I have always spent WAY too much time on things I do not understand. I remember as a kid having a great deal of trouble with the nursery rhyme, “The Farmer in the Dell”. Why did everyone — have SOMEONE, except for the cheese? Why did the cheese have to stand alone? This bothered me at 6-years-old. I didn’t have “Google” or other search engines to discover the “why”. Siri wasn’t there to tell me (though she is precious little help in my humble opinion). I remember asking my parents (who didn’t know), my grandmother (who explained the cheese wasn’t “living”) and my brother (who smacked me good for such an inane question).

Now if I don’t know something and spend WAY too much time pondering something, I can easily look it up. Take hashtags, for example. I was using hashtags before I knew what hashtags were. I was being ridiculous. (Surprise anyone?) I used them for anything and everything, not fully understanding what they were for. I still use them to be silly sometimes, but there really is a reason to use them. Hashtags make social media (Twitter, WordPress, Facebook, and much more) posts “searchable”. A high school friend of mine, Janet, is currently using one: #wheredoyousummer. Janet knows how to use hashtags correctly. People all over the world can pick up and use the same hashtag, making it possible to search what others are posting about the same topic; that is, where and what you do for summer fun. Here is a great article about hashtags in case you are still in the dark: 10 Reasons Why You Should Use Hashtags and Where

Sometimes I’m Left Pondering

You cannot always look up what you don’t know. This is especially true when one considers the human psyche and the reason some people do what they do. You can google, “Why does my husband leave dirty clothes on the floor?” and you won’t get very far. (Actually, if you Google that, you will find some information which just floors me!). You cannot search why some people respond negatively to you in regards to your disability. “Why is my co-worker a butthead when I explain I cannot hear her over her desk radio, chewing gum like a cow, and tapping foot?”

Friends? You just aren’t going to find the answer to all questions that plague you! Sometimes there are no answers. I’m frequently left wondering why something is the way it is, or why someone behaves as they do. There are no easy answers.

I like to think if I had not developed Meniere’s disease and become “the bionic woman” with my hearing, I would still have patience and understanding for differently-abled people. I like to think my heart was “right” before ever acquiring challenges myself. But… I can’t know that for sure.

I’m sure it is not always easy to be around someone whose favorite response is “huh?” First day of class today for a summer session of Introduction to Psychology, and a Latino student came up and whispered something to me with a slight accent. I took a step closer and asked him to speak up so that I could hear him. I turned my cochlear implant ear towards him. He stepped back, his eyes got big since I encroached on his personal space, and he had trouble talking to me in a louder voice (he is likely soft-spoken to begin with). I understand reactions like this. They do not bother me anymore. Eventually I understood what he was asking, and we got it all “sorted”.

What is tiresome is when you ask someone to repeat themselves, and they do — exactly like they did the first time. (Quietly, mumbling, chewing gum or inhaling a Subway sandwich, etc). By the time I’ve asked for a repeat a second time, often repeating at least what I DID HEAR that go ’round, I have received some cantankerous retorts. I often have to take a deep breath and put my cane down so that I don’t bean someone. It’s frustrating! You are not always going to know why someone reacts the way that they do.

Boundaries

I have readers at Hearing Elmo who often ask me tough questions about the behavior of other people. Why do their loved ones seem so disrespectful at times? Why do people you count on let you down over and over? Why do people in our support system act as if this is all harder on them than it is on you–the person with the acquired disability or chronic illness?

There just aren’t any easy answers. Communication is important, but communication breaks down in the BEST of times. When trying to learn to cope and adjust to an acquired disability or chronic illness, communication is tough. Sometimes, you can write someone off after giving them numerous chances to accept you as you are. You can throw up your hands and #BootToCurb.

More often than not, we have to swallow our frustration and WORK at it. You may need a counselor or mediator even. I know my own acquired disabilities had an effect on much more than me. There was adjustment for both my husband and my children. It is important to remember that when you LOVE someone, what negatively affects them often has an affect on you as well.

Other times, we can distance ourselves from toxic people. Sometimes these may just be “former friends”, but sometimes they can be family. This is especially difficult. Boundaries are important. I have some folks in my life who are unreasonable in their expectations, hateful, and often bring me down (way down). I may not be able to cut them out of my life because we are related, but I can set up boundaries. Cloud and Townsend wrote: “Boundaries: When to say Yes, When to Say No, To Take Control of Your Life”. I highly recommend it. When negative people cross invisible boundaries I have set up for proper and normal human behavior, I can distance myself with a clear conscious if they choose to continue harming me.

If you lay down the ground rules of respectful HUMAN behavior and someone does not hold up their end? Distance yourself. Walk away.

“But I work with this idiot” (#TriesHardToRefrainFromBadWords).

That doesn’t mean you have to share your life with them. Do your job as it requires interacting with them, but don’t feel like you have to invite them to a party, become FaceBook friends with them, or include them in more intimate details of your life. Frankly, these folks are likely horrible to anyone different than they are. Your disabilities or chronic illness aren’t what set them against you. Their own issues have them responding negatively to anyone “different”.

Blog. Just do It

In closing, I wish I could explain to you how therapeutic blogging is. Even if you do not want to start your own blog–many health and advocacy bloggers (like Hearing Elmo) welcome guest writers. It is SO helpful to me to be able to write about what works, what doesn’t, what I’ve learned, and what I’ve forgotten. #LoveToBlog

I think we need an outlet. When burdened with an acquired disability, chronic illness, or special health/mental health challenge, we need an avenue to vent. Writing can help with that. I (as always) welcome guest writers.

Want to start your own blog? Here is a great place to start: Blogging Basics

Have a great week!

Denise Portis

© Personal Hearing Loss Journal