Family, Memories, Music, Writing

Writing and Music Memories

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Hi there! I was on a weekly roll there, posting stories and then…. hard stop. Sorry about that. I got stuck. To be honest, writing about old stories was getting a little, well… old. And not much has happened in the present that seems exciting enough to write about. My daily journals consist of a lot of mundane recaps and daily goals such as: laundry, groceries, nap, read, clean, etc. SUPER boring. But I still think about writing. All. The. Time. Because I am a writer. It’s who I am. I love writing. Always have. Probably always will. I just haven’t been writing anything here on the blog because I haven’t had anything I felt anyone would be interested in.

But awhile ago I stumbled on an old blog of mine (I’ve been blogging since 2003 on various platforms) and it was a lot of silly nonsense. I wrote because I enjoyed it, not because anyone was interested in it. And so I would love to get back to that. The not caring. Just writing because I enjoy it.

So I decided I want to share here a new genre of music I’ve come to love. Now, I have loved Bob Marley since I first heard him in high school, but that’s as far as I delved into reggae. However, this past summer my family and I took a cruise, stopping one day in Jamaica. Lounging in a pool of sapphire blue atop a lush green mountain overlooking the Caribbean Sea was extremely magical, but what I really fell in love with was the music. There was this energetic, positive, vibrant music blasting everywhere. And it makes my heart flutter when I hear it and I can’t help but sway and move to the rhythms. So several weeks back as I was trying to choose some music to get me through another session of folding laundry, I was reminded of Jamaica and searched for a reggae station. Y’all, it immediately brought me back to last summer and I couldn’t stop smiling. Or dancing! It makes housework so much more fun. Every one of you should try it. Really. Jot that down on your to do list. Then let me know what you think. I’ll wait…

Cochlear implant, Deafness, Faith, Health, Hearing Loss, Low vision, Memories, Multiple Sclerosis, Stories, Visually Impaired

The Mayo Clinic

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If you’ve never been to the Mayo Clinic, as I had never been, you might have been just as awe struck as I was. It felt like a theme park for sick people. We had been anxiously awaiting this visit since it was first mentioned by the doctors when I was at my sickest. We felt like our options had been exhausted, and that this was our best hope for some answers. 

We were scheduled to go in late January, at the height of winter storm season in Michigan. We chose to drive because it was much cheaper than flying, and Mike was perfectly comfortable driving the ten hour drive from Michigan to Minnesota. In addition, we didn’t know how long we would be there, because they don’t tell you that. They can estimate, but this is where the fascination for me came into play. They only schedule that first day of appointments. They wait until you are there, until they’ve met with you and run preliminary tests, before they schedule the next round of appointments on the following day. Appointments and procedures with real professionals, scheduled on the fly! They literally take it one. Day. At. A. Time. Everything is handled in this enormous complex with tunnels (so I hear, I never actually noticed any, but that’s not surprising given my state of mind at the time and my poor vision). It’s an incredibly well-oiled machine and I was so impressed, but I don’t ever plan on going back. 

We left on a snowy Monday. The worst of the weather was in Michigan, it got progressively better as we drove through Indiana, and by the time we were in Illinois it was smooth sailing. There wasn’t much traffic through Wisconsin and after ten hours on the road, we arrived in Minnesota to a balmy negative 12 degrees Fahrenheit. It was very cold and a little windy but at least the sun was shining. We checked into our hotel and settled in to rest for our first day of appointments on Tuesday.

On Tuesday our first appointment at the clinic wasn’t until the afternoon, so we took advantage of the extra time and ran some errands. Got the oil changed on the truck, bought some necessary supplies for the week, and had lunch. Then we took the hotel shuttle to the clinic. Very handy. Our first doctor had a ponytail and reminded us both of the tall guy from Penn & Teller, though at the time we couldn’t remember which was which (it was Penn). This doctor asked all sorts of questions and did some basic reflex/sensory testing. He thought all signs pointed to vasculitis, but he needed to do more testing and gather more prior medical records. This whole time Mike was typing everything for me on his laptop, so that I could answer the questions the doctor was asking. We left knowing they wanted an MRI, blood tests, and possibly a plasmapheresis, so we understood we might be there for longer than a week. That was it for the first day, surprisingly, but I was confident we were in good hands.

Wednesday we were up early so I could have blood tests and several eye exams. They put drops in my eyes and took photos inside and out. It wasn’t Glamour Shots but it showed them what they needed to see. We thought we were done for the day but then we got a call from the doctor to come back that afternoon to discuss the results of his research on MRIs and MS. I don’t remember any details of these discussions. What I remember is sitting there, in silence, feeling dazed and overwhelmed.

Thursday I had a very early appointment for an MRI. This MRI was arguably the longest and loudest one I had had to date. Not that I could hear it, because even with my hearing loss they gave me ear plugs, but I could feel the vibrations from the noise. I told the technician afterward that my kids would love to have a picture of the bulldozer that ran over me. I also had an appointment with an ENT in the afternoon. I remember it well. We walked into the waiting room and a woman quickly took me back to the testing area, telling my husband to stay and fill out some paperwork. I told them I needed him with me but they insisted I would be fine. I wasn’t fine. The woman was trying to talk to me, and she was writing things down with a regular pen, which I couldn’t see. At this point I had been having people write for me with sharpie pens, because nothing else was dark enough. I just cried and said, “Can you please just get my husband?” They brought him back and conducted a few hearing tests. The speech recognition tests were impossible for me and I cried some more. The third test was in a separate room. This one was nice because all I had to do was sit with electrodes stuck to my head and wait. It was after this test that they were able to tell me what was happening with my hearing. I simply had a bad connection between my ears and my brain, and cochlear implants would likely work very well for me. This news gave me a lot of hope.

Later that day I met with the doctor again (ponytail Penn) to hear his conclusion about my vision. His determination was that it was permanent. Irreversible. There was nothing they could do to repair the damage to my optic nerves. Mike and I left his office and stood, stunned, in the lobby. I was devastated. I remember resting in my husband’s arms, just sobbing uncontrollably. A woman who had been at the front desk every day that week walked up to us, offering me a box of tissues and an invitation to join her family for dinner. Since we were leaving the next day and I was not exactly in the mood for being around people, we declined. However, she offered to be praying for us, and that really encouraged me. We believe she was Muslim and hoped our God would honor her prayers. 

 I left that day talking of guide dogs and reading Braille but Mike told me to stop. I was getting way ahead of myself, and we would deal with all that if we needed to, but right now we didn’t need to. We had two good pieces of news. One, the doctor had recommended a plasmapheresis when we got home, which they believed would stop any further damage from happening to my optic nerves. And two, I was a perfect candidate for cochlear implants. So, there were things to be hopeful about.

And that was our final consultation! We were driving home the next day. Everyone at Mayo Clinic was extremely helpful and kind. I had hoped for better answers by the end of the week, but I was grateful to learn that I was not dying and that there were steps I could take going forward.

Deafness, Deep thoughts, Family, Friends, Hearing Loss, Miracles do happen, Multiple Sclerosis, Prayer, Stories, Tinnitus, Trauma, Visually Impaired

Trigger Warning: Suicide

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Doctors never did figure out why I had been sleeping so much. They tested for all sorts of things, but came up short. They suspected Susac’s Syndrome, which at the time I thought was fatal, so I’m glad that turned up negative. I’ve had a couple fluorescein angiograms to take pictures of the blood vessels in my eyes, but both times they showed that everything was normal. To this day, I’m still a medical mystery. 

After sleeping a couple months of my life away, I started to wake up a bit more to what was going on. I was still very deaf and still could not see well, and still had no answers and no hope. The reality of it all was starting to set in. I was now, ironically, having trouble falling asleep at night. The tinnitus would get so loud. I remember the ringing sounded a lot like chanting monks, which would normally be a comfort to me, but at four in the morning it was a nuisance. I brought this issue up to Dr. Hong at a follow up visit and he prescribed me Xanax to help me sleep. It worked wonders. I was able to get proper rest at night and was miraculously still able to wake up in the mornings to help get the kids ready for school. 

I want to convey my level of desperation at this point in time without being overly dramatic. Mike and the kids had left me home alone for an evening because I had seemed to be doing so well, but that turned out to not be the case. I was feeling scared and beat down and I couldn’t see any way out of my situation. I was unable to communicate effectively with everyone I cared about. I felt utterly ALONE. I was at the end of my rope, and wanting to let go. I was feeling so desperate for a way out that I seriously considered swallowing the whole bottle of Xanax. Even more frightening than the hearing and vision loss was the thought that I wanted to check out of life permanently. I reached out to my girlfriends, hoping and praying that one of them could come over and save me from myself. My friend Tracy was the first to respond and she rushed over to the house. She prayed with me and hugged me and reminded me that I was not alone in this struggle. She left that night with the bottle of Xanax so I wouldn’t be tempted again.

As awful as it was, that night was a turning point for me. I had to stop retreating into myself. I needed to reach out, both to God and to the friends and family He had put in my life. After my family returned home that night and we put the kids to bed, I shared with my husband what had happened. I could see from his face that he was both shocked and sad, but he was glad I told him and he reassured me that we were in this together, and that he and the kids needed me. We hugged for a long time and he let me cry on his shoulder. It was good to be reminded that he was there for me because, while we didn’t know it yet, we had an important trip coming up at the end of the month to the Mayo Clinic. I’ll be sharing more about that in the next installment of Adventures with Mel 😉

Deafness, Faith, Hearing Loss, Music, Stories

Losing Music

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Friends and family who know me know that I have always had a deep love for music. Music is what comforts me, inspires me, brings me joy. Music is my Happy Place. Not being able to hear music was a heartbreaking loss for me. However, in between the tinnitus and the silence, there was a song stuck in my head. What was so miraculous is that it wasn’t a well known song, or one I even remembered singing. This song, with lyrics inspired by Psalm 40, became my mantra. I sang it to myself, in my head mostly, but often when left alone I would hum it softly or belt it out in the shower. The lyrics were so perfect for what I was going through that I considered it my theme song. 

Jesus, Lover of My Soul

Jesus, lover of my soul
Jesus, I will never let you go
You’ve taken me from the miry clay
Set my feet upon the rock
And now I know
I love you
I need you
Though my world may fall I’ll never let you go
My savior
My closest friend
I will worship you until the very end

Daily Snippets

Introducing Mel

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I did a thing last week. I decided I don’t want to be called Mindy anymore. This obviously requires a name change here on the blog because, well, I’m not actually “still Mindy”. I’m still ME, but with a different nickname.

Mel is actually closer to my given name of Melinda. I believe Mel suits me better. It’s a name my husband has been using for as long as he’s known me. And I happen to love it.

To be honest, I’ve never wanted to be called Mindy. I had never been successful at changing it, despite many attempts over the course of my life. This year, I’ve reached a point in my life where I am learning to ask for what I want, and more importantly, figuring out what that even is. This year has been one of great inner transformation for me, and I felt like a name change was a good way to reflect that transformation. I’m asking people to call me Mel from now on.

The new title of the blog is Meant to be Mel, and I’ve changed the url to reflect that, but I set up a redirect for stillmindy.com and will leave that up for awhile until that domain expires. Now I just have to train myself to stop answering to Mindy. Old habits die hard!

Deafness, Disability, Faith, Funny story, Hearing Loss, Multiple Sclerosis, Stories, Visually Impaired

Fear and getting lost in my own home

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This is another story that took place in late 2013 when I was still very new to vision loss and hearing loss. I have quite a few stories packed away, and plan to bring some out here on the blog, once a week or so. This one is quite funny to think about in retrospect but at the time it felt quite terrifying…

Our kids were gone to Grandma’s for the weekend (my mother-in-law) and I woke up in the middle of the night to use the bathroom. For some reason I used the one in the hallway, rather than the master bathroom. I’m not sure why, and it doesn’t really matter, only that this wouldn’t have happened otherwise.

Remember now that I can’t see well, I’m completely deaf, and all the lights are off so it’s pitch dark. I made it to the bathroom without issue, but when I turned off the bathroom light and stepped into the hallway I was rather disoriented. I knew enough to turn to the right, having lived in this house for fifteen years, but then I kept walking forward into my room. Or what I thought was my room. When I didn’t find my bed, I panicked. Legitimate, full on panic. I was reaching around trying to discern where I was but I had no idea. I was turning and flailing expecting to find our closet, a bed. a dresser, anything that would register familiar.

And then I started screaming for my husband. “Mike, Mike! Help! I don’t know where I am! MIKE! I couldn’t hear myself, or any response from him, of course, so I was just hoping I was screaming loud enough to wake him, and then I would wait a minute for him to come to me. When he didn’t come, I would start screaming again, to be sure he would know where to find me.

Did I mention this was an 1100 square foot ranch with three bedrooms? Not an escape room or corn maze. Not rocket science.

So this screaming and waiting went on for several more minutes, maybe 10 or 15, until I decided it wasn’t working and I was just going to have to sleep right there on the floor, wherever that was. So I sat down in defeat. That’s when I felt the rug, and I realized then by the texture that it was the race car rug in my son’s room. Right next door to mine. I was so relieved I didn’t even bother laughing at myself. I’ve had plenty of time to do that since. I just got up, felt around for the doorway I had just come through, and found my way to my bedroom and safely into my bed. I laid a hand gently on my husband’s chest, wondering why he hadn’t come to my aid. I could feel the vibrations; he was snoring. He hadn’t even heard me screaming. He slept right through it. I didn’t tell him about the incident until five years later. He wasn’t even sorry, can you believe that?

This journey I’ve been on since 2013, adjusting to life with disabilities, learning how to be me with limited vision and deafness, has taught me so many things, but one of the biggest lessons I’ve learned is that God isn’t always (almost never, if you ask me) going to tell you His plans. He may be keeping you in the dark about all the details and sometimes you just have to sit and wait until He shows you where to go, one grueling step at a time. And no matter how lost you feel, you might just find you’ve been in the right place all along.

Deafness, Disability, Food, Friends, Hearing Loss, Holidays, Kids, Low vision, Miracles do happen, Multiple Sclerosis, Partial Blindness, Stories, Visually Impaired

Wake up, Mindy

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A fascinating part of this story of my plunge into disability is that for almost a full two months I was sleeping close to twenty hours a day. That seems to fascinate the people who hear about it after the fact. For the friends and family who lived it, it was terrifying. And for me, well, I don’t remember much so you could say it was sort of a blur. 

I’m told a lot of things happened. There were times I was sleeping in bed or on the couch. Other times I was falling asleep at the dinner table. One time I was actually falling asleep while walking through Office Max with a friend. At least, that’s what I was told. I sort of wish I had that on video. 

I know I spent a lot of time in the hospital for monitoring and testing. I remember getting a spinal tap, a CAT scan, and numerous middle of the night blood draws. There was one particular night I woke up to half of my extended family sitting around the room with me. My aunt and uncle from Georgia, my cousin from Grand Haven, and perhaps my grandma and grandpa as well. These were all people who were following the progress updates being posted on Facebook and who sacrificed to be with me, to make sure I knew they were all in my corner.  I’m really grateful I was awake enough to remember their visit.

I had to take a visual field test at the neuro-ophthalmologist’s office to gauge what I could actually see. This is a pretty standard test where you sit with one eye covered and stare into a machine. You stare at the light in the center of the screen and click a button whenever you see a blinking light in your periphery. I’ve taken this test numerous times since, but this first time was the worst. If it was a pass or fail test, you could say I failed. I could not stay awake. It didn’t help that the room had to be dark for the duration of the test. It’s maybe a five or ten minute test and they kept having to stop the test to wake me up again. Over and over and over. It’s comical now, but it was pretty scary then. I vaguely remember this first test but I had no idea I had been falling asleep so frequently.

I slept through most of my daughter’s 4th birthday party. I remember bits of pieces of that event but only after I was shown videos and photos showing that I was there. I cried watching the video because I didn’t even feel like I knew who I was looking at. It felt like sort of an out of body experience. It breaks my heart a little to realize how absent I was for so much of my children’s everyday lives during this period. I can never get that back but you better believe I’m doing everything I can now to make up for it. I have asked my daughter over the years if she remembers me before I was deaf and she always says she can’t. She does remember thinking she had caused my hearing loss because she had been making too much noise. She was only four years old. You know?! See, now your heart is breaking too. 

I also remember Thanksgiving that year. It was the only year within the past decade I didn’t host. Because of course, I was checked out. This made me sad but I was grateful that my husband’s grandparents were willing to fill in and host at their house. I went with no expectations and I was happy to be with loved ones. But when I sat down at the dinner table, I looked down and could not decipher what was on the plate. See, my visual impairment also includes some atypical color blindness, making it difficult to identify anything with bland, muted, or similar coloring. I looked around the table at all the smiling faces as people chatted in silence over their meals. It was just too much. I was there, but I was still missing it. My favorite holiday. With tears spilling over my face, I ran to the bathroom. I was able to calm myself down but I didn’t want to face the family with this red, splotchy, sad face. I cleaned myself up and returned to the table, apologizing for my abrupt exit. I certainly didn’t want to ruin everyone else’s Thanksgiving. And then my daughter Natalie reached over and hugged me. Because God speaks love and grace through four year olds. Of that I am certain.

So that’s how I spent October and most of November. In a dazed, trance like state. I was never left alone. I had a friend who came and stayed at the house with me every weekday while she home-schooled her children. She made sure I was fed and that I took my medications. She even helped with housework quite a bit and kept me engaged as much as possible. When I was too afraid to do normal things like showering, she never laughed or pitied me. She somehow understood the state of fear I was in and rather than scoff at me, she gently encouraged me to take everything one small step at a time. 

When I was too afraid to cut an apple for fear of slicing my hand, she told me she believed I could do it and looked forward to the day I would have the courage to try again. So when that day came, I didn’t tell her what I was doing. I just slowly sliced that apple, artfully laid the slices out on a plate and walked up to the dining room table with a proud smile on my face. She smiled back with tears in her eyes (I imagine) and gave me a big mama hug. Cutting that apple was the first big step for me on the long and arduous path of healing and rehabilitation. I still had a long way to go, but that small but meaningful victory over slicing an apple gave me the courage and confidence to keep going, one tiny step at a time.

Deafness, Hearing Loss, Low vision, Multiple Sclerosis, Stories, Visually Impaired

The next thing to go…

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I mentioned at the end of my last post here, that I thought it was the steroids that were affecting my vision. As it turns out, it was not the steroids. What I had started to notice was that things looked blurry or foggy. It didn’t seem to really bother me until I was driving home from a weekend out of town with my sister. I remember closing my right eye for the entire drive home, because it seemed to help. I do realize in hindsight that isn’t the safest way to drive. I should have known this, given a previous experience with wearing an eye patch, but that’s for another post to come.

This was mid-September of 2013, roughly a month after my hearing loss. I still couldn’t hear much of anything, but I do remember blasting my music really loud in the car, so I must have still retained a small level of hearing. Not enough to be functional, unfortunately.

I had just finished a round of intravenous steroids the day I left for this trip, which is a standard course of action for MS relapses. At this point I had steroids injected into my ears, taken orally, and infused intravenously. None of it was curing my hearing loss. It may have slowed the progression of my vision loss, but did not stop it completely. At the peak of my vision loss, I was left with a VFI (visual field index) of 60% in my left eye and a measly 20% in my right eye. If you’re doing the math, that’s a 60% overall loss of visual field. Meaning I can only see 40% of what everyone else sees. And there’s no order to it. The blind spots are scattered, as if someone had taken a completed 1000 piece jigsaw puzzle and randomly removed 600 of the pieces. You might still be able to tell what’s in parts of the puzzle, but you never get the whole picture. That’s my new literal worldview.

I can no longer drive, and I have an extremely difficult time reading and writing (sadly, those are three of my favorite activities). I’ve had to make adjustments, millions of tiny little adjustments, to make life feel normal again. To feel useful. Capable. Whole again. Rehabilitation is a long, slow process. I’m still working at it but you can bet I’ve come a long way since that fateful fall season of 2013. This was just the beginning…

Deafness, Low vision, Multiple Sclerosis, Photos, Running, Visually Impaired

Capital City River Run 2022

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I ran another race! This one was kind of special because my plan was to run it solo. Back in May I had a nice conversation with the race director and she made me feel really confident that it was something that I could pull off. And that if anything were to happen to me along the course, I would be well taken care of. The Capital City River Run is a race right here in my hometown. They offer a couple different distances, with the longest being the half marathon. That’s what I ran this weekend. The people involved in this race are incredible and there’s just something magical about running around this city that holds so many memories of my life over the past 25 years.

Hanging out with the back of the pack, waiting for the countdown. I am super grateful for the enthusiastic and supportive pacers.

To be honest, right now, four hours after I finished running, I’m wondering why I even do this to my body. I ran a strong race, my legs were holding up well, but a short time after it was over, I started feeling really ill. Stomach upset, nauseated, and lightheaded. I’m feeling a lot better now after a nap and a shower, but my body is still questioning my life choices.

The bottom line is, I had FUN. And I’m so glad my husband reminded me of that when he dropped me off that morning because I was so nervous and scared that I was forgetting the whole reason I was there in the first place. To have fun. Running is fun. People who run are fun. And when those inevitable hard days come, it helps to remember you ran some really awesome races that were hard to do but you ran them. You set goals and you didn’t give up on those goals. You met people along the way who cheered you on even as they were battling their own struggles, fighting to finish their own races.

And fast forward; it’s now Tuesday. I had to pause writing this post on Sunday because I was just so tired. And I didn’t finish it on Monday because Fatigue. Level 10 fatigue, all day Monday. I wasn’t in so much pain as I had expected to be in. Just a bit of hip pain on the right side, but I was definitely feeling more fatigued than I had anticipated. Y’all, I could barely hold my head up sitting at the kitchen table to eat my breakfast. All day I was struggling to move. Fatigue is the most common symptom of MS, and I’ve learned to avoid it most of the time by keeping up with regular running. This race, however, kicked me right in the rear. Leading up to the day of the race I had already decided to dial it back on the long races, because I had so much trouble keeping up with the training, but Monday, that decision was cemented in my mind. I am super proud of my accomplishment, but I need to take it easy for awhile. My body made that glaringly obvious – the debilitating fatigue that keeps me from doing basic, simple tasks is just not worth it right now. Maybe down the road I’ll set my sights on another pie in the sky goal, but for now I am ready to do some serious resting.

This was Sunday, post-nap. I ran 13.1 miles and did not die!!
Hearing Loss, Multiple Sclerosis, Stories

The Start of My Hearing Loss

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It was early August, 2013. The first week, in fact. I remember because I had jury duty. A welcome reprieve from my demanding job as Accounting and Collections Manager. I remember sitting at the back of the courtroom, waiting for my name to be called, and there was this subtle ringing in my ears. The sort that you might have after attending a loud concert. I believe it was constant, but I was able to ignore it most of the time. Until I went home and had the added distraction of children arguing. Kids can be so loud sometimes. I snapped at them to be quiet, which was not unusual for me to do. However, Mike must have sensed that something was wrong because he told me I should call the doctor in the morning. I did call, and was able to get into the family doctor the following day. By this time the ringing was becoming more persistent, and now when people were talking to me, their voices sounded strange. It was hard to describe then, and even more so now after all this time. Tinny is the word I think I used. As if people were talking into a tin can. That’s just a guess of course; I have no idea what that would actually sound like. This all left the doctor thoroughly stumped, and so she referred me to an ear, nose, and throat (ENT) specialist.

I called the specialist to schedule an appointment that afternoon but they couldn’t see me for a few days. “A few days” doesn’t seem like much, but it turned out to be an eternity. That phone call was the last call I made as a naturally hearing human. By the time I went to see the specialist, those few days later, I had lost any ability for word recognition. What I could hear at that point, which was diminishing quickly as well, sounded garbled and distorted. Turning up the volume or talking louder did no good.

A friend accompanied me to the visit with the ENT, and it was a good thing she did, because I had no way of knowing what was being said to me. The ENT pulled his hearing aid off his own ear, held it in his hand, pointing to it as he spoke. I tried desperately to read his lips, while also looking at the hearing device as he pointed. It was useless. Even skilled lip readers only understand 30% of what’s being spoken. Don’t let the movies fool you; lip reading is very difficult, and very inefficient.

I went home that day with a borrowed hearing aid – thank goodness not the one the aging ENT had been using – and was instructed to try wearing it for at least an hour a day. It was no use. It did amplify sound, but the sounds were so distorted it was impossible to understand anything. It was just frustrating noise. Hearing aids were not going to help me.

I was soon referred to an ear doctor, an otolaryngologist to be exact. This office specialized in hearing issues, and was not at all surprised by my rapid onset hearing loss. They got right to work at treating it the best they knew how, and that meant steroid shots. In my ears. Now, I can think of worse areas to have needles inserted, but ears are right up there. I had to lie on the exam table, on my side, as still as possible. The medicine was injected into the innermost part of my ear and I had to sit there for a half hour while the medicine dispersed. It was very painful, and I gripped my husband’s hand for the entirety. He never left my side. After the first ear was done, I had to turn over and do it all over again with the other ear. Once that special torture was over, they sent me home with a prescription for oral steroids where I would wait and hope for a miracle.

The miracle I was waiting for did not come.

Journal Entry 9/11/13: “I am nervous and anxious. Every minute of the day. The tinnitus is relentless and loud. The steroids make my legs shaky, and my vision blurred. I worry because I can’t hear what’s going on around me. If I can’t see it happening, I’m unaware. Where are the children? Is the water boiling yet? Did I remember to turn off the garbage disposal? This is difficult for a control freak. I have to let that go.”

I found out later that it was not the steroids affecting my vision…

Deaf and half-blind runner with multiple sclerosis