I think one of the hardest things for me with having multiple sclerosis and deafness is how much my personal life and plans for my life have changed. First, let’s do the deafness. When I tell people I’m sorry I cannot hear you, can you speak to me on my phone, and it will tell me what you said. Deer in headlights. I find that humorous and very annoying at the same time. Then I must explain. Double annoying. I just have no patience anymore. It is 2026, Deaf people have been around since the beginning. Just stop! Educate yourself, we exist in your hearing world. The other side of being Deaf from being able to hear for most of my life, the silence. It’s deafening, ironic huh? Music is no longer heard, hearing outdoor noises, people talking, listening to tv and movies dialogue, do not talk to hearing friends much, and just speaking with medical staff without the use of interpreter, my sister, or the voice app. Losing my hearing is another mark against MS, it is the reason I no longer hear. With the deafness, the tendinitis, the door knocking sounds, the buzzing, crashing of waves is a constant 24/7. Some days it is hard to rest and sleep. It is not a silent world for me in some ways.
This one is a harder one for me. I think people do not think about how their words or actions affect someone. Sometimes it is a double wham when people say stuff that just makes me get angry, shake my head, or think cannot believe someone like you says stupid inconsiderate stuff. Comparing themselves or someone in their family to your chronic issues. When I’m asked how are you doing? I explain and they reply, oh yeah, my husband, wife, or child went through this health issue. We are not the same, please shut up. I don’t care, you asked about me. I am struggling every damn day; I have issues all the time. Just stop with the comparisons. My situation is kind of permanent; it is hard for me to express concern for you now especially when you ask me how I am doing. I know this sounds callous and mean, but honestly, I don’t care.
When I am by myself every day or few days at a time, I am constantly aware of my body and surroundings like being able to transfer to my power wheelchair from my recliner chair, transferring to the toilet to go to the bathroom, cooking, going outside to check the mail or just to get fresh air, bad weather i.e. power outages, exacerbations, usage of my hands, severe migraines, fatigue (sleeping a lot), pain, is a specific place wheelchair accessible, and more (think of losing function of your dominant hand and legs doing daily stuff), we are DEFINITLY not the same.
Talking with friends becomes awkward because they do not think about how their words affect feelings. When I am alone for a few days and then you saying to me, oh that’s not too bad; just blows me away, or say, oh yeah, I have that too. REALLY!?!? The last one I will never forget that someone saying to me while I was walking with my walker – why can’t you climb the stairs? Do not get me started on having a relationship, the crap.
Do you have any idea what can happen? Do you honestly know what goes through my mind? Do you really understand at all? The struggle is real. Think before you speak! Ugh!
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