Welcome back dudes! I hope everyone had an amazing week!
I spent this entire week debating on how and where to start my “becoming d/Deaf journey” blog. And when I say debating, I mean sat in front of the computer screen staring at a blank page. I wasn’t sure how to proceed with telling my story. Some people might think that’s a little weird; just start at the beginning right? Well, there is the start of when I was in the hospital and I was told an autoimmune made me d/Deaf, there was the month before when I started having trouble understanding people, the day before the hospital where I was collapsing (my boyfriend at the time thought I was lying 🤦♀️ ), then there was the event decades before where I made a silent wish. So which start do I choose?
When I’m not writing, I’m at the farm working. Farm life is 24/7 so it has been hard to find time to write, but luckily I work alone so I had a lot of time to think…okay in all honesty, I asked the horses where I should start. 😂
We (because yes the horses pitched in 😝 ) decided to start with the hospital visit. But I will rewind in the next blogs so that I can show how exactly the entire going d/Deaf happened. You’ll get the whole experience reverse order. Simply because my mind, as I explained before, has NEVER followed a linear pattern. And I just think reverse order is cool, so that’s what we are going with. At the end of the day, I have a feeling my story can impact someone who is experiencing a similar occurrence OR maybe just someone who needs to learn that being different isn’t a bad thing OR maybe inspire someone to learn sign language for a d/Deaf or hard of hearing friend. Either way, this blog will teach.
I remember like it was yesterday. I was sitting in an uncomfortable plastic chair in the Emergency Room mulling over the fact that my then boyfriend’s mother had to tell him not the let me drive to the hospital alone after I repeatedly collapsed. I twirled my fingers, a habit I’d carried with me since childhood, and glanced at my phone. I know I made a face…I’ve always been extremely expressionate even before I became d/Deaf. I’d been waiting an hour already. My eyes shifted to the others waiting, wondering if they had something similar happen to them. As I later found out, they hadn’t. Very few people had. I was one of a kind…literally. 300 people in the United States have been diagnosed with SUSAC Syndrome, but that’s rushing ahead.
I stood up, catching the attention of my then boyfriend. He asked me what I was doing and a muttered that I was going to the bathroom. I was restless. I’m not good at remaining still. I went to the bathroom and vividly remember staring at my reflection in the mirror wondering what had happened to me. I can’t recall the exact moment I had changed, but in the year and a half since I’d moved to Pittsburgh, my personality had diminished. A shadow of its former self. Young me would be so sad. It honestly breaks my heart thinking about her. I had such a bright personality, such big dreams, such an huge imagination. What happened to her?
I sat back down in the Emergency Room with thoughts of childhood me and waited until a burly male nurse beckoned me into the back. And then that’s where I spent the rest of the night. In a curtain drawn room as doctor after doctor came to talk to me. Nurses rushed me to MRI’s, Cat Scans, X-rays, even an eye exam.
Then came time for the Spinal Tap…let me tell you, if you’ve never gotten one, thank the Lord because there are no words to how much those suck. Around this time, my face began to sag and I lost all ability to move my right side. The doctor’s thought I was having a stroke. I was put into a wheelchair to move from test to test.
Eventually I was taken to a single room, had an IV drawn and steroids flushed into my body. My medical expertise ranges from House MD to Grey’s Anatomy so don’t quote me on this, but I feel like steroids are the go-to for when Doctor’s have no idea what is wrong with you. I asked the nurses why I needed steroids. They told me I’d lost over 95 percent of my hearing in the span of a month and from what they could tell, my vision was starting to fail also and they wanted to halt the progression. I’m legally considered Deaf/Blind.
Finally the nurses left and just me and my then boyfriend remained. At this point, everything was so quiet it was almost peaceful despite the escalating annoyance of still not being told what was wrong with me. My phone vibrated. I looked down. My best friend, whom I’d just accepted a job at the same place she was a Manager at, texted in response to me informing her I wouldn’t be coming into work and I didn’t know when I would be able to again. She couldn’t care less that I wasn’t working, only wanted to know how I was and when she could come by. Me being me, rejected that offer wanting to be alone. People didn’t need to see a bed ridden hospital patient. Of course a few minutes later my then boyfriend informed me he had called my parents.
I was severely pissed. I’m not good at admitting when I need help or being around people when I’m struggling. Not to mention the looks I would get from them. Pity for one. I cannot stand pity. And concern. I hate when people are concerned for me. Regardless my parents immediately dropped everything to make the 8 hour drive from North Carolina to Pittsburgh PA.
I slept a lot but I was constantly tired. This lasted for awhile even after I left the hospital. Nurses came to check on me every few hours. Sometimes to draw blood, sometimes to check my IV, sometimes just to see if I needed anything. Then I opened my eyes to the looks I had done my best to avoid…pity laced with concern. My parents stared down at me, probably praying this wasn’t the last time they’d see me. I didn’t know what to say so I just stared back.
The Doctors informed my parents…I’ll stop here for a second. I have always disliked when people didn’t direct their words to me especially if the subject was about me, but now that I’m d/Deaf people ALWAYS talk to the hearing person with me or just say ‘never mind I’ll tell you later’ or ‘it doesn’t matter’. DO NOT BE THAT PERSON. The d/Deaf don’t deserve to be ignored or dismissed just because we can’t hear. We don’t dismiss you when you don’t understand sign language.
Anyway, they told my parents that I had MS (Multiple Sclerosis), and I would have gone home with that diagnosis - as many others had - had one doctor not questioned it. His reasoning behind his questions, MS doesn’t normally present with hearing loss right off the bat. The lesions in my brain resembled MS but because of my hearing, he wanted to consider another autoimmune: SUSAC Syndrome which is a cousin autoimmune to MS. They appear very similar on an MRI.
From that moment on, Doctors began debating the correct way to proceed. You see, since only 300 people in the United States (at the time) had been diagnosed with SUSAC, every drug was considered experimental. I was put on Rituxen (a chemotherapy drug) and steroids.
I’ll stop my story here as I have now been diagnosed and “labeled” d/Deaf. Next Monday we will reverse the time to when I first began having trouble understanding verbal language. Thats a fun story especially because I was on vacation at the beach 🙄 After that, I’ll explain my silent wish. And from there I’ll continue on with my d/Deaf life and how it affected my everyday.
Thank you so much for reading! Have an amazing week dudes!
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