw each greet the other and nudge the other and nibble on the other’s back. I sat perfectly still and quiet as one of the pregnant mares walked from across the prairie and all the way up to about 2 feet from me. She ate grass and looked at me the entire time. She would step one step closer and look up and graze some more. My husband was behind me. That horse looked me in the eyes and I watched the baby in her belly moving all around. I smelled her and listened to her breathing. It was like Laura was looking at me again. Knowing everything that I felt and experienced. I think that horse was thanking me for always looking out for them and keeping the other people away. I feel in my heart, after these last few weeks, God sent that horse over to me to remind me that I am NOT alone. It may be a horse looking at me in the eyes but I was not alone. I have watched these horses for years. They do not walk up to people. They run from people. This horse walked right up to me and I cried. I cried because I was not thinking about anything but how blessed I felt in that moment. How that horse made me feel like I mattered. A HORSE! The billboard and the abusers and the diseases didn’t matter. It was all gone in that moment. It was just that horse and me. I slowly backed up my scooter because I did not want her to get used to humans like me because frankly I don’t think there are a lot of people that are like me. Not many that I have met. Some. Not many. I didn’t want to back away but out of respect for her being wild, I did.

That horse has a herd. She has her own team that supports her and fights for her and loves her. I have watched them and I know.

God sent me a little reminder through that horse looking at me just like Laura used to that even if we don’t have 300 warriors we are not alone. A horse made me not feel alone.

It took a horse because so many humans are living in this culture that they are enabling and accepting that keeps trauma victims silent.

I have intermingled being a trauma victim with having a muscle disease because being a victim of a crime is not the ONLY thing that we fight. I’ve got a list of things I am fighting…doctors, nightmares, lyme disease, ptsd, anxiety, depression, loneliness, etc. I can’t have a team because no one wants to stand up and fight for these issues. And that is so very sad. But for tonight at least I’m not going to focus on what’s sad. I’m going to look at this horse, think of Laura, and be thankful of the little blessings in my life.

Their is no fix #chronic illness #PTSD

I’ve tried in the last year to live. I’ve pushed my body and ignored the pain. I’m not on pain medication nor have I ever been on any. But I live in chronic pain. Whether it is from the muscle disease, or the trigeminal neuralgia, or the vulva dynia, or the seizures, I am in chronic pain. Certain pains I have pushed through. The Lyme disease pain in my joints that makes each key I type feel like my fingers are in a vice (no clue how to spell that), and now the Rocky Mountain Spotted fever pain where that tick bit me a month ago that feels like someone is sticking me with a needle right this moment, is very real. The bone pain from the osteoporosis, which I was told could not possibly be from that but maybe from my copper levels or iron levels being so high, doesn’t matter because my shin bones ache as do my toe joints and my hips. I am in pain.

None of those things worries me as much as the multiple chemical sensitivities. That is something that I go great lengths to avoid having a reaction from. Sometimes I get that and the PTSD with smells confused. I think while at the dentist, “ OK, I have covered the dentist chair with a sheet to avoid fabric softener or cologne,and premedicated with an antianxiety medication and an antihistamine so I will be sure no stress caused seizures,” but I forgot about the multiple chemical sensitivities. I KNOW I have this which is why our garage door has not been fixed, our house has not been painted, our back rooms have not been renovated. I know this because when my neighbor sprayed with pesticides in his yard and I unknowingly breathed it in while outside, I got very ill and had to be medically treated. I KNOW I have this so I take precautions, I avoid being in the car when it needs gas put in it, etc. While at the dentist though, for just that moment I forgot.

They were making dental impressions for my teeth and my nose started to drip. I started to drool. I thought nothing of it until my entire mouth started to burn and my tongue went numb. Fast forward and four hours later, a few blisters in my lips and the roof of my mouth feeling like it got burned by eating hot pizza, the incident had passed. It took lots of treatment, care of the dentists and lots of antihistamines.

The incident itself passed but…

It hasn’t though. That was a few days ago. I am still haunted by it. Terrified by it. Paralyzed by it. I wake up in a sweat and anxiety attack over it. BECAUSE the reality of my life is this…if my house burned down there would be not one “safe” place I could go. I was reminded of the severity of the chemical sensitivities at the dentist and now I remember and cannot forget. Every hotel room has plug ins and fragrance and cleaners and sheets that have fabric softener. When my husband was away and staying in hotel rooms it took weeks to get the smell out of his clothes and some of them I just threw away because it made my nose run to even be around them. I couldn’t even wash my clothes somewhere else because I don’t know one person who uses no fragrances in their washer and dryer. The laundry mat would be a death sentence as everyone before me would have left a residue of 3 month stay in smell. It reminds me that all of the things that NEED to be done in our house cannot be done because it would affect my health and I don’t even have a place to go for them TO be done. So I sit here knowing I have no place I could go because I am a prisoner due to this health condition.

This feeling is so vulnerable I don’t think anyone has any idea. Even writing this I wonder if anyone in the world would know what THIS, just THIS feels like. To be in pain, to have to push through it day after day, and to have this underlying chemical sensitivity which should or could be rather called “allergic reaction to todays world,” is just too much.

Today I had to get labs due to the latest tick bite that has left me in much more substantial pain. We need to see, how bad is the infection, are there more than one infection from this tick. Because ofcourse four years of treatment for the original diagnosis was NOT enough I just HAD to get another tick bite. I wore a mask so I didn’t pick up anyone else’s illness. I brought something to sit on so I didn’t pick up anyone elses lotions or perfumes. On the way home all I could think, due to my PTSD, was, “ I just need the water to be working and the electric to be working so I can shower anything off so I can get in bed and try and cope with the pain that will happen to my muscles.” I was thinking this because of the smell of perfume that got on my hand from the prescription given to me. I should just wear gloves when I’m out but…carrying a pad to sit on and wearing a mask probably freaks people out enough. If they only knew…

The world goes on. My husband has a job, a life, runs errands, comes home with the colognes of every man he encounters on him and that is just life. No amount of cognitive behavior therapy will fix that part of PTSD and if it did then my husband coming home every day for the last 22 years from his job would have fixed me.

I have unfixable things. I have untreatable things. I treat and cope with what I can. There is some of it though that is truly unbearable. It almost makes me miss the “numb years” when I was robotically going through life 25 years ago.

But here I am now. My fingers throbbing with my heartbeat after typing this, knowing it is 2am and won’t be able to fall asleep and that there are no answers to any of my health problems. There are no magical places with no chemicals and no fragrances. There are no safe places for me other than right here in my bed which is still filled with pain and suffering.

It’s why I post the pictures I do. It is my effort to still live. But I have to tell you, that is becoming increasingly difficult and life as of late has become increasingly unbearable.

Throw in the broken cars and the broken well and the broken septic tank drainfield and a sick child…I think back to the “friend” (wow I have used a lot of quotes in this) that told me that I wasn’t as sweet as I used to be all the time and that these diseases have made me angry and I think well no fucking shit! Throw in some, or rather an entire childhood of abuse, shit family, and yeah, I don’t actually mind being angry. I more mind how I feel at this moment, which is utterly defeated. And the knowledge that all the therapy in the world won’t fix this. I have no fix to any of this. Not one thing! Which leaves me vulnerable, helpless, and very very alone.

Trying to find the calm

I woke up this morning with a heavy despondency upon me. I tried to not cry all morning and the sadness just lingered. So I took a 2 hour wheelchair walk. I was frustrated at first with the pain my shoulders, and tremor. I was frustrated that I couldn’t just go out with my two legs and go for a walk and photograph from all of the angles other people could. I was frustrated about many things. Mostly with myself. I was getting tics and tics make me feel weak. The inability to control them makes me feel weak. Weakness makes me either feel angry or vulnerable. I think I had a mix of both. It took me 2 hours to “fix” my emotions and find calm. A hawk flew up to a light pole. Then he followed me along my walk. He would fly in front of me. Then behind me. It was pretty darn cool! I have been trying to get a bluejay picture for TWO YEARS and I finally did. It was blurry. But I didn’t care. My pictures are not about clear they are about that moment and I got that moment!!!! I got up and stood underneath a tree but that hurt my legs and arms so it didn’t last but I got a really neat one shot picture of that tree from underneath it. On the way home I saw the hawk again. He landed right in front of me.

I got home, I had a brief conversation with my husband that triggered at least 1000 PTSD emotions and I had to go out AGAIN to the prairie which is the only place that I think can truly “fix” a PTSD episode. I went to see Evie the horse (she seems to always make things better) and on the way saw some deer and a redwinged black bird and a gorgeous sunset. Being able to go there has saved me many a day.

I’d like to share all of my photos of the day.

I guess, I want the person looking at them to know that, being in a wheelchair is not the same as a standing photographer. I have limitations, but don’t we all. We all can have excuses and emotions to stop us from doing what we love or what we know will calm us. I keep on pushing forward. Today was a hard day but the pictures show the moments I had of happiness. I hope you enjoy them.

Moon pictures and some birds and some thoughts

Last night I ventured out while the sun was still up and the moon had risen at the same time.

It was a beautiful night. The prairie was so full of tiny shrike birds and they were on fence posts and trees along the road. The sky changed from pink to purple to dark in just a few minutes and I got it all! I was so excited to see when I got home. Unfortunately, I just could not get the birds to be clear flying under the moon. Which gives me more reason to go back out tonight and try again.

I have to wake up with a purpose. If I don’t I will let my worrisome thoughts or anxiety just take over. If I focus on my purpose later or even create a purpose now then it helps me immensely. So my purpose now is to eat healthy food and sit outside and listen to the birds in my back yard. My purpose later is to get a photo of birds under the moon. I missed the eclipse because I was sleeping THANKFULLY!!!! I’m always glad to sleep!

My parent’s fail

*language

After learning that my doctor in England doesn’t think he can search any longer for the mutation that has caused my disease, I went to all of my saved emails. I deleted every correspondence from the last 11 years with him. Hundreds of saved emails pondering, hoping, trying. Since, in 11 years I am no closer to an answer, I deleted them all. Chapter closed. Future of this muscle disease and finding out what is wrong with my daughter marked :unknown.

While there in my “Doctor emails” I discovered a few other emails that got saved in that file. One was from Mikell who I loved dearly. Later in life he sent me a poem that he had written for me dated march 1989. I met him in a mental hospital after trying to take my own life. I looked at that date and proceeded to stay up the rest of the night with my mouth hanging open.

I was only 16 years old. I turned 17 the next month. Putting together the time line of my life has been hard but as pieces keep fitting together and I see the full puzzle it brings up emotions that I have to come to terms with, accept, and move past. Right now, since last night, I am furious.

My social security records, that I found during the burning of my medical records, old photos, baby book, the past, etc, said that I went to my job in Indiana in 1989.

So let me get this straight…I tried to kill myself based on years of abuse that no one cared about and my parents allowed my brother to continue to be around this man. I was then put in a mental hospital where I met Mikell who I fell in love with and he wrote me a lovely poem. Then, my parents felt, it was ok to send me off to Indiana to waterski for the summer? They weren’t there. My “twin” brother was there. That was the year I was picked up at the airport by “The manager” which if you search my blog for that title you will learn all about him. Anyway, my parents felt it was in my best interest to send me to a mental hospital, then send me away to another state without them for a summer. What on earth?!!!! It is no wonder I quit school,, got my GED, went to live in my car in the parking lot of seaworld while my mother had her newest fuck buddy to keep her focus on. Not caring that while looking out my bedroom window was a child molester still free right across that lake.

I am constantly trying to grasp the magnitude of what happened to me in its entirety but I get fragments and put them together to see why I am struggling now. I am understanding myself more and more as I piece together the past. I blocked out so much due to dissociation and PTSD.

I was only 16 years old. I turned 17 and it was OK for me to be sent away to work? Oh my parents will tell you that I loved waterskiing and I was just living my dream.

Yes, this is when parenting comes into play. Be a fucking parent!!!!! Was it important for my brother to keep skiing with a child molester to live his dream. At 16? And me living a dream at 16 to ski in a professional ski show? Was that more important than stopping LIFE until they made sure their daughter felt safe,, protected, recovered? Be a fucking parent for fuck’s sake! My parents did not know how to be parents. As many parents do not and yet they find a way to help their daughter feel loved and feel like she mattered after tragedy struck.

I shake my head as I write this. Over and over again I shake my head.

My parents failed on so many levels. We are talking like parking garage levels 1-10 and they created a basement floor on the levels of bad parenting. Basement parenting. That is what they did.

The anger at my parents, I felt came from their leaving 3 years ago in the midst of my daughter’s illness, my muscle disease, at the truth of the extent of the abuse and my life and their inability to handle that truth. I thought I was angry at their inaction, their running away, their denial. I didn’t realize as a teenager their decisions and how bad they were. A 45 year old I can clearly see that they contributed to where I am right now and that makes me sick.

A pastor tried to help me, that was denied due to my father’s own secrets (so I was told).

My parents let my brother keep waterskiing with the man who had molested me for years.

My parents sent me to ski in another state with no supervision or protection at 16 years old RIGHT after getting out of mental hospital and attempted suicide.

No wonder they ran off as soon as I called them on their bullshit in my letter. They had to face what shit job they did as parents.

Out of the millions of options they had to help their daughter, they chose none. They chose 1. Ignore. 2. Not validate 3. Blame 4. Abandon 5. Deny 6. Tell no one that could have helped, lie to their friends 7. Turn away someone who could have helped me 8. Put me in situation after situation with adult men, unprotected. Just read my past blog posts over the years.

And I have wondered for most of my life why I could just not recover!

I put the blame on the abusers.

But my parents…they could have been present. They could have tried, and tried, and tried some more. Even now.. three years ago I guess I gave them an out. They got to choose a letter as a reason to end THEIR NEGLECT and shit parenting. But made sure they blamed me, accused me,, on the way out..

My “twin” just stopped talking to me. My older brother blamed me for purposely hurting our mother. That brother that my mother put up for adoption who she won’t even claim to others as her real son!!!! But I am the one who hurt my mother? No. my mother hurt herself.

At least I own up to my own shit. I know the level I am fucked up. I don’t pretend to anyone that I am ok. I can tell you that I stayed up all night long because my husband is gone. I have worries of him coming home with a thousand smells that will trigger PTSD. I know this will happen so it is a realistic anxiety. I sleep when he is here because I feel safe. When he is gone I don’t feel safe for my daughter or me. That vulnerability brings on and triggers PTSD all by itself.

I wonder fucking why!!!!

So will I blame my parents my whole life? Use them as a crutch to not get better and move forward? Oh hell yes I will blame them for the rest of my life. I despise their existence for what they have done. Will I let it stop me from moving forward, hell no!

I am just putting pieces together.

As the pieces fit I see who fit them together for the better part of my life and I was not the puzzle maker. My parents were, they tried to mold me into a copy of the perfect painting that they wanted. They are IDIOTS. Had they just seen they had the sweetest daughter! Had they just looked at me and really seen me…It’s so sad. I shake my head again.

So here I am reading this poem that Mikell wrote to me back in 1989. It said that we would be together no matter what because even death could not separate our love. Mikell died a few years ago of a heart attack while traveling in Asia but he and I had reconnected (friendship) right before that. The memory of why we didn’t stay together is a little shaded. I know my parents and “twin” didnt like him because he wore eyeliner and had a mohawk (I got your back Mikell as I mohawk my own hair in memory of you all the time now). I don’t know if they sent me off to ski in Indiana and that was why. Memories are still sketchy.

Many people try to do some sort of odd sympathy thing/comparison thing with my memory loss lately. After the 5 grandmal seizures, I remember 10 years and before much better than I can the last 2 years, yet I remember 20 years ago pretty well with the exception of the PTSD blackouts. Ugh. What a mess. So the latest comments are “ It is just your age. I forget things, names, lately too.” Another favorite “ I walk around looking for the phone when I’m on it, your memory cannot be worse than that!” Somehow sharing their own memory loss with age is supposed to make me feel more normal? NO it makes my memory loss feel minimized.

No shit age affects things, as I have walked around looking for a brush while the brush was in my hand many times. Comparisons just minimize though.

After the seizures, I will look at the toaster and not know how to toast my bread. I will pull up to the key pad at the gate and not realize why I cannot get to it because my window is rolled up and my brain does not compute to roll the window down.

My brain was scrambled in the grandmal seizures that put me in the hospital. My brain was royally fucked by constant trauma and PTSD and dissociation and black out periods. So while I am sorry that your age has set in some word recognition issues, you are not me and I would fucking LOVE people stopping trying to minimize my life in every area!!!!

If you lost your dog. I could say that I experienced loss of my dog as well. But do we feel the same? No clue. After my dog died I wished I were dead as I had lost my best friend and the last living thing that loved me unconditionally. If your mom died and mine just left could I say I understood loss? I could understand what loss feels like but I would have no idea how it felt to have a death of a mother that I adored. Just like a mother who has lost her child. I would not know how she felt. My daughter has been critically ill for 4 years now. If your child is sick with a cold, flu, broken leg, you have NO FUCKING CLUE how it feels to be me. If your child has a chronic illness then you probably know some of the emotions I am feeling. But do you have a helpless child and also sufferer from PTSD and a muscle disease with a husband gone?

Right…we all are going through our own shit. Everyone. This is not a comparison game especially with memory, illness,, and abuse. We have a “sense” if we have been raped what another rape victim may have felt but still have no idea what that person is going through.

I am processing the past, processing the present. Trying to find the best way possible to heal. I need love. I need empathy. Empathy is not sympathy or pity or comparing. Empathy is saying “I am so sorry you are hurting. Is there anything I can do.” And sometimes empathy is just presence.

Oh what I would not do for the presence of my dog right now. Or Mikell who seemed to at 16 know that laying my head in his lap and stroking my hair was. ENOUGH. Or Laura who held me in her arms while I cried even when she herself was dying of cancer. Each of us knew HOW to really love.

Oh what I would not do for someone to just say,” Bethany, I love you. I am here for you.” Instead it is “ bethany you are strong. You’ll be ok.” You know what. I am not strong. I am not ok. And I do not know if I will be ok. I do have persistence and fight in me..

I am sharing this entire very long story to shed light on my life a little more so that others can maybe learn, the importance of

1. Patience

2. Unconditional love

3. Presence

4. Perseverance

5. Not giving up on your children

6. Protecting your children

7. The long term affects of parents who chose to be narcissistic and keep secrets

8. The long term affects of PTSD and trauma

9. The importance of giving empathy

10. The wisdom of silence

11. The power in the truth

12. The healing in validation

13. The road to recovery needs support

14. Don’t give up on those you love

I have to end this blog post with two things. I could have easily made this 4 posts and who knows if anyone will read the entire things. I can hope they will.

I recently realized after seeing a baby onesie how early parents sexualize their children. Here are some of the onesies I found online just with a quick search.

For fuck’’s sake people.. let your children just be children!!!!!!!

For me. For every part of childhood lost, let your children be just children..

To end this on a good note…your child is worth fighting for. Fight for your children.. please..

The what if list that can be wiped out by kindness

Scheduled dates give me a great amount of anxiety. There are a variety of reason’s why. 1. Do I drink water ahead of time knowing I will need help getting in and out of the bathroom in my scooter 2. My scooter will then be germed up with other people’s urine that will have to then be cleaned by me 3. My scooter will smell like whatever restaurant and then come in the house and I won’t be able to get away from the smell 4. The overstimulation of the restaurant 5. Will I get enough sleep the night before to even feel well enough to go. 6. Do I take extra breakthrough seizure meds to make sure I don’t have a seizure and then will that make me not even hungry. 7. While in my scooter will the table and food be easy for me to access and eat comfortably.

This is why any trip out can be stressful. This is why my husband is great about my spontaneously saying “ Lets go to Miapa” a Cuban restaurant that is my new found love!!!!

Today, I woke up, hadn’t had a lot to drink yet so I knew the bathroom would not be an issue, had just taken my seizure meds so that would not be an issue so I decided to go for it.

I did great until we got there and then I forgot to add to my list, anxiety (a fun partner to Tourette syndrome and OCD). I got to the table and was squished. The tail end of my scooter was sticking out, I knew there was a possibility that someone would accidently bump in to me. Forgot to add that to the list too. If someone bumps into me then it jars me, startles me, triggers PTSD if I am startled. An entire ball of….well something! All because I could not fit under the table and close enough to the wall.

ALL fixed by the waitress who for some reason could see my stress level. I have no idea how she picked up on it, but she asked the guys behind us to move their table back, readjusted our table by turning it sideways and boom all was well. My moment of panic subsided as she squat down next to me and asked me if she could help me out with the menu.

Just one kind person wiped out my list. An entire list, wiped out by kindness. My husband also was acutely aware of my distress and asked me if I was ok, validating that at the moment I was not and he noticed.

Such little things are such big things in my world.

I closed my eyes as I ate each bite of food and tried to tell what flavor I was tasting.

When we got home we went on a walk to look for pink. Any pink. There is a pink Camelia next to our house that I saved years ago with vinegar and dish soap. I cleaned each leaf that had a fungus on it. It took me hours to clean that plant with my concoction. Today I counted and stopped counting when I got to 100 buds on it. Some barely starting out, some about to bloom. Two were actually flowers. There were pink Camelias starting to bloom everywhere. Some had a surprise visit by an ant or a bee just as I was taking a picture. After our walk we went to the prairie because I wanted to wait for the pink. There was every shade of blue and orange. I waited. I even went to give the sweet horse a carrot and come back and waited some more. Finally, there was some pink. I looked at it. Then I closed my eyes and felt it. The calming of standing out there alone with the tiny wisp of pink in the clouds as the sun set.

I wondered for a minute what the infrequent passerby drivers must think as they occasionally pass me on the prairie. They don’t know I have a muscle disease. They don’t know my challenges and how hard it is to stand there. They don’t know of my long whatif list that sometimes plagues me that can be wiped out by the setting sun. They don’t know that in that moment there ARE no challenges and it is just me and the sky. Maybe they can see it on my face and know the peace I am feeling like the woman in the restaurant knew by looking at me the distress I was feeling.

Today I had gratitude for all of the pink and the way that the pink made me feel. I also had gratitude for those who notice and truly see me.

Poetry


Mental illness

It holds an unfounded stigma.

To slander 

Or degrade

To discriminate.

Because of illness

Makes one quite the pathetic enigma.

Should it not be a crime?

To intentionally 

Revictimize?

Based on the state 

Of a diagnosis 

Of the mind?

Yet they do

Lower themselves

To a lesser

Of a snail’s slime.

Which reflects only a mirror

To them.

With that

I am perfectly fine.