This post took longer than I’d like to admit to complete. Not because I forgot what happened. No. I can’t. It’s engrained in my mind. I will remember every struggle, every scream, every second of confusion, every person who mocked me, every person who was supportive, and every person who wasn’t. The memory we have is incredible and sadly, the bad things we will carry with us forever. But I guess its so prominent in our minds so that we don’t make the same mistake twice.
I may not get my point across the way I want to or hope to, but it was a very dark time for me where I trusted and needed someone who wasn’t there for me. The solitude I felt still grips my heart. I will try to explain as best I can…
Everyone has a favorite place to be. A place that gives them a warm glowing feeling in the pit of their chest. A place that no matter how dark and dreary life gets, it’ll still put a smile on their face. A sense of calm. A sense of peace. Some people find that in church. I’m a believer, but the institution of “church” never did it for me. The rows of pews or chairs, the centerstage with lights focused on one person, the watchful eyes of everyone as though looking for a mistake. I know that isn’t all churches and maybe I’m just too paranoid, but I never felt God in church. It was too stale. Too boring. And God isn’t boring. God is alive. And what is alive? Nature.
In nature, thats where I feel and see God. The basis of our world. The part of Earth, human beings can’t make ugly. They can burn it, build over it, and try to hide it from us, but they can’t take a flower and make it ugly. God is there. Specifically for me, at the beach. The beach is my absolute favorite place to be. The salty breeze blowing in from the ocean depths, the cries of gulls as they stalk French Fries, the waves rolling over the shore, basking in the sun on a sandy beach. It’s my happy place. The place where I feel God in the core of my being. Or I should say, it was my favorite place.
In June of 2016 my ex boyfriend and I were supposed to drive to Virginia Beach. I loved that beach. I spent college summers there. A friend was from there and when she offered our group a free place to stay, we jumped on that. I’d been there before college though. I’d spent my High School graduation celebration there with my two best friends. When I say I love this beach, that is a gross understatement. I don’t know if there is a word to describe how I feel when I think of that place. King Neptune’s Statue, Ripley’s Believe It Or Not, the roller coasters, the French Fries, the ice cream, the funnel cakes, the boardwalk…I could go on and on. I loved EVERYTHING there. Or I did…
That year, it became a bleak spot in my memory. As usually, my ex and I started the trip with an argument. I didn’t want to drive the whole way. I wanted to split the drive into two parts. I personally don’t feel comfortable driving in cities so I asked for him to take over once we got close. But he said no. That was usually the case. I’m sure there are lots of girls who like to drive, but when this is your second year dating and I was the main driver and he was the main passenger, I needed a break. I didn’t get it. Thinking back, I can’t actually remember a time where I wasn’t in the drivers seat.
I don’t want to make my ex out to be a bad person. We weren’t compatible and it takes two to start a fight; but this trip, where I was understanding less and less by the minute (no lie), I could have used a supportive shoulder to help me. Instead, I got screamed at the whole drive because I could’t understand what he was saying…as if I had any control over what my body could and couldn’t hear.
At this point in my d/Deaf journey, I could hear some REALLY LOUD pitches that may or may not register into words but most of those sounds meant absolutely nothing to me. I could understand the tone though and nearly the entire drive was a yelling, angry one. I cried most of the way down to my favorite place. A place I wanted to share with my significant other. Angry tears, sad tears, frustrated tears. You name any emotion and I probably cried those tears. I even began to think it was my fault. That I was doing something wrong. I tried so hard to understand, but couldn’t.
We got to Virginia Beach early morning, 2am early morning. I mentioned how I hated driving in cities…I hate driving at night even more. I have horrible depth perception but now I know it was also because parts of my vision were completely gone. Glasses don’t help. It’s like someone snapped their fingers and poof, my sight in certain places vanished.
The human body is amazing though. I had no idea until I took an eye exam I couldn’t see parts I thought I was seeing. My mind filled in the blank spots 🤯 Like wow, the body is mind blowing. It’s good to pause and appreciate this organ we are living in, even if there are parts of it we don’t like or appreciate. It is capable of wondrous things.
I digress. Back to my beach trip. We are now at Virginia Beach and can’t check in until 11am. It is dark and we are tired. Might I add I brought my fur son with us. His name is Doctorious Tobias Maximus. Doc or Doctor for short 😂 He is half Husky and half German Shepherd. He doesn’t do well in the heat but now we are in Virginia Beach at 2am with no hotel room. My then boyfriend wanted to sleep in the car. That wouldn’t have been a problem for me, except my Husky overheats real fast.
While my ex was sleeping, I spent from 2 am to 8 am walking Doc and making sure he was as cool as possible. I was exhausted, frustrated, and just wanted to go home. Eventually 11am rolled around and we were able to check in. The front desk people were super nice. They were accommodating and worked with me so that we could communicate i.e. wrote things out for me, typed on their phones for me. Not once did they get frustrated or angry.
I understand if you have never interacted with a d/Deaf or a hard of hearing person, you don’t know the correct way to proceed. Ask that person what their preferred way to communicate is: reading lips, typing on your phone, etc. I can read lips, but it is exhausting and you miss a lot. It’s 20-40 percent accurate. A lot of speech comes from the back of the throat which you can’t see. Sign language is 100% accessible and you don’t get drained. It will always be my number one choice. But I am aware most hearing people were never taught ASL. So I appreciate those who are now learning for me. So much love to those who do 🤍
Now I have to explain something about SUSAC Syndrome. There are three things that hit when SUSAC is active.
First, Personality Change/Cognitive Issues/Memory Loss. My sister visited Pittsburgh, PA a month before I ended up in the hospital. Right before this trip, in fact. She went back to North Carolina and told my parents “Chelsea has changed, I don’t recognize her.” Of course a month later I was in the hospital and my family learned I had an autoimmune and the personality change was basically my body trying to warn people around me. Again, human bodies are beyond amazing.
Second, hearing loss within a very short period. Check for that also.
Third, vision loss. I hit the trifecta jackpot and experienced all three.
I explain this because during this beach trip we went to stores on the boardwalk. In one of those stores, I put my purse down. We left. A few stores down I realized I didn’t have my purse. That spurred another fight, but what I want you to see is that I was forgetting things. I even forgot simple things you wouldn’t consider. Like how to fill the car up with gas, how to pay using credit card, my email address, my phone number, etc. It was a terrifying time and I felt extremely alone. I imagine I got taste of what people with Alzheimer’s disease feel like. It’s horrifying knowing you’re forgetting things and unable to stop it.
Luckily, my personality, memory and cognitive abilities returned. My hearing and vision did not. They never will. And no amount of “technology” can “fix” their departure. I will never hear again and the spots of my vision that are gone, are gone forever. Do I regret this? Not for a second! I have a new language, a new culture, and a new perspective on the world.
However, SUSAC not only took my hearing and vision, it managed to take a place that I considered apart of my soul. Twisting it from freedom and beauty and God to horror and fear and solitude. I haven’t been back and I don’t know if I ever will.
I want to say, everything I write is true but it isn’t the whole story. Too much has happened for me to share on a blog. But if you are experiencing any of these things, please see your Doctor and do not let them deny you or tell you that you have MS. You don’t. You’re a lucky soul who has a cousin of MS and you may feel very scared and very alone right now. I’m not denying the pain and horror MS causes, but there are slight differences that make a huge difference medicine wise.
Anyway dudes, that was my very horrifying beach trip and I NEVER thought I’d ever say that about Virginia Beach. If you have any questions, feel free to email me or comment. I’ll get back as soon as I can…remember I live without wifi and work 24/7 on a farm so be patient with me 😂 Have a great day!!! Till next Monday!
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