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.