Hearing Loss, Masks & Ableism

Thursday I was craving some fries from McDonalds, which is one of my safe foods due to my gastroparesis. So I placed a mobile order, I did curbside pick up, but it wasn’t letting me check in for pickup. So I went inside. The cashier was talking to me and I couldn’t understand/hear her. So I told her. Then the manager started talking to me. I repeated I can’t hear them. She started again. I yelled “I’m partially deaf, I can’t understand you.” Then she laughs! The manager laughed! There were several guys in the waiting for their food, one stepped up to help me. When I walked away, she laughed again! I was so angry and embarrassed, I was almost crying. 

Masks have long been a challenge for those that are hearing impaired. Many have experienced horrible situations in being unable to communicate. This is NOT ok. This is stressful and honestly traumatizing. I have 30% hearing loss in my left ear and 40% in my right. I’m exhausted sometimes from straining to hear what’s being said to me by others.

Now you may think, what’s the big deal. Well the big deal is, for those in the hearing impaired community, reading lips is imperative to communicate. With lips covered, they can’t effectively communicate. Many won’t move their masks down, so their lips could be read. Many won’t write down on a pad of paper for the HI person, many make no effort to accommodate to provide effective communication. What is even more mind blowing is how often this is happening at doctors offices and hospitals. This happens way too often at doctors offices. I have told them, upon checking in for an appointment, that I am hard of hearing. I will not hear my name if called softly, or on the other side of the waiting room. Frustratingly it STILL happens! I had one appointment last year with an Ortho, I couldn’t tell you what was said. He wore two masks, and didn’t speak clearly. Again, this was AFTER telling him I’m hearing impaired.

 The sad reality is, this is happening at an alarming frequency. We, in the hearing impaired community have lost valuable, necessary ways to communicate. This has left us reeling. This has left us experiencing frustrating, even embarrassing situations. The amount of times we’re ridiculed, ignored or absolutely no effort is put forth to communicate in a way in which we need is astounding. There’s countless videos on Tiktok of this happening, countless posts on Facebook detailing the same thing. 

“The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus — the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.”

Helen Keller

In all honesty, it’s disheartening.This is honestly ableist. Having experienced this over and over is emotionally draining. Today’s experience was completely unacceptable. It should NEVER have happened. It SHOULDN’T be happening to anyone! Struggling to hear so I can communicate, is that really acceptable? Is that really where we are? This is NOT about politics. This is about a community being left in the lurch with struggling to communicate due to masks. We need to find a way that doesn’t leave an entire community struggling to communicate. If you see someone struggling, please help them. Offer assistance. Work to find a way to communicate with them. Whether it’s typing on your phone, or writing it down. Be kind. Choose kindness and compassion.

And the Results are in..Kinda

results

Ahh..Welcome back everyone! It’s another sunny day here, though a bit Chilly! So last time we were awaiting results from the CT scan…and boy did we get them!!! But before I get to them…like that..leaving you in suspense??!!

First things first.. this week my dad has had off, and he’s taken me to appointments, and Christmas shopping (much to my dismay), yes i’ve been the Grinch this year.  I’ve just not been in the Jolly mood. But I’m slowly getting there. We’ve gotten some good presents for my son! He’s going to have a great Christmas! One thing I’m excited to give him is an old Musical Keyboard my sister found for me. I know some may be shocked that’s it’s used, but you know what? He’s 4! So I’m excited to give it to him. He has one at my mom’s and always plays it, so I’m thinking he’ll love this gift! I also got him some Duck Dynasty pajamas, because I’m just that awesome! 🙂  Ok ok. Enough gushing about the Christmas presents. My mom had knee surgery yesterday, and made it through alright. I’m so happy! I’ve been trying to stay active, but the pain isn’t really allowing it. The pain in my head, neck, back, hips, legs, hands is just becoming so much .  To find out half of your Femur head is missing…wow that’s a lot to take in!!

Alright my lovely readers, now i’ll lift the suspense!  Below are the results:

CT-Hip:  Mixed Sclerotic Lesion in Left Iliac Wing measuring 2.8 x 2.1 x 1.8 cm in greatest dimension. Appears Benign, possibly enchondroma.

CT-Lumbar: Mild Multilevel loss of intevertebral disc height.  L2-3 broad based posterior disc bulge more prominent at the neural foraminal with mild neural foraminal stenosis; L3-4 mild circumferential disc bulge more prominent at the neural foraminal with mild bilateral neural foraminal stenosis; L4-5 mild circumferential disc bulge more prominent at the neural foraminal with mild canal stenosis; L5-S1  mild circumferential disc bulge more prominent at the neural foraminal with mild bilateral neural foraminal stenosis.   Non obstruction 2mm calculus in midpole of right kidney. Additional adjacent 1mm calculus cannot be excluded. Punctate calculus is also seen in midpole of left kidney. Mild Sclerosis at sacroiliac joints, limited visualization of iliac bones.

Bone Scan Whole Body-  The Thoracic-lumbar junction has a mild convexity to the left. There is  increased tracer activity to the  right side of skull.

So… I had my CT scan done December 9th, and was sent for a Bone scan which was done December 16th. Tuesday morning my ortho’s office calls me to come in. So I go in, wondering what’s wrong. When my doctor comes in, she’s talking to me, and says. “have you ever had surgery to your head, or a head injury.” I tell her no. That’s i’ve been complaining for months to my neuro of these weird headaches and pain. She takes my films and puts in on the screen and shows me right there in my brain is something, and they don’t know what it is. She said due to what the bone scan looks for and my symptoms I need a neurosurgeon, and sooner rather than later. I ask her point blank what she thinks.. She says the words I feared the most. She doesn’t believe it to be cancer because it’s not showing up that way, but she said it could be a tumor that the tracers are picking up. So, she referred me to University of Miami Neurosurgery, as it’s one of the Top neurosurgery departments and it’s an hour or so away. Problem is, I lose my health insurance Midnight Dec.31. So I sit here and wonder..If the neuro had followed up on my complaints, or given a damn would this have been found? If it is a tumor, can anything be done??? As it is now, I’m losing my hearing, and my eyesight its worsening as is my speech, and other things. So.. How was none of this found by the renowned Cleveland Clinic??? Simple, they didn’t give a shit! I should be angry, but I’m not. Anger gets me know where. I’ve been set on this path for a reason, and I’ll continue on it. With my same strength and courage, with the love and support of my family and friends. This journey is far from over. Giving up isn’t an option.

Never-give-up-hope-..