I wrote this post last week sometime when I was tired, in pain, and experienced a couple of issues that I have seen with my Deaf peeps. AND I am tired of things that I’m confronted with everyday the “it’s about me generation” in terms of disease such as Multiple Sclerosis that comes with many symptoms and they can be similar to other MS‘rs or can be something entirely different. I put this post in draft mode because I felt I was mean and too harsh. Then I thought oh no, this is you not me.

I think my biggest struggle when people become defensive and hurt when I don’t show a pleasant and cheerful sunny face, especially when it’s been a rough week or night. It is even more annoying to me when the “Multiple Sclerosis” posts and comments from people are just, ugh! When I have to constantly explain or reassure someone it is not you, my anger and extreme annoyance creeps in.

I have been struggling with migraines, nausea and lack of sleep because I sleep during the day to rid the headaches and nausea. Then at night, I’m awake dealing with electric shocks now which has a name: Lhermitte’s Sign and lots of nerve and muscle pain in back, hands and feet. I do not want to constantly reassure someone in a smiley, singy-songy voice hi! It’s not you, please don’t be offended. It’s just the Multiple Sclerosis. But in reality, I want to say f@&k you and kiss my ass. Grow up, deal with it, you go hide somewhere away from me and STFU.

This behavior sets the feeling of “hatard”. I don’t want to be this person. I have to constantly ask God to help me be understanding. Be understanding because someone “thinks” that they know what it is like because their own experience with a family member or friend is the same way. SO NOT!!!! My biggest pet peeve is when comparing me to someone you know or even with yourself on the pain, mood, and attitude.

Multiple Sclerosis has made me Deaf. Please do not misunderstand me. I am a person who has a few Deaf relatives, my parents are Deaf, but I was hearing at one time in my life, then diagnosed hard of hearing, and now I am 100% Deaf. Yes, I am fortunate I know sign language, I’m grateful to have this beautiful language instilled in me. I understand now what my parents have gone through in their life with hearing family and friends. For me, it is a new thing, more profound than being hard of hearing. I miss hearing. It is an everyday struggle because I see things and know what it sounds like, but cannot hear it anymore.

I am living in a place with other people. It is a new process I am trying to adapt to. There is one thing I will not feel guilty or responsible for making others comfortable when I am around. I will not ease their being uncomfortable or reassure the mindset of what they are insecure with. If you as an individual have been exposed to a “Deaf person” or “Deaf culture”, then it is your responsibility to learn about our culture. We have endured more crap from the “hearing” society than you have. I’m tired of trying to ease the “you’re talking about me” in that hurt attacking, threatening, storming off, and stomping around attitude and mindset. Be proactive and find ways to communicate. Technology today is amazing, there are NO excuses. Again, get uncomfortable, STFU, then educate yourself.

This post is about how I feel, not to smooth over hurt feelings because again, it is you not me reading into things incorrectly and unfairly. Until you have 100% experienced Multiple Sclerosis and Deafness, be mindful and empathetic, or you can just keep on continuing to hurt yourself and be ignorant.