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…

Stories, Writing

Reviving the Blog

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Hi there! You may have noticed, you may have not, but I haven’t been posting here on the blog. There are many reasons for this, and I won’t go into them here, but let’s just say a lot has happened since March. For my own mental health and well-being I had to hunker down and focus. But I’ve come through most of it and have been itching to write again. I find myself writing blog posts in my head while I’m working around the house, running around the neighborhood, riding in the truck, etc. My brain is such a nag. It’s getting quite annoying.

So here’s my plan: I have lots of stories, some current, some old, and I’m going to aim to write every day, to re-work that writing “muscle” that has atrophied, and then I’ll schedule a story to post at least once a week. That’s the plan anyway. We’ll try it for a little while and see how well it goes. Okay? Okay. Let’s goooo!

Anemia, Coronavirus, Deep thoughts, Health, Mental health, Running, Trauma

Thoughts on Trauma

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Trauma. It sounds like an alarmist word. Until you find that it’s exactly the right word to describe what you’ve been through. You didn’t know it at the time, because you were a child and the adults in your life were telling you this was normal. That you had a good life. That you were just overreacting. It was probably just those teenage hormones lying to you about how bad things were. But hormones don’t lie. People do.

And children grow up and start remembering. Often not in clear memories, but in physical responses to situations bearing resemblance to what you went through. That part of your brain remembers, and it’s trying to protect you. Don’t ignore it. Get help. Because while the danger is no longer out there,  it is now within you, internalized and threatening to repeat all the same behaviors that were normalized for you growing up. The rage attacks, the love bombing, the blame shifting, the gaslighting, the confusing and conflicting messages. You’ve got to end the cycle. Work on you. You are the only one you have control over.

All these terms, these are buzzwords. But what they are to me are light bulbs and with them someone finally turned the lights on when I’ve been stumbling around in the dark for years, decades even. The lights are on and now I’m standing in this maze and trying to find my way out. It’s not easy. But I have  cheerleaders, faithful supporters standing to the side shouting directions, whispering life giving encouragement. I’m going to get out of this maze. I must. I am a trauma survivor.

All of that I wrote, previously. But I feel it needs a little more explanation. See I’ve been living in a constant state of anxiety for as long as I can remember. And late last year I discovered that wasn’t normal. The racing heartbeat, the tremors, the cold sweats, the nightmares, the panic attacks. These were symptoms of complex ptsd. I sought help from a trauma therapist back in November and I’ve been seeing her ever since. Twice a week, sometimes three, to work through and properly process the trauma I’ve lived through. My therapist uses a method called EMDR, eye movement desensitization and reprocessing, and it’s fascinating. I had stumbled across it while doing my initial research into what I was experiencing and it’s turned out to be exactly what I needed. Because traditional talk therapy is difficult when you have trouble with your memory. I won’t go in to the specifics of it, because you can look it up for yourself, but I will say it has worked it’s magic rather quickly. In four short months I am far less triggered by every day stressors. I’m finding it easier to relax my shoulders. I’m sleeping through the night (most of the time). The nightmares have waned considerably. I’m getting better at responding as opposed to reacting.

So we’ve stopped the bleeding, so to speak, but I still have a lot of healing to do. My mind is still replaying toxic messaging, I’m still doubting my every decision, my self-worth. I’m still desperately seeking validation every where I go. But I am on the mend, I’m getting the help, and that’s what matters most.

This is a big reason why I have not posted here on the blog since January. Other reasons are related to my physical health. Some of it covid related, some of it related to being a pre-menopausal woman. I think I’ve been anemic for some time, who knows how long it’s been building, but it ended with a trip to the ER the day after my birthday and my first ever blood transfusion, hurray! So I’m seeing doctors, I’m taking medications, I’m on the mend. However, this has all wreaked havoc on my energy levels and my ability to run, which *KILLS* my pride and frustrates me to no end, but I’m trying to remember this is just a season and it won’t last forever. I will get back to running, and I’ll update y’all when that happens (which I hope will be soon, since I have races on the calendar calling my name).

Coffee, Coronavirus, Multiple Sclerosis, Running

Mindy’s Day of Fun

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I have the house to myself on a cold but sunny winter Saturday, for 2 hours. So naturally, I’m snuggled on the couch with a cup of coffee and cookies, jamming out to Lauryn Hill, Nas, and Tupac while I prepare our tax returns. I am living The Life, people. (This is not a joke. Preparing tax returns relaxes me. I am THAT nerd.)

I would be out running (or on the treadmill) but my lungs are still recovering from Covid and I am trying to give them more time to heal up. That and I’m super fatigued so it would be a massive struggle anyway. Sometimes your body just screams “Rest!!” and you are better off listening to it. Even when you would rather be out there doing everything.

Yep, Covid. This Omicron variant is spreading like wildfire around these parts, and our family was hit with it earlier this month. The rest of the fam had really mild symptoms but I was pretty wrecked for several days. My doctors had me go in to get a monoclonal infusion to treat it. I was actually starting to feel better by that time, but they wanted me to have it as a precaution because I guess they are seeing a lot of people improve but then get worse again, and because I have MS they didn’t want me taking any chances. I’m still a little fatigued, but that’s nothing out of the ordinary for me. My throat is still a tad scratchy and I’m coughing a little, but I would say I’m almost back to full strength.

Welp. I’m going to get back to my taxes but perhaps later this week I’ll update again with other news and ramblings. Perhaps?! We’ll see…

Holidays, Photos, Piper, Punky

A New Puppy

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Punky, our new golden retriever puppy.

Meet Punky. She’s a 9 week old golden retriever. We adopted her last Friday and she very quickly stole our hearts. It took us several days to agree on a name. Dad wanted Biggie. Daughter wanted Bailey, so we called her that for awhile, until we learned how common that name already was. I wanted Stevie (Fleetwood Mac, Schitt’s Creek) but noone seemed to like that one. We remembered the golden retriever on the show Punky Brewster, and thought Punky would be a suitable name (Brandon was the name of the dog on the show. Sandy was the actual dog’s name, if you wanna go super nerdy.) It’s taking some practice to get the name right but I’m pretty sure we’re sticking with Punky.

Her big sister, Piper, is not so thrilled about this development. It’s not that she’s intimated by Punky’s energy, because Piper has puppy level energy even at age 7. I think what she dislikes is the invasion of her space. This whole house has her name written all over it, and she does not want to share it. Typical only child syndrome. She will adjust. I’m noticing subtle changes in her daily, so I know she’ll get there. Eventually.

This picture above was taken by Grandma on the third day she was home with us, so she was still super chill and snuggly. It has now been a week and she is still chill and snuggly, but far more energetic and playful. My next post will likely discuss my sudden remembrance of the exhaustion involved with raising new creatures (puppies, babies, kittens, etc.).

I know I’ve not been posting a lot here but I hope to get back to some more regular updates, so stick around. And Happy Holidays!

Family, Multiple Sclerosis

Coping with pain

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Warning: After a new puppy post this might be a real downer. Please bare with me.

I don’t think I talk enough about the pain I experience on a regular basis. Partly because I feel like it’s not so bad, in comparison to other people I know living with chronic pain, and partly because I don’t want to sound like I’m looking for pity. I am definitely not looking for pity. In fact, pity is a huge annoyance to me. When people hear about my physical struggles, what I went through and live with, the most common response is, with a wrinkled brow and frown, “Oh, I’m so sorry.” (In fact this just happened to me earlier this month at my son’s doctor appointment). While I appreciate the sentiment and concern, deep down it makes me feel small. I hate to be pitied. I only share because this is a blog about my life, and my ups and downs with multiple sclerosis.

So, back to the pain (you Princess Bride fans are quoting now, aren’t you? “To the pain!”… Focus, Mindy…) I get a lot of headaches, and if I don’t medicate soon enough when I feel one coming on, they are debilitating. This happened two days ago. I felt it coming on but was so busy with the new puppy I didn’t get around to taking my medicine in time. When I finally sat down and took a pill I was able to turn all the lights off and rest and wait for the medicine to kick in. When you wait too long to take it, it isn’t as effective, but it at least takes the piercing edge off. So when I felt another headache coming on last night, I didn’t wait to medicate. And this time I took two pills, just to be extra proactive. This worked, and I was able to enjoy the evening with my family. Lessons learned.

I also experience body aches at times. An all over pain, both like bruising tenderness and pins and needles. While I can’t predict the headaches because I don’t know what’s causing them, I can predict this all over body pain. It happens after lots of physical activity. I compare it to how you feel after a bad car accident (I’ve only been in one, decades ago, but I remember the pain). I had this pain after I chaperoned my daughter’s middle school camp, after girl scout camp, and even after Thanksgiving. And now I’m experiencing it after a few days alone with a brand new puppy. *Sigh*

So when I know I’m going to be doing something that involves a lot of activity, I have to plan in a couple days following in order to recover. I could avoid the activities altogether, but the memories I make are worth the pain. I’m not giving up on my family or friends just for a few extra days of comfort. Some things in life are worth it.

Cochlear implant, Deafness, Disability, Hearing Loss, Low vision, Multiple Sclerosis, Photos, Visually Impaired

Mindy rides the bus!

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Some things that are easy and simple for most people are things that became scary for me 8 years ago. When I suddenly lost my hearing and then half my vision that fall of 2013, it was a drastic paradigm shift for me. The cochlear implants help a lot, but they don’t provide me with 100% normal hearing. And nothing can be done about my 60% visual field loss.

I still remember vividly standing in my kitchen all those years ago, terrified to cut an apple. I couldn’t see much and I was so unsure of myself. I feared I would cut off one of my fingers. However, after some encouragement from a friend who assured me I could do hard things, I took what felt like a massive risk and I cut that apple.

I can do hard things.

I’ve been working very hard these past 8 years to find some sense of normalcy in my life. There are still a lot of things I cannot do, or can only do in a limited capacity. I cannot drive or cut straight lines. I can’t seem to determine north from west anymore. I get lost very easily. Hearing and reading are both extremely exhausting because they take so much mental effort.

But what I’ve recently learned I can do is walk half a mile to the bus stop. I can get on the bus, pay the fare, sit down, and listen to my phone with my cochlear implant Bluetooth connection to be notified when my stop is approaching. I bought my first bus pass several years ago and I didn’t use it for the first time until this year because I was afraid. I had never ridden the bus before, and I was afraid I wouldn’t be able to hear or read the cues and I would miss my stop, get lost. Not know how to get home.

But then I remember that apple and am reminded that I can do hard things.

My first trip was a couple months ago with my kids, before summer break had ended, and they were there as a safeguard to be sure we got off on the right stop. My second trip was last week with my daughter, who was a huge help calming my nerves. She viewed it as an adventure, and was not worried at all about getting lost.

My third trip was today and I went alone. All by myself! It seems silly to me that I get such a sense of achievement and excitement at riding the bus by myself, because regular people do this every day without issue. However, I have to remember that the functions I have lost between my vision and hearing, do make this more of a challenge. Riding the bus was an entirely new thing to me, so I didn’t have any old habits or familiarity to draw from. It took a lot of courage for me to take these trips and I should not discount that. This was hard for me, and I did it anyway. This was a fear conquered, a giant slayed.

Mindy rides the bus!

I can do hard things, and so can you! What hard thing are you avoiding? What’s holding you back? I dare you to stare that hard thing square in the eyes and just do whatever it is.

You can do hard things.

Deaf and half-blind runner with multiple sclerosis