My ears are broken! Wtf!?!

In addition to losing control of my hands and feet, I experienced a strange change in my hearing. On my way to the ambulance, I heard a loud pop, and suddenly, it felt as if someone had turned down the volume on life itself. The progression of symptoms went like this: first, I could no longer stand up; then my hearing became distorted; and finally, I lost the use of my hands. I didn’t even know what to think.

When I was in the emergency room, my hearing was erratic. Sometimes I could hear, and other times everything was muffled and unclear. By the time I was admitted to a regular room, I was exhausted. They moved me from the stretcher to the bed, and I gratefully fell asleep. When I woke up, I could barely hear anything.

I wasn’t completely deaf; I could hear sounds, but I couldn’t make out what they were. When I finally saw an ENT doctor, he confirmed that my hearing was seriously compromised—I was lacking clarity. He was the first person who really helped me understand and articulate what I was experiencing. People around me would make noise, and I’d respond, but I had no idea what that noise was. Throughout my hospitalization, some people doubted whether I could hear or thought I was playing some sort of game. It was incredibly frustrating because I desperately wanted to hear clearly. Until I saw the ENT doctor, I didn’t even have the vocabulary to explain what was happening.

I’ve since learned that the brain damage I suffered affected my feet first, then my hearing, and finally my hands. I have other random symptoms, but these are the big three. They tell me that as my brain heals, my hearing should return to normal. At first, I was skeptical, but now that I’ve been hospitalized for over a year, I can recognize some improvement.

As time has passed, I’ve regained a fair amount of my hearing. I got hearing aids, but they didn’t help my brain unscramble the sounds I was hearing. I could hear noises better, but I still couldn’t understand what those noises were, so I put the hearing aids aside. The audiologist told me that I had a choice, and she and her boss agreed with the ENT doctor: if I continued to recover in other areas, like with my hands and feet, I would likely regain my hearing as well.

It broke my heart not to be able to hear. I was trying to be a champion in physical therapy—putting one foot in front of the other, doing my hand exercises, trying to learn how to write again—and I’m still working through all of that. But I often sit in my wheelchair, thinking how beautiful it would be to listen to some of my favorite music, work on my plants, or do my stretches with music playing in the background. For me, music is life.

My hearing has gone through so many changes over the past year. At first, I couldn’t hear much at all, not even my own voice. My family and the staff had to use a whiteboard to communicate, and we had conversations that way. I got really good at reading lips, along with the little bit that I could hear. Then I started to hear music a little, but it’s really wacky the way I hear it now. It’s like something is missing from the songs. For guitar-heavy music, which is my favorite, I can’t hear the lead guitar—I can hear the rhythm section pretty well, though. There are certain singers whose voices I can’t hear at all; my hearing seems to cut out at a certain tone or pitch, whatever it’s called. The same goes for hearing people talk. Some folks have voices with a rich tone that I can hear clearly, but others with softer voices are harder for me to understand, even with my lip-reading skills.

Right now, my hearing has adjusted again, and now it sounds like everyone is talking too close to a microphone. A couple of months ago, people sounded like they were coming through an AM radio station. Now I need people to back away from the microphone and not talk so loudly, lol! Even listening to myself dictate this blog post is getting on my nerves because it sounds like I’m on a microphone to myself. It’s really wild.

Which brings me to thinking about brain damage and how the brain heals. The current theory is that I had some condition that caused brain damage, leading to the loss of use in my hands, legs, feet, and hearing. I still have muscle strength and can hear some things, but with my hands and feet, I lack sensation, and with my hearing, I lack clarity. I imagine that the signals in my brain are misfiring or not connecting properly yet. It’s very frustrating to be a year into this and not have healed further. It’s also sad to think that this might be it—the pinnacle of my healing. I’m trying to make the best of it, but it’s going to take me a while to accept that this might be all there is.

What happened?

I want to delve deeper into what happened and what led me to where I am today. It started in late 2022. I wasn’t feeling well, and I believe much of it was due to my nerves. At the time, I had been diagnosed with agoraphobia for over five years. In the summer of 2022, I was told I would have to move from the hotel suite I was living in because they were closing it to build a new one across the street. 

I knew I would be moving sometime in November, and as it got closer, my nerves really started to kick in. I couldn’t eat most of the week, and when I did, it wasn’t healthy. Even though the move was just across the street, it became a significant ordeal in my mind. I finished moving by the end of November, but by then, my nerves were completely frazzled, and my feet were in immense pain. I thought I had developed plantar fasciitis again, as the pain was unrelenting.

During my first full week in the new hotel, I rested, trying to feel better, but the pain only worsened. About a week and a half into December, I was admitted to the hospital. I could walk a bit, but it was extremely painful. I went into rehab for about a month and left on a walker. I had home healthcare services for a couple of months, which ended around mid-March. Despite some improvement, I still had pain and was using the walker. The most alarming issue was my inability to eat properly and the increasing difficulty in leaving my room.

Sometime in April, I lost my appetite entirely and started drinking only Gatorade and water. I tried to consume Ensure for calories, but I was constantly tired and spent most of my time in bed. My nerves were on edge, leading to frequent panic attacks—two or three major ones a day, accompanied by dry heaving. One day, the shaking, hyperventilating, and dry heaving stopped, and I began to vomit several times a day, sometimes painfully. I couldn’t keep anything down, not even water. I tried making Gatorade popsicles to suck on ice chips, but nothing stopped the vomiting.

I would sit on my Rollator in the bathroom and sometimes fall asleep because it was too difficult to get out of bed. I started falling a lot, even with the walker. I was exhausted and dehydrated. Around mid-May, I began experiencing severe vertigo, making it hard to see straight, walk, or do anything. I was falling more frequently and staying on the ground longer, but I could still get up.

Eventually, I fell and tried to get back up, but my midsection lost all strength. My arms and hands were still strong, so I kept trying to pull myself up on the Rollator, but I was so tired. I used my elbows to low crawl toward the end table, grabbed a pillow and blanket, and had a trash bag beside me to vomit into. I was prepared to die, and part of me wished I had. I was really disappointed when I woke up because it meant I needed to go to the hospital again, which was the last thing I wanted.

From that point forward, a whole awful chain of events unfolded. I knew there was wickedness in this world, but I never knew personally how far or deep that wickedness could go—with a smile on its face. The medical abuse I encountered, I wouldn’t wish on anyone. To be in such a vulnerable position where you cannot use your hands or feet, hallucinate, and have lost most of your hearing, and for a group of people to find joy in your situation, is terrifying.

As this blog goes on, I will talk about it in more depth. I don’t know if I’m emotionally ready to pick it all apart yet. I am in trauma therapy and have had many conversations with family members and staff about that time. Yet, I want to talk about it here so that maybe even if just one person comes across these words and feels understood, they know someone hears them and is praying for them. There were some nurses and nursing aides who gave me little love breadcrumbs to hold onto because they saw how confused and in pain I was. And there was nothing, absolutely nothing, I could do about it.

Looking back, sometimes I wonder what I could’ve done differently. Given that I had lost control of my bodily functions, there wasn’t anything else I could do. I could only focus on moving forward.

Back again.

It’s been a challenging year. Last May, I was admitted to the hospital after losing the use of my legs. For about a month before that, I had been severely ill with vertigo and nonstop vomiting. Despite my efforts to stay hydrated with Gatorade and Ensure, the vertigo worsened. In the days leading up to my hospitalization, I struggled to get to the bathroom or the refrigerator without falling. I could barely sleep because lying down made everything spin. Finally, I fell and couldn't get back up. Exhausted and dehydrated, I felt like giving up. My core strength was gone, and it was impossible to lift myself using my walker. I managed to pull myself to the end table, grabbed a pillow, and covered myself with a blanket before finally falling asleep.

I don't know how long I was out, but when I woke up, I was still on the floor. I called maintenance, and they contacted 911. When the ambulance arrived, I was embarrassed. I had vomited everything I had tried to drink and had soiled myself. Management helped me pack a small hospital bag and waited with me until the ambulance came. Despite my embarrassment, I had no choice but to let them put me on the stretcher. During the elevator ride, I heard a loud popping sound, and everything seemed muted. I couldn't understand what people were saying or hear myself clearly. I wasn't completely deaf, but I couldn't make out any sounds.

In the emergency room, I underwent numerous tests: MRIs, CAT scans, ultrasounds, bloodwork, and urinalysis. Despite all this, they couldn't find anything except severe dehydration and my inability to move my legs. I was eventually moved to a room, and with IV fluids and anti-nausea medication, I gratefully fell asleep. That was May 18th, 2023. The next time I was fully conscious was at the end of July 2023. Between May and July, I had been in a delirium and lost the use of my hands and arms up to my elbows. My hearing deteriorated further, and I couldn't do anything for myself.

Despite my severe neurological issues, I wasn't able to see a neurologist until July 2024. I've spent time in three different hospitals and have been in a long-term care facility at the VA for a year. Throughout this time, I received no diagnosis. No one could explain why I lost the use of my hands and feet, why my hearing was impaired, or why I had gone into delirium. Despite seeing various doctors, it was unclear that I was dealing with a neurological issue.

At the VA Medical Center, I started physical therapy. Having served in the United States Army, I've done extensive physical training, but learning to walk and use my hands again has been the most challenging experience of my life. I am in constant pain, and the neuropathy is strange, leaving me with little to no sensation in my hands and feet. Physical therapy has helped me learn to sit up, stand using a walker, and transition to my wheelchair. I work on standing longer and walking further. For my hands, I do grip exercises, use resistance bands, and practice handwriting. It's been a long road, and I still have a long way to go.

Last month, I finally saw a neurologist who diagnosed me with sensory motor neuropathy and scheduled a muscle response test. Although I'm not looking forward to the painful test, I am eager to see the results. When I asked my physical therapist about my recovery timeline, he said it's hard to predict—I could make a full recovery, or this might be the best it gets. However, the neurologist's preliminary exam gave me hope that I could make a full recovery, even if I still have some limitations.

So here I am, back at the blog after another hospitalization. I'm not sure how much I'll post, as life had become routine after my last hospitalization. But now, with a recovery process that isn't linear, I have more milestones to document. Writing in this blog helps me recover cognitive abilities and track my progress, setbacks, and plateaus. I'm still awaiting a definitive diagnosis, but the neurologist suspects a demyelinating disease like Guillain-Barré syndrome. After the EMG, we should have a clearer understanding. Until then, I'll keep pushing forward.

Perhaps The Advice You Got Was Backwards

This post is really a piggyback off of the last one, a little same, a little different. But sometimes the advice you're getting is backwards for your particular situation.

In the last post, I was talking about how sometimes I'll see posts, videos, clips, etc and think that it's not very good advice. Well in the process of me analyzing myself, I realized that sometimes the message is just backwards.

So take for instance the idea "Keep moving, don't ever stop! You'll never get to where you're going if you quit now!" Now for some folks this may be the motivation they need to keep pushing through whatever obstacle they're dealing with. It almost sounds like something you would hear a trainer say to their client in the gym, "Keep pushing!" And it's usually what the client wants and needs to hear, he's paying for someone to push him in that way.

Now, at times that kind of in your face, "tough love" type of "advice" is TOXIC! Especially when dealing with chronic conditions or traumatic situations. Those of us who don't know how we're going to feel one day to the next do not need to keep going, we need to stop and rest at times. I'm not talking about giving up. On the contrary. I'm talking about being smart and taking the time to learn yourself and your body. Find out how much you can do, do that and then rest. If all you do is get up, wash up and go lay back down, then you're good. Don't let those who have no idea what you're dealing with, make you feel bad for not doing more. Because the last thing you want to do is push yourself into a burnout or another flare. It's not worth it. 

In any case, it was just an observation of mine. These days, along with looking at just about everything online with skepticism, I take a little time to contemplate. What is this saying? What does it mean for me; or how am I interpreting it? Do I even care? There is so much information, misinformation and disinformation out in these internet streets that it's hard to tell. Protect your mind and your heart from those sneaky little devils that can become full blown demons if you don't keep your wits about you.

Take it easy!

Sometimes The Message Isn't For You

There are times when I'll run into a post on Instagram or Twitter and think, "That's really not good advice". I sometimes even question some of the speakers that I listen to the most. Most recently, I found myself at odds with something someone else said, and it really started to get on my nerves. 

Everywhere I look, everyone is talking about "Just let it go!". "Stop thinking about it!" "Gotta move on!" "Can't dwell in the past!" Now generally these sentiments are correct, it's important to not stay stuck mentally or emotionally. 

However, I'm moving through therapy right now and there's a lot that's coming up for me. It's important to look at what has happened, so I can understand how it's affecting me now. As I've been processing trauma, some of it very old - I realized that it wasn't like I was consciously holding on to the past. Quite the opposite! I was a run away ~ cutting off people and situations as soon as things started to get too complicated. When I'm serious about a person or situation, I can get intense and things can start getting messy. I have a history of not knowing what exactly to do with my feelings, so once I start feeling those intense emotions, I back off. 

Working out some of this stuff is difficult because, I'll talk about it for an hour in therapy, but then I've got a week of dealing with it on my own. I came to understand that it felt like the trauma was holding on to me, rather than me clinging to it. I've been trying to run away from it. The minute I could, I moved out of the house. Literally, the morning I graduated from high school, I was gone. Then after many years of running away from looking at what I was running from - it finally caught up with me. Now, I need sit with it, talk about it, learn from it - and then move on. 

So FOR ME, at this time in my life, it's important to go back and look at certain things. And hearing people just throwing out platitudes, got really irritating to me. So then I had to look at THAT and wonder, why does this bother me so much right now? I normally wouldn't think twice about it.

It was then I realized, that the message wasn't for me at the time. Possibly very helpful for those who needed to hear it, but it wasn't the encouragement I needed. But I did start paying attention. Sometimes I'll be scrolling and see or hear messages that completely contradict each other, one right after the other. Then I'll cruise through the comments and see what's going on there. People are so often hell bent on having their point of view validated that they will get into it with some other argumentative troll. I can say that sometimes it's very entertaining to read their back and forths, but after awhile, it's just gets tiring and really boring.

For anyone working through tough personal content, it's important to be discerning about what you allow to influence you. There are people with a ton of negative energy who need to share it with anyone who is willing to engage. Some podcasters deliberately ramp up the negativity in order to boost likes and comments - hoping to go viral. They may not even believe so deeply in what they're talking about, but because they've been able to get the audience up in arms, carrying on in the comments, they've accomplished their goal. 

If you're challenged with chronic illness, chronic pain or moving through trauma and triggers ~ perhaps it would be good advice to let some things go. Like unfollowing accounts and people that aren't serving you. If your desire is to unload some stress, that might be a good place to start. And if you happen to run across a message that you don't agree with, let that shit go too. As one of my good Sergeants used to say "If it don't apply, let it fly"

All the best! 

Is it REALLY Inspiration Porn or are you just a Hater?

I don't understand y'all ??

I joined Twitter in August 2018 in order to comment, bitch and moan about my favorite TV shows - which all happened to be on the ID Channel (shout out to all #IDAddicts!) I wanted an escape from the life that I was dealing with. It was therapeutic and a form of escapism to fuss about these shows.

Fast forward to November 2018 and I'm an inpatient, dealing with some really hard things. I didn't tweet much because, well there was no ID channel in the hospital and I thought, who in the world wanted to hear about the trauma, pain, doctors appointments, therapy, sleepless night, chronic pain, chronic illness and all around hard time that I was having.

When I was released almost six months later, I found out about #DisabilityTwitter and I was glad to find a tribe of people who were dealing with similar, if not the same challenges that I was. Accessibility issues, inconsiderate doctors, doctors who weren't even listening, doctors who wrote disrespectful notes in your chart because they didn't believe what you were saying, and family members who just didn't get it.

As an aside, a few years ago, I joined a Facebook group that was using slang that I didn't understand. So in the middle of this 30+ comment thread, I ask the question "Oh what does this mean?" Nobody answered. No one replied, they jumped over my comment as if I wasn't there.

Fast forward to couple weeks ago, I ask, again, this time on a disabled person's tweet what their definition of "Inspiration Porn" was. I didn't know it was a "thing" that the internet community knew about. And again I was ignored and THEN subtweeted, as if he didn't have the balls to just answer my question or at least say "Google it"

The first experience was from Abled/NTs who ignored, the second from a Disabled person who also ignored. I see you both the same. At least with Abled/NT folks, I'm not surprised when they don't understand my lack of social understanding. But I am disappointed by disabled people who want to carry themselves as so called activists and advocates who don't take the time out to answer an innocent question by someone who truly didn't understand. Y'all are no better than the Ableds/NTs who treat us as less than or who dismiss us because we don't have the same level of functioning that you do. SHAME ON YOU! I don't like you and I have unfollowed all of you.

The biggest problem I have with this whole "inspiration porn" idea is that y'all have taken the whole thing COMPLETELY out of context. WATCH THE VIDEO! Listen to what she says. She's saying that she's not here for y'all making a big deal out of disabled people doing regular things, but yes we should celebrate the accomplishments. She says, "I want to live in a world where we value genuine achievement for disabled people." I'll save you some time it's at the 8:52 mark.

I've seen the most hateful comments by disabled people about disabled people in the past month. The young man on America's Got Talent, Kodi Lee - OMG! When he opened his mouth to sing, I cried. Genuine talent, skill and ability. I wasn't paying attention to anything but his talent, and his beautiful voice. He received the Golden Buzzer. And instead of the Disabled Community congratulating him they held him up as a an example of INSPIRATION PORN. Comments were varied but mostly consisted of "Yeah, he's talented but y'all want to use him as inspiration porn and we're not here for it!" A bit of a compliment with a large side of shade and hateration.

In regards to Ali Stroker  making history as the first Tony award winning actress in a wheelchair, I woke up to disabled people, once again saying "Omg stop it! Stop using disabled people as inspiration!"  What are you even talking about, Ali said, HERSELF, "This award is for every kid watching tonight who has a disability, who has a limitation or a challenge, who has been waiting to see themselves represented in this arena," she said. "You are."

WTF!! I don't understand y'all. When Stella Young talked about inspiration porn, she was talking about Ableds/NTs recognizing us for just doing normal things, like living.  But she did want us to celebrate the genuine, outstanding achievements of those of us who are doing extraordinary things even given the challenges we must to overcome. So y'all can miss me with all this negativity. I'm here for ALL the people doing ALL the things they have the ability to do!  And PLEASE, shine bright like a light as you do it! 💜💜💜

BTW:  I AM DISABLED!