One of my biggest struggles over the years is asking someone for help. I went from helping others or taking care of someone to being the person needing help. It is extremely uncomfortable for me to ask or accept help from someone. This post is something I have thought about based on some things that have happened recently, comments that were made, and the last thing was from watching a movie last night called “You’re Not You”. The movie was about a gifted pianist who was diagnosed with ALS. Amyotrophic lateral sclerosis (ALS) is a neurogenerative weakness that leads to movement problems, eating, swallowing, and breathing issues/ This disease is in no comparison to Multiple Sclerosis (MS) as there are different symptoms. The symptoms may be similar in areas like hand dexterity issues, walking, bladder problems, etcetera. What hit me was how the bond between the woman and her assistant (note the movie did not use the word “caretaker”) develops on many things that are needed throughout the movie such as bathing, showering, cooking, going to the bathroom and how people treat someone with a disease.

Certain things happened recently that led up to this post. I try to be a decent human being despite my disease and strong personality. I have noticed that some people do not treat me nicely. This ranges from public and medical services to certain individuals I thought were understanding. When arrangements are made to have something, I need done and a time is set to expect the person to show up and they do not, royally pisses me off. Especially after texting back and forth many times the day before trying to establish a schedule because knowing myself and my body, I am not able to sit in my wheelchair all day waiting for someone to show. I am usually up by 4:30 or 5:30 am and by the time 10 or 11 am rolls around, I have been in my wheelchair for 6 to 7 hrs. I have already done things like dishes, making coffee, breakfast, cleaning up, journal, checking emails, and by then I am in massive pain in my spine and butt from sitting in my wheelchair. Sure, I can lay down and rest, but it is often I do not get up again until bathroom needs or its dinner time. When someone shows up 2-3 hours late from the set time or not at all, things get ugly fast.

So, when I must wait for someone because they are late or not respect what was planned. I get upset, especially after explaining many times what this disease does to my body and what I am capable of tolerating in a brief time span. When someone is confronted about their lack of respect and they turn around and make it as if I am at fault and I misunderstood especially having proof, this does not sit well with me. Then having to tolerate the abusive cursing, narcissistic attitude, and text blaming just makes matters much worse. Of course, I am going to bite back, and I will bite hard! I do not have to take this type of crap from anyone. I endured this narcissistic abuse for 5 years in Columbus where I used to live, and much of my life growing up with an abusive family.

I do try extremely hard to honor my commitments with professional and personal help, especially with my disease that is often unpredictable. When I watched the movie, the character never once apologized for her behavior. She did feel guilty because the life she had with her husband did not turn out the way it was supposed to. When a college student was hired as her assistant, I loved how the character did not let the assistant demean her and offered no explanations to the decisions she made. It was not about the assistant or the caretaker, it was about her disease and the things she required to live in comfort and being happy. This is something I have only seen in my close friend who helps me all the time. Yes, we do get in tiny discomforting rifts, or I may not agree with her, but we have always respected each other. She understands and she knows. She has never made me uncomfortable or felt bad. She honors the schedules we create and if something pops up I am not made to wait hours for a reply. This is the way it should be. It is not about your friend’s feelings or friendship, or even professional’s feelings, it is about me. I must live with the disease, they do not.

Today’s situation has exhausted me and caused mobility and pain problems. Does this person understand that? No, because the texts have been very narcissistic and blaming. The attitude and messages show me we are not compatible and need to part ways. It’s sad because no one likes to do that, but my mental health and comfort is more important than the “poor me” attitude that is in the texts. This was the same thing I saw in the movie. It woke me up. I need to advocate for me, it’s not about them. If a person accepts to offer to help, then they should do so without any expectation. They have already been told, explained, shown, and been made a part of my plan. There should be no misunderstanding from anyone once the plans are set. I should not feel guilty because a plan or schedule was not followed or honored.

Prior to today’s massive blowup, I was told that I am picky. There are certain ways I need things set in my home. Wheelchair routes to the kitchen, bathroom and living room need to be free and clear of any obstacles. Often when people come over or help, things are put in the way of where I need to go in my wheelchair. When someone helps me with cleaning, putting dishes away, or sit in my chair lift recliner I rest in; I will explain, please put things this way because it is easier for me to grab, or please clean things this way because I would prefer that, please be careful of my remote for my chair lift – it is taped together and cannot afford to have the chair controls replaced at the moment, please use my detergent for laundry because my sense of smell is very sensitive and I suffer from migraines from strong detergent smells, my reasons are dismissed and waved away and I am told I am picky and mean. Again, it is not about you, it is about me. I must live with this disease. My mobility is affected, my hands are affected. My brain has scars. It is not something I can control or help. I learned this in the movie. I am struggling with being firm and strong and knowing what is right for me, and people often do not understand this.

I highly recommend watching this movie “You’re Not You”, it will give the person watching it a better sense of what it is like for a person that depends on someone for help.