Feeling like…a lost cause

Today was the first time that a PTSD trigger almost made me pass out. It had nothing to do with the known triggers. It was just a strong smell. My face got hot. I felt all the blood drain down to my feet. It was as if there were holes in the bottom of my feet and I expected to look down and see all of the blood had left my body. Almost everything went black. I couldn’t breathe. I had such dissociation that I am writing this in my bed 2 hours later and I have a complete time lapse. I know I’ve been crying for the last hour but I cannot tell you the steps that got me here.

Sadly, the person I was with did not see the signs. I wonder, if the signs are seen by others can they be stopped. Can empathy and understanding, focusing, stop dissociation? I don’t know. I don’t think I’ve ever had anyone notice and say, “ Are you ok? What can I do to help you.” My daughter did a few times but she was so far away in my mind that she couldn’t reach me. She’s only seen this happen a few times. I think the rest of the time the blank look and frozen body can be easily overlooked. I don’t feel truly understood. I don’t know if I can by others who have no idea what this feels like. I just don’t know. I have no answers anymore.

It breaks my heart. My heart is broken.

I lay here in a soaked bed of tears that I never cry and I know exactly why. Crying does not help me. It makes me feel more broken.

I’m so utterly and deeply sad that I don’t know if I could be consoled.

I suppose I’d have to be noticed to be consoled regardless.

My husband gave me such a great day too. He bought me a beautiful birdbath, took me to the botanical gardens, and went for a long walk with me when we got home.

But I lay here, at this very moment, and I feel alone.

I just see no saving me.

I sat here for an hour looking at my photos hoping I could focus on the beauty I experienced. It didn’t work. Not right now.

I just feel like…

A lost cause.

Love/Hate of me list

A few weeks ago I was in a store and someone muttered under their breath that I was a lesbian. It took me aback a bit. Then I was like “POWER TO THE WOMEN!” Call me a lesbian!

Last week someone called me a boy. They actually thought that since I was “small” and had “short hair” I was a boy. I must say I was a bit offended. Why does short hair make me a boy? But then again I don’t always care what people think of me. Why it bothered me that that person though I was a boy I have no clue. Just one of those days I think. It got me thinking about myself though. I thought about how I look, how I dress, how others perceive me and that led me to what I think of others which then led me to my Love/Hate about myself blog. This list gets things added to it daily! Like after I wrote this I just thought “OH wait, I Love how when I see a butterfly I feel like a child! That should be on my love list!” And then I thought ” I really hate that my muscle disease makes me pee in the bed which then gives me 4 hours of laundry and I HATE that about myself for so many reasons! On the hate list!!!” So here is my original list…

The things I love about myself:

1. I don’t judge a person for what they look like. Their clothing, their make up or lack of, their hair length, their shoes, or anything physical does not make me judge them. Whether they have a limp, a wheelchair, does not make me think anything. My thoughts on a person are not reflected or based upon how they look whatsoever.

2. I don’t judge based on gender identity, sexual preference, religious beliefs or lack of, political views.

3. I try to find something positive in everyone that I meet.

4. I try to find something beautiful in nature every day.

5. I give thanks at the end of the day even if it is the worst day EVER.

6. I will spend an hour sitting with a dying cow because I love every creature on earth

7. I will spend an hour trying to get a tree frog out of the house that has jumped in.

8. I will do the right thing even if it means it could hurt me or have dangerous repercussions EX: reporting nursing home abuse and being chased out of the nursing home by the owner for taking photos of the abuse

9. I stand up for those who cannot stand up for themselves

10. I know when to apologize and I do

11. I love with all of my heart

12. I will go into a house that is full of pesticide bomb just to save a cat and her kittens because their lives are worth it and I have.

13. I tell the truth

14. I have humility, integrity, and honor.

15. I am 100% faithful and devoted to my husband and always will be

16. I am 100% devoted to being a mother to my daughter and I will always fight for her and be her advocate

17. I try each day to evolve, be a better person. I have an open mind and am willing to change with new information and education.

18. I feel deep empathy for those who suffer and have been affected by tragedy and abuse and I want to make a difference to them.

19. I’ve never intentionally hurt anything or anyone. I will take great measures to help others and animals

20. I see each person for the individual that they are. What their heart and souls say matters to me. Their actions and their ability to love and have acceptance are what I want to “see.” I can look at a person and it will not cross my mind their weight, their scars, and what others may judge. I “see” what my heart feels by just being in their presence.

21. I respect others even if their views are nothing like mine.

Things I hate about myself (hate is a strong word so we will say, frustrate me about me)

1. I blindly trust

2. I forget to establish boundaries

3. I feel deeply and profoundly so that when I am hurt or even if I see someone else hurting it affects me for days.

4. I have not conquered even in the slightest % PTSD

5. I have not conquered even in the slightest % of past abuse affects

6. Physical pain in my body puts me in a foul mood and I am not as patient as I should be

7. That I still have dissociation

8. That perfume/cologne/scents affect me so intensely and ruin an entire day (ptsd)

9. That I have this muscle disease

10. That I cannot be independent because of the muscle disease

11. That I have to rely on others and they are often not there for me

12. That I feel alone even when I shoudln’t

13. That I am so hard on myself for allowing people in my life that end up hurting me

14. I hate that I have so much hate for my family. I wish I could just forget about them all together

15. The nightmares I have each night

16. That I don’t have more of a support system.

17. That society expects the “norm” to be THEIR norm and that if you don’t fit into a box then you are discarded, judged, humiliated.

18. That I feel that being me is not enough

19. That I cannot be the mom I want to be due to the PTSD and the muscle disease limits what I want to be capable of.

My yard today

There is a small patch of purple wildflowers in the corner of the yard. My roses have started blooming. One tiny yellow wildflower was just right in the middle of the yard.

As we were going for a walk I looked up to this tree in my front yard. I LOVE it! It made it’s own brace for the VERY long branch. When we first bought this place 14 or so years ago the builder told us to cut this tree down because it was leaning over. We didn’t. The fact that this tree could brace itself was too beautiful to cut down!!!

During our walk I did see this tree that I have never seen before. Why? Because after 14 years of walking around the same neighborhood I STILL find something new. It looked like it should be a patch of wildflowers on the ground but it was on a tree!

Isn’t that cool!

I hope you found some beauty in your day. I didn’t have to look far to find these things. I am grateful that even in my current depression I can STILL find beauty.

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.

Today’s mindful wheelchair walk

Today I woke up with still the after affects of the chemicals I was exposed to. My heart rate was in the 150’s

BUT I was determined to get up and go out and go for a mindful wheelchair walk and let me show you what I found. First there was a rock fence that had fern growing out of the top of it and I found it beautiful .

Then I made it to the prairie and the grasses were all this dull color EXCEPT this one clump that had an orange/red hue

Then I looked up and right above me were a few squirrels eating the buds off of this tree with no leaves. They were so adorable. I made a full conversation for them: 1. Susan! I did 10 pull ups did you watch me? 2. No Thomas I was busy storing food for the babies . 1. Well I am OBVIOUSLY nursing the babies and I am storing up food too but also doing some pull ups. Gotta keep strong to keep up with those 10!

Yeah. I stopped there. But it was entertaining thinking about them and watching them.

There is a tiny dirt road that I SO should not go down in a wheelchair with the potholes but as I was leaving I noticed the sky was turning purple. The birds were flying over.

One side of the prairie is ALWAYS pink and purple and the other always yellows and oranges

I turned down the little dirt road to see the purples that were forming. I immediately saw a tree that I wanted to get the sky behind and I was SOOO mindful. I was so focused on that sky and that tree that I did not know a donkey had wandered up until he put his mouth on my arm. This was one of THOSE donkey’s I was warned about was a biter. I asked him if he was going to bite me. He did the funniest things with his lips. He showed me his teeth. He puckered up, he did the fish face. I mean this guy was a character. I had one carrot left from feeding Arnold the pig and I put it on the fence post. He tried sooo hard to get it and couldn’t so I finally handed it to him and he slurped it up with his lips teeth nowhere near me. I was still adequately reprimanded by my husband and daughter for knowingly getting near a “biter” but I was careful, except when I wasn’t and was mindful. Oops. So here he is. Now he is blurry as all get out because i had my zoom lens and he was literally right there in my face! But I will post them anyway so you can see how cute he was.

And last but not least was that tree and the purple sky. All worth it.

It took away my anxiety for a short period of time. Any amount of time not having anxiety is a blessing.

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..