When I first got my electric wheelchair it was pretty exciting. My only thoughts were, YES I can now go around the block, and leave when I want to , and walk the dogs. I didn’t think at all about how I would look or how others would perceive me. I would nolonger be trapped in my own house or yard. I could finally venture out when I wanted to. I particualry loved my first “fit” when if I had a car I would have stormed off but somehow slamming the door while driving away in my wheelchair just did not have the same affect. But I could leave. I laughed afterwards at my door slamming and thinking of how un-dramatic it was zipping away in a wheelchair. A wheelchair meant freedom. I could visit friends in the neighborhood. I could go out at night and look up at the stars. I could be independent.
My husband never treated me any different. He never made one comment about the wheelchair. I remember distinctly our first walk and hoping he wouldn’t act uncomfortable or awkward because then I would feel different and I just wanted to go for a walk with my husband. He held my hand. He didn’t act differently at all. I loved him for that. He was like my own personal warrior that made me feel like this was not something I would have to fight alone. This disease could make me weak but he would be give the strength I needed to battle through all the obstacles that would come.
When I got my scooter that the MDA bought for me I was even more thrilled. Now I had something that could go into the car. I could go to dinner, go shopping, go to appointments, and not be dependent. Let me tell you being pushed in a wheelchair is no fun. Having the control to go where I want to when I want to in that scooter was just magical. But with that came other people. I was out now in a scooter and EVERYONE noticed. I was just me. I didn’t get it. The staring was just relentless and the comments and questions were ever coming. They invaded my normalcy with reminding me that I was not normal to them.
One day I was in the mall and I saw myself in a department store mirror. I was pretty shocked. I looked so small in my scooter. I didn’t look like the me that I felt inside. The scooter betrayed the image of me. It was more the scooter was me and I wasn’t me. I saw it now. People just saw the scooter. I so valued my husband’s ability to never look at me differently at that moment because even I looked at myself differently. But I moved past that pretty quickly. INfact in that moment I was already past it. That scooter meant freedom and I really didn’t care how I looked in it. I fixed that in my head very quickly. I wish others could get past the shock value of the moment just as quickly and just go back to treating me as they did. It was hard feeling like a warrior when I looked like a small fragile being and treated like one too.
Knowing I was diagnosed with a muscle disease and maneuvering through everything that that meant physically while having a child to take care of was very exhausting. I had to learn balance. Every action that I did with my body resulted in a reaction that was often negative if I wasn’t careful. I learned my limitations quickly.
I went from being a professional athlete to having to use a wheelchair if walking required any real length walking or exertion. My husband never batted an eye. Neither did my daughter. Nor did her friends. She was 10 at the time and she and her friends thought of my scooter as a “ride” when they were tired. It was just part of who I was to them and part of that was pretty fun.
I look back at that time and really appreciate the people who just rolled with it. My friend D at the time was one of those people. She would come over and just pick up the broom and start sweeping. If she used my bathroom, she’d often come out and find a rag with cleaner and start cleaning it. She never said a word. Just did it. Never made me feel embarrassed or uncomfortable with the fact that, yes, my floor really did need sweeping. She would just sweep it, then sit down with me like that was just common place for her to do that. That was truly priceless.
Other friends like A would know that she needed to park her car to the right side of the driveway if I was wheel chairing over for dinner or I wouldn’t be able to get past her car. She never made me feel guilty that she was doing all the work in the kitchen because she knew my arms couldn’t do it.
I was thinking about these things last night after talking to my closest friend Patti. She has known me most of my life. I called her because I wanted to talk to her about something and didn’t know how to bring it up. She just said, ” Ok what is it?” She knew that I needed to talk. She knew me. She gets me. She always has. I could call and tell her I robbed a bank and I’m pretty sure she would say, “Well are you doing ok? Do you want to talk about it? Is there anything I can do?” I talked to her about how it felt to have someone say they didn’t like to see me in a wheelchair. She said that in reality no one wants to see me in a wheelchair but it can be worded in a way that makes it not about them and more about me. All in the wording. Instead of, ” I really don’t want to see you in a wheelchair “, ” It must be hard some days to not be able to do what you want to do.” More about me. Less about them. Even though it is an acknowledgment of how hard it is infact for them to see me not like I was. Patti has always had a way of sorting out my issues with me and making them clearer. She also knows how to ask the right questions, give the right compassion, and clarifies and validates my feelings.
I’ve had some super supportive people in my life. They realize that I am still me, my abilities just aren’t the same. And I have had some awful people in my life. But don’t we all. One “friend” told me that she felt like I just wasn’t the same sweet Bethany anymore. That I was angry and didn’t see the good in the world anymore. I’ve thought long about those comments. That was such a difficult time for me. I was feeling very abandoned by some family and friends, because they were infact abandoning me. And I was angry for the first time in my life about the betrayals that had happened to me. I did the only thing that an “angry” person could do. I called her a bitch! She wasn’t really a bitch. She was just a self centered selfish girl who was not being a good friend. She had no concept of being a good friend. She was actually part of a pivotal moment in my life. I called my friend Patti after that, like I usually do when any thing happens in my life. And she told me that even if I were angry, who cares! Did I not have the right to be angry? Didnt I have the right to not fit into the mold that others put me in of always being sweet? Infact, Patti said that I was still sweet, I was just feeling angry. I realized then that I needed people in my life that allowed me to be. People that would come in my house and sweep if it needed to be swept. People in my life that instead of judging my emotions, thought to ask if I was ok!
Not many people actually ask how I am. Not many people ask me how I feel emotionally. Infact it has rarely been done in the ten years I have had this disease. You’ve got your doers, your ignores, your ignorant commenters, but rarely the truly connected. I don’t think I’ve ever been asked how it feels to have to use a wheelchair. I know I’ve never been asked how it feels to not waterski anymore. I’ve never been asked how it feels to watch people running and know I cannot. People feel comfortable asking me if I can pop a wheelie in my scooter and if I am a good female driver. People don’t feel comfortable asking me how it feels when someone makes that kind of insensitive comment. People don’t feel comfortable asking me how I feel period.
I love when my buddy TJ calls me. I can hear him in the distance on the answering machine, ” YO B!” He makes me feel normal. He reminds me how it feels to just be me. We talk on the phone like no time has passed since I was 18. He asks me how I feel. And typically he can tell by just the tone of my voice what my reply will be because he is a good listener. I love good listeners and I love people that make me still feel normal!
I’ve been thinking about my muscle disease today. I’ve been thinking about the things that people say and do not say, do and do not do, all in relation to my wheelchair and scooter. About how people don’t ask the hard questions, how they become superficial, and how no one even really knows how I feel about having this disease.
It is not so different than the abuse and everything surrounding the abuse. Not different at all really. No one asked what really needed to be asked. Are you OK? How do you really feel right now? Is there anything I can do? I’ve told my friend Patti every single detail. She always knows what to say. I’ve told my husband every single detail. He always knows what to say. But so many have not. It is hard to feel like a warrior when people treat you like you are a victim. It is hard to feel like a warrior when other people blame you for being abused.
When you have been abused one of the HUGE emotions attached to that is feeling isolated AND feeling different. Not feeling normal.
But it is OTHER people that made me feel that way. Just like OTHER people made me feel different by treating me differently when seeing me in my scooter.
My nana said it best when I was a young girl and she found out I had been abused and she simply said, ” I am so sorry he did that to you. Are you OK Bethy?”
Am I OK. Some days I am not ok. Some days I am angry at this disease. I am angry that I overcame abuse only to find myself struggling again in a completely different way. But my neighbor told me a story just yesterday. It was of a mother she knew with cancer. That mother had a child who was fighting cancer as well. A mother and child fighting cancer. And I thought, we all have our battles. We all have our struggles and challenges. I have read blogs and hear personal stories of other people fighting illnesses and abuse only to have family not support them. So many young girls have told me they have been abused by their fathers only to have their mothers support their father instead of them. So many feel isolated because of their circumstances and this is something in our society that must change.
We need kindness. We need listeners. We need to feel connected. We need to feel normal. More people should have asked me if I was OK way back when I was being abused and came forward with the truth. Had they asked, and had I felt not so alone, perhaps I would not have attempted suicide. I can only speculate really to how I would have felt had I had people fighting with me and for me after I had been abused.
Back when I was a teenager and trying to trudge through life after abuse, I was driving home from my buddy TJs house when I drove off the road and into a tree. I remember his face when he saw me. I felt so guilty. He thought he shouldn’t have let me drive home so late. He and everyone else thought I fell asleep at the wheel. No one knew until this year that I intentionally planned on dying that night. I was wearing his lettermans jacket. The firefighter cut it off of me. I loved that Jacket. I felt so bad his jacket was torn in half. That’s all I was thinking. I don’t know why that night on the way home I had decided I nolonger want to live. I can’t remember anything that was on my mind at all except feeling bad his jacket had to be cut. I remember speeding up the car and heading straight for a tree. But I did not succeed and attempted suicide many more times after that. I find it tragic that I felt so alone and no one knew. Because no one asked me. Looking back now I know it was the fact that I felt like no one really knew what I was feeling. No one ever asked. Not REALLY asked. Just like no one asks me now. How do I feel that my daughter has been sick for 3 years now? Not many people ask. How does it feel to not be able to drive, or buy what you want at the grocery store, or just leave whenever you want? Not many people ask. How did it feel then? How does it feel now? No one asks. Which I find bizarre really. Because these are things I ask other people. I find it second nature to bypass the superficial and ask how someone is really feeling.
So I write this to bring awareness. To bring to a conscious level of thought, the value of truly being present for someone. It could have prevented me from attempting suicide as a teenager. It could have made me feel like even after all the abuse, I could still be talked to like a normal person again. Even now, with my muscle disease, it would be nice, just every once in awhile, to not be wondering what someone else is thinking of my scooter, and have someone ASK If am doing ok. It is a simple question. A short question. A life changing question. Because what if I am not OK. And no one knows. Because no one ever asked.
what I needed after abuse, and what I needed after I was using wheelchairs are the same… It is the same need a person has after losing a loved one, after a divorce, having a chronic illness, going through chemotherapy, or after the loss of a child. We all need to know that there are people out there who genuinely care how we feel as we are going through our struggle, and pain. We need our family and friends to ask us how we are really feeling and be present in that moment to care about how we respond. Because when we are asked how we really are, we are nolonger fighting alone. We have fought these battles alone long enough. It is time we see OURSELVES as warriors. And in our time of need we need others to be our warriors for us. Ask someone how they really are feeling, and then…
Be someone’s warrior.