He who knows me.

My husband met me on my 23rd birthday. He became my best friend. I told him everything about my first 23 years not knowing that this man would one day be my husband. I confided in him every single detail from my past. Completely unfiltered and raw truth. I will be 46 in a month and we will be celebrating our anniversary 2 days before. When we first met I went to the gym with him, we rode our bikes for hundreds of miles. I was an athlete then. He was with me as my body developed pain and as the muscle disease set in. He watched as I lost the ability to run. I lost the ability to climb stadiums with him and even climb stairs at all. He watched as I lost the ability to drive the car, hold the hair dryer, cook a new soup of the week. He was there when I got the diagnosis, when the MDA bought my motorized scooter. He has continued to be my confidant. He has driven me to every appointment, every meeting with a friend, every trip was because of him. He has been there for the 11 years of comments I have received in my scooter. The jokes made at my expense. The judgment. The way I have been treated in department stores, in restaurants and by my own friend. He has seen it all. I never say a word and get home and kick myself for not being able to advocate for myself EVER when it comes to my being in a scooter. He knows my struggles with not being able to speak up for myself, defend myself, set boundaries, or have a voice at all.

I’ve bought shirts that say don’t touch me to ward off the pats on my head, neck and shoulder and back whether friendly or aggressive, my shirt has helped. It still didn’t give me a voice.

My daughter has watched since she was 15 the comments that have come out of the mouths of the ignorant and rude when it comes to me being in the scooter.

I could list all of the comments from “ woman driver watch out, “ to “ who let you drive that thing,” but that’s not where I want to go with this. Lets just say I have had 11 years of unwanted comments when what I want to do is just be out with my family and be treated like anyone else. And the way anyone else is treated, is they are not commented to or on or about.

This past weekend I wanted to go to the botanical gardens. My husband dropped me off so I could have some alone time taking my photographs. The gardens are miles and miles of paved pathways through various gardens. He walked me into the building to open the door for me. As we were walking up a man and a woman passed us and the man said, “ Man I need to get me one of those things.” He had obviously just come out of the gardens and was tired. It seemed novel to have a scooter to zip around the gardens in his mind. The tone he had unnerved me. The disregard for my actual need of the scooter made me do what I have always done before, lowered my head. All of a sudden this empowered feeling came over me and I said, “ Do you want this muscle disease to go along with it?” My husband was so proud of me we did a soft fist bump in the air. He dropped me off and I even called him on the phone elated that I had found my voice finally. I had felt a little nervous going to the gardens alone because he always had gone with me. Knowing I could speak though made me feel safe to be there alone. The gardens have a few miles deep in the forest and then over bridges into a bamboo forest. There is a certain vulnerability being back there alone but I felt completely comfortable focusing on my photos and the flowers all by myself.

When I got home I reactivated my facebook account to share all of the beautiful photos I had taken. I then wrote about how I had finally found my voice and what transpired with the man.

I got 20 negative comments. Every single person felt sorry for the man that I was “rude” to. The comments just kept coming. My day full of joy and confidence, my 11 years of silence finally broken was squashed in 20 comments and I cry right now as I write about it. Each person was more an advocate for a man they did not even know than the person that they did, me. If my husband was proud of me and fist bumped me for using my voice after watching my struggles that should tell you something. But it told them nothing. They cared more about what he may have thought as if I am so ignorant myself and full or insensitivity that I would intentionally hurt someone’s feelings. I mean, as they put it “ what about invisible illnesses?” So now they are advocating for invisible illnesses. Do they not know me? You will never find another person who advocates more for invisible illnesses than I do. When I see a person parking in a disabled spot I know that they may have fibromyalgia, arthritis, heart issues, organ transplant, you name it and I have imagined what that person is going through as I AM GOING THROUGH it. Not one person was there but my husband. He knew as well as I did that there was not one thing wrong with that man other than an uncensored tongue that thinks it’s ok to comment on a woman who has to use a scooter and wish he didn’t have to actually walk around the garden with his mate. I thought I had gotten used to having no one advocate for me. I hadn’t. I was reminded how it felt to have no advocate in the world who was more of the devil’s advocate than my advocate.

I was most upset with myself. I allowed a group of people to take away my joy. A few stepped in and advocated for me who knew me. One woman in particular though who weighed in was a woman who lived on the lake where I was abused. She knew the years I spent being abused, the years I spent being ignored, the years I spent being persecuted, and the years that it had affected me. She knew that I had overcome those people only to get this disease and find myself in a vulnerable state. She knew my battles. She knew everything. Even invited me out to her house on that lake incase I ever wanted to come back to that place I had lost EVERYTHING. She said she felt sorry for the man. She may as well have stabbed me repeatedly with a knife. She knew how much her advocating for and jumping on the bandwagon for a man instead of me would hurt me. I felt crushed.

It took one facebook post to take away my victory.

I let that happen.

The only person in this scenario that mattered was me. The only person who had any right to comment or weigh in or give an opinion is my husband. He saw it as he has seen my life unfold and HE was proud of me. Yet, I let all of those others unsolicited words affect me. Why? How can I allow others’ words to hurt me when they aren’t true? I guess old wounds are easily scratched raw again. It reminded me of when I was told that I was a slut and that is why I was molested as an 11 year old.

I looked at the people on that account. Only 2 people had actually ever reached out to me in REAL LIFE. The other 200 were just invaders of my privacy who felt it was ok to say something negative on a day where I felt so empowered.

I deactivated the account again. Obviously. I was sad to not be able to use facebook to share my pictures because I thought mistakenly that I could make a difference by putting something positive for others to enjoy. It was not worth it.

Yesterday, my daughter was ill. I had to drive her to the doctor. I had to then drive to the pharmacy to get medication.

Anyone who has followed my blog, my life, knows that I did not drive for 11 years. They will also know that I have worked my way up to drive a mile to the prairie and visit the farm animals. I have not driven to a doctor’s appointment in over 11 years. I have not been without my scooter. I never go anywhere without my scooter. I am driven there and then get in my scooter. I have not put gas in the car. I drove my daughter to the doctor which was exactly 5.8 miles away. I put gas in the car (a lot has changed in 11 years and it took way too long to figure out the machine!) I only managed 10 dollars worth of gas before my arm got tired. I walked her into the appointment for the first time. I walked her out. I drove to the pharmacy. I walked in. I got her medication. I drove home. I walked in the house. I took a shower. I got in bed. Then I cried for a very very long time. I was so proud of myself. I had no idea my body could do it. I was so afraid. Being in traffic, being around so many people! I am used to being very secluded back here. My little wheelchair walks and my one mile trip to the prairie is all I do. I was bombarded with so many smells and it was very very overwhelming. Then I did not have my scooter. I had no idea how long my legs would make it and if I could even make it home. I did. I cried in my bed for the pain that had set in. I could not move for 7 hours. I couldn’t get up to eat or pee or drink. I couldn’t lift my arms. I still can barely turn my head and it’s been 24 hours. My shins hurt, my toes, fingers, face, every muscle hurts. I feel like I got kicked in the ribs by 10 people. But I did it. I took care of my daughter! Thankfully I don’t have this to put on facebook for someone to take that away from me. No one can take that away from me. No one would fully know what I accomplished. My husband did. I called and told him all of it. And since he knows my capabilities and lack of, he knew what I had done.

I’m still crying in pain. I’m crying in what I realize I did and realize how much I have lost and how I may not be able to do anything like that again. My future scares me.

I was in the shower and I could see every muscle quivering all over my entire body. I saw for the first time the extent, really saw, my leg and how atrophied and deteriorated it is. I kept repeating “Don’t fail me now” from the eminem song, to my legs. Come on legs. Hold me up a little longer.

I feel depressed and defeated now. No one knows me. No one knows but my husband, my life. The ins and outs of being in a scooter and losing your body and then subsequently losing part of your mind to PTSD. It makes me feel incredibly lonely.

It’s funny actually. My own mother was willing to stop wearing perfume, and use unscented laundry detergent for me, and yet she was also willing to walk away upon finding out the extent of the abuse that I shared. It is incredibly isolating to be me. To have only one person know me. All of me. To know, if I lose him, I will have literally nobody.

So I write on my blog, I share my story with others who I feel I can trust and who do deeply care about me. I am aware that half of my views are from those same people willing to gossip from that small town of hell I am from. But the other views and comments are positive from those of you that take the time to go on this journey with me. I appreciate your words. They are the only words I have left.

27 thoughts on “He who knows me.

  1. dont let them win! dont deactive your account. just unfriend those who do that sorta thing. they arent worth it. you are strong. you can do it i believe in you! i am just so sorry you are so depressed. hugs! xo

    Liked by 1 person

  2. Yeah, Facebook, isn’t it funny that people who never react to anything funny or positive suddenly lash out when they feel like it. I am sorry to hear how people reacted on Facebook. But thank you for this post. I am very sorry to have to consider this but I might have been the person to have made that thoughtless and hurtful ‘joke’ too. Out of sheer stupidity, not out of nastiness in my case (i may hope…) So, on behalve of and all other people and I (who sits here with a fright) I am glad that you wrote about this.
    Sounds to me you found a one of a lifetime guy. I am happy for you both. ❤
    xx, Feeling

    Liked by 1 person

  3. I have a comment for the idiots that are mean but it’s rude so I’d better not say it. Lift up your chin special lady, you are worth more than they will ever be! (((hugs))) x


  4. So many people DO suck don’t they? Just as when I read your FB post, I’m sitting here shaking my head. Such insensitivity from the guy at the gardens who said that to you (for one thing) and then to have FB friends to disregard and give you NO validation! Especially the one who knows your history…to her I say…”WT actual hell woman?”

    I could put myself in your place a little when you wrote about how when you drove out into ‘the world’ for the first time in forever. For me it’s the sounds. I am really sound sensitive. If I’d been in your position, the sounds would be really overwhelming for me. Smells get me too but it’s not as bad as what you’re dealing with.

    It’s so weird how a mom will do certain things for you to help, like stop using fragrances. When I had to change what I ate, my mother would ask me what she could make for me, when there were family gatherings. I was reminded of this when I read that section about your mom. But these two women (mothers) are only able to go so far and then the emotional stuff…well they can’t handle it. Why does the love stop there? I don’t understand.

    I missed all those invalidating comments on your FB thread. So dismissive of those who commented like that. I would’ve been really pissed off and hurt too.

    One day after therapy, (months ago now), I was driving home and I swear it never fails, I got a tailgater. This particular time, there was a really old man driving in front of me going like 20 mph. Excruciatingly slow. But I had no choice but to slow down myself. Well the ass in back of me tailgated me. I mean, so close he might as well have climbed in my trunk. On this particular road there was no shoulder. No place to pull over safely. And I was so pissed off about being tailgated. It’s a huge trigger for me. I mean huge.

    Well I put the ‘story’ on FB and got some douche I went to high school with commenting, “I don’t why you would get so angry about that. Just pull over next time.”

    I responded, “Way to validate Ed!”

    I wished I’d said something more though. He always writes about his work life including things that bother him and piss him off. I wish I’d said something to the effect of, “Remember that the next time you want to lament about the assholes at your job.”

    I think I deactivated for a bit after that too. I don’t remember if that correlated or not. I did deactivate for a bit. But I’ve been contemplating unfriending him ever since. If I ever unfriend someone, I also block them so they don’t come up on the side bar as “People you may know.” Nor will I see them in comments of mutual friends.

    I never comment on Ed’s stuff anymore. In fact I don’t even read it. He now has a punchable face to me. It disgusts me when I see his picture.

    With all that being said, I’m really sorry that all those people, and especially the people who know your story, have no empathy for your side of this. And then to use the ‘invisible illnesses’ argument to defend this guy when…um…HELLO! Do they know who’s thread they’re commenting on.

    I’ve gotten the old, “You don’t look sick” comment myself from my own mother after I’d been dx’d with IC and doing research about how to eat and heal myself. (My case is not that severe, but still it’s a stinging remark).

    Using that argument in response to you on this is a complete mind-fuck. It seems a bit like gas lighting. My sister, when I would talk about health and the correlation of food to it, she’d accuse me of pushing my ideas, opinions and even my lifestyle onto her. I wasn’t. I was just having what I thought was a conversation about things I was learning about nutrition. She would get tense as I spoke. I didn’t realize this was happening though until later, when she told me that she thought that.

    Anyway, the point is, that later, she would make similar statements about nutrition to me as I’d said to her and then act like it was an original idea. Like she’d thought of it herself and that I’d never ever even said it. No acknowledgement on her part that I’d said it months before that. Talk about crazy-making. (Hopefully that makes sense as a comparison. Not that they’re the same at all, but just the crazy-making behavior.)

    Something like that can make you question if it’s you that’s wrong. I don’t know if you’ve done this in this scenario but I can tell you I would probably be doing that. I used to be worse about it than I am now.

    In your post though, you don’t sound like you’re doing that, which is good. But therein lies another reason why these people are so wrong to respond with such invalidation.

    Sorry Bethany that you had to go through all that you did these past few days, weeks or whatever it’s been only to have so called friends respond like they did. Not cool.


    • I deleted the comments as they came. At first I replied but it just ended up in a debate and then others were debating on my post like I wasn’t even there. So I deleted it all.
      I think I’m used to the sounds of being out because of being out with my husband but everything became magnified as I didn’t have my scooter and was very hypervigilant about everything.
      Its funny what you said aboutyour mom and making food. Mine would do the same. Why did they have a stop switch on giving a shit though I just don’t know.
      Your point is exactly what I was talking about with facebook. You were upset with a tailgater. You didn’t ask for anyone’s advice on what to do next time. You wanted to just be heard and maybe a nice little “well that guy sounds like a dick” comment would work just fine. Not pull over. Duh. And the thing about seeing them in comments ofyour friends after you unfriend them. That really bothered me. I didn’t realize if you blocked them then you didn’t see any of that. How does anyone even say you don’t look sick. I mean you didn’t ask for a comment and you didn’t expect a comment. If you tell someone you have an illness a come back just should not be you don’t look sick. It’s so invalidating. Who cares what you look like! That isn’t the point!!! Yes, i totally get the comparison it’s the same kind of thing. I’m sorry you were treated like that
      See the thing is I have never said anything before so I never had to question myself if I were wrong or right because I was never able to say a word just beat myself up later for not being able to talk. This time I knew I was right. This guy was an asshole and I’m so glad I was able to say something to him.
      After deleting facebook I realized I don’t really have any real life friends. Not day to day in my life come help me that’s for sure. I have people who are friends who will check on me but we are talking knowing someone for 20 years and that person not even asking if they can help me. I don’t have that. I have kind people like you and some others like you who validate and give kindness and I really do apppreciate that.
      I was just reading your blog. Didn’t get to the video yet but I will

      Liked by 1 person

  5. Hi Bethany,
    My heart reaches out to you as it sounds as if, after all you’ve endured, you’ve experienced a kind of secondary abuse from those whom you thought had your back. Stab you in the back, more like it. Wolves in sheep’s clothing.
    The who climate of FB is not supportive, I’ve found. Unlike here on WP where people are vulnerable in sharing their stories and receive almost nothing but compassionate responses, FB breeds narcissism and a kind of self-righteous, polemical atmosphere, that it’s just not worth it.
    I am amazed at what you were able to do for the sake of your daughter the other day. There’s so much love there, I get teary thinking about it. I hope and pray that you may find some comfort soon, with all of this turmoil, physical and emotional.
    Lastly, you are so blessed to have a truly understanding, soulmate of a husband. I marvel at the strength of you and your husband, just by reading what you have written here, and feel as if I can learn a lot from you both.
    – Amaya


    • You are absolutely right. The climate of facebook is just toxic and not anything like what we are doing here on WordPress by being raw and honest to help others and ourselves and receiving support and validation. I will stay away from those other toxic places and stick to where I feel safe being me and getting support.
      Thankyou for your very kind response to what I have written.


  6. Oh, Bethany. You deserve so much better in life. I have to admit that I dislike social media and spend very little time with it. I’m very happy you have the husband that you do. I admire your courage as you took your daughter to the doctor and the pharmacy after that. My heart broke reading about your physical agony in the aftermath. Thanks for sharing the beauty of your pictures and the pain of your suffering. You are special and no one can take that away from you. Hugs, John.

    Liked by 1 person

  7. I am super inspired by your spirit and finding your voice to speak up to the senseless statement of the insensitive man – more importantly for voicing what is inside you irrespective of who the audience is. The only audience really that matters is you. I’m also super inspired by the love you share with your husband. It sounds like a rare and precious one indeed! I’m sorry the joy and pride you rightly felt were squashed by more senseless and insensitive people. Oh for people seeing beyond themselves! I don’t know what the FB peeps said, but I imagine it was commentary that reflected their own fears and smallness, hence completely unrelated to you and what you experience (albeit targeting their stuff entirely at you – weak). So unfair, so wrong. Thank you for sharing your strength and loveliness with all of us here, and offering such inspiration, Maggie x


    • Thank YOU for your comment and understanding. You have these people pegged for exactly what they are. Small. Unable to see beyond themselves. And don’t really care to. I’ve known people like them my whole life. I just thought I had been rid of them but there are always a few sprinkled in our midst they weeded themselves out and I deactivated that account so I am nolonger free game to target whatever issues they have.
      Thank you for everything you said. It really meant a lot


  8. I’ve left Facebook a couple of years ago and have started to believe it is a vile place. I don’t know you or the place you come from but what I have read so far shows an incredibly strong woman. Don’t let anyone take that away from you! Sending love and light.


    • Thank you. I appreciate that. My experiences with facebook are all negative. I’m glad to be away from it.
      The place where I come from is a small town where people stand up for a child molester and not the child and then pretend nothing happened. It was an awful place.


      • Sadly there are many of these places in this world. 🌼 Thats why it is so important that survivors stand together and support each other. You are lucky to have your husband and a wonderful blog. It is a pleasure to read it. Hope you have a lovely day and weekend!

        Liked by 1 person

  9. I was so proud of you as I read you stood up for yourself and said something to the man about the scooter. That is extremely difficult to do, but you did it! I’m one who blows off comments and insults that are friendly and just ignore them. I KNOW how hard it is to speak up to someone who has made a hurtful statement, especially when you’ve had a lifetime of this abuse. I’m so proud of you.



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