I was standing at the coffee counter at the back of the church one Sunday, chatting. Clay came up to get a cup of coffee and was asked which kind he preferred, dark roast or regular. Clay answered, “Either one. To me, they both taste the same.” But I started chuckling, because what I heard – with these amazing but fallible cochlear implants – was, “They both taste like shame.” I told him what I had heard and we shared a laugh.
He was still laughing about it while trying to deliver the welcome message to the congregation.
When they offered communion, as they do every week, I quietly walked up to get my bread and juice. When I sat back down to pray, all I could think about was, “this does not taste like shame.” And when I turned around and shared that snippet with Clay, he said “No! It tastes like mercy.”
Mercy, indeed. I love the constant reminders that I am offered this gift of hope and freedom that I 100% do not deserve. I mess up on the daily, and yet Christ is always in my corner. Through my faith in Him, my relationship with my Creator through prayer and studying the Bible, I have peace. So much peace. I didn’t for a very long time, y’all. I’ll admit that. Like any relationship, it’s had it’s ups and downs. But God never changes. He is steady when I am not. He does not taste like shame. He offers mercy. So much mercy.
So. For the month of March I had attempted to go without sugar. The processed stuff of course; I did not abstain from eating fruit. Girl needs her fiber, you know? I made it 3 weeks, and here’s why. It really didn’t seem to make that big of a difference! I had been warned that I would go through a brief period of withdrawal, headaches, mood swings, etc. I had none of that. I expected to lose some weight. That didn’t happen either. My conclusion? Maybe I don’t really eat that much sugar. So after 3 weeks of this mild deprivation, I gave up the experiment. And again, nothing really changed. The only thing I really learned is to be more aware of what foods contain added sugars and how much. And I will continue to try and avoid those things as much as possible, but I don’t think I’ll go completely cold turkey again. I love donuts too much.
My new goal, for the month of April, is to complete some sort of exercise every single day. I’m 5 days in, and I’ve only missed one day, but I got right back on track the next day. This missed day was Friday. I just couldn’t will myself to do anything, I was so tired. However, upon reflection I realized the reason I was so tired was because on Thursday I went for a run during the day, and that night I went swing dancing and then to karaoke. So couple a late night with two forms of exercise, and I think I earned that pass for Friday. It’s my game, so I’m going to allow it. Moving on.
Today I ran two miles to the convenience store to buy myself a belated birthday donut (my birthday was in March, the no sugar month, which in hindsight was not very well thought out). While on the way I decided I would also buy donuts for my kids and then just walk the 2 miles back. I did not feel like running while holding a bag of donuts. So I completed 4 miles, half running, half walking. Decent workout. My legs will thank me tomorrow. And the kids were pleasantly surprised about the treats.
So, I need to be real honest here. I went most of the winter without much running. I didn’t do much strength training either. However, I have been slowly starting to get back to the gym for strength training, and I occasionally get out there for a run. Michigan has really been struggling to let spring in, because even when the temps are reasonable, the wind brings them right back down. One, I don’t like wind because my cochlear implants make it extremely loud and that’s just annoying. Two, it’s cold man!! Running helps my body warm up in most places, but my face and fingers and toes still end up chilled to the bone and it just makes me grumpy. It does not make for enjoyable running. Of course, I’m still grateful to be able to run but I seem to remember having more joy with it, and I can’t seem to find that yet. I need a race on my calendar to get excited about. I’m working on it. All my runs have been short, 2-3 miles, and that doesn’t really get me out of my neighborhood. I want to be free! I want to explore the trails! Get me away from the road, I want to run by some people walking their adorable dogs! I’m reminiscing my marathon training days, and longing for that feeling again. Not that I have plans to run another marathon anytime soon. A half, maybe. We’ll see. I definitely want to do more 5ks and 10ks, but only if they involve fun swag. I’ll never win these races, and I can run at home for free, so good swag is a must for me.
So yeah, goals. Limiting sugar and exercising regularly are two things I’ve really been working at to keep myself as healthy as possible. It’s what I’ve gotta do to fight disease progression, and I think it’s going pretty well. Most days I feel pretty good. I still tire super quickly and take a long time to recover, but at least I’m having those moments where I’m able to be more present with the people I love. These are good things. While I’ll never say I’m thankful to have M.S., I’m always grateful for what I’ve learned from the challenges it throws at me every day.
It’s bedtime, folks, and I almost forgot to post! My head is all squirrely today. Trying to set up new phone and learn necessary features is such fun. I mean, not really. It’s exhausting, but I’m getting there. I had some trouble last night getting it properly connected to my cochlear implants via Bluetooth, but I handed it over to my daughter and she was able to get it working. Teenagers, you gotta love ’em!
Today was a fun day filled with great conversation with beautiful people. First, at BSF (Bible Study Fellowship) and then later with two of my besties. Three days in a row spending time with awesome women. I am feeling super blessed this week.
Tomorrow and Friday the plan is to wind down and regroup. I have an early morning online meeting with someone from the kids’ school – nothing major, just some routine business to take care of. Hopefully it will be quick and painless lol I had thought about going to the gym afterwards but I decided to postpone that for Friday or Saturday because not being home much for three days in a row leaves me wondering what is needing my attention. The kitchen, fridge, our personal finances. All of it needs some TLC so that’s what I’m looking at. I’m sure you’ll enjoy reading all about that after the fact, right?
I’m enjoying these quick daily updates. One thing I should mention before I go – just to keep it M.S. related for all those who may be curious – setting up this new phone, finding all the features, reading the screen, etc. is utterly exhausting on my eyes. It’s legit work, for real. I find I need to take super frequent breaks to rest my eyes. When they start acting all stabby and bouncing around, I know I’ve overdone it. It’s slow work, and I’m really trying hard to stay thankful that I still have some vision and it’s remained stable all these years.
And that is all, I’ll let you go now. Sleep well, my friends!
I have great news. My fatigue levels have been going steadily down, my left leg has become way more responsive, and as of today, I am feeling zero nerve pain on my back! I can cautiously say I am back to my previous “normal”.
I first noticed the energy levels coming back a few days ago. I had been walking around the house, originally for accomplishing only necessary tasks like using the restroom and drinking coffee. But somehow along the way I realized I was *also* picking things up and putting them away, cleaning small problem areas in various rooms. It was only when my daughter said to me, “you need to sit down”, that I realized I had been doing anything extra. I thought she was telling me to sit down so I wouldn’t spill my coffee (as I often do), but she said it because she noticed I was audibly out of breath from walking up the stairs. That was the moment it dawned on me. I had been cleaning, and that walk up the stairs to my bedroom was the last straw for my lungs, apparently.
Let me just pause the update right here and share with you the poignant realization that came to me at this time. What dawned on me was this: I am not a lazy person. I do the things that need to be done, when I am able. Even more surprising, I don’t often have to think about it; I just do it. This realization gave me such pause because one of the things I’ve been struggling with over these several weeks of constant fatigue is the feeling like I’m not measuring up because I’m not doing the things I normally do. I was feeling like an unproductive and lazy person. I don’t know why the voices in my head tell me such awful lies, but they do. So while I was happy to have some energy creeping back, I was also sad to think that all that time when I could have been resting peacefully and allowing my body to heal from this wretched attack on my nerves, instead I was beating myself up for not being more productive. I think we like to call this, “stinkin’ thinkin'”, and it’s got to stop.
So I’m putting this here for two reasons. One – so that I can come back to it when those awful thoughts inevitably come back to haunt me and two – so that you can learn from my mistakes and be kinder to yourself as well.
Now back to my health update…
When I realized all these symptoms that had crept up weren’t going away, I had reached out to my neurologist’s office. They ordered lab tests, which all came back normal. They would have liked to see current MRIs to check for active lesions on my brain and spine, but since I have cochlear implants that’s not an option for me. Some newer cochlear implants are safe for certain MRI machines, but not mine. I would have to have them surgically removed first. Not happening, that’s overkill. So, since they couldn’t get updated MRIs, we just moved forward with treating my symptoms. The nurse practitioner talked with me for over an hour in her office, discussing diet, exercise, sleep, stress levels. Through our discussion I think we landed on two possible culprits, poor sleep and high stress.
We’ve addressed my poor sleep quality with a small nightly dose of gabapentin. I have taken this in the past at a higher dose for nerve pain in my legs, but never on a consistent basis. She wanted me to take a small dose every night to let it build up in my system, knowing it would help me sleep but also may help with the nerve pain in my back (the technical term is dysesthesia, if you care to look it up.) The gabapentin did not have a noticeable effect on the dysesthesia. However, it is absolutely improving my sleep quality and I think that has been the #1 factor in the abatement of all my symptoms.
Sleep is an easier fix than the second factor. One of the first questions the neurologist’s assistant had asked me was, “Have you had an increase in stress level?”. Big Fat Sigh. You could say that. I told her we had recently lost a close friend to cancer. Our friend Dave passed away in January, after fighting an aggressive cancer for five months. Five months that felt like both an eternity and a blink of an eye. Dave had been like a brother to us for 25 years. His family is our family. He was only 47, and he’s left behind a beautiful and amazing wife and two grown children. He was my husband’s best friend. His wife Sarah, one of my best friends. His absence is still felt daily in our home.
I shared with Sarah shortly after his passing that I didn’t feel like I had the right to be so sad because he wasn’t MY husband. He wasn’t MY best friend. But she – so graciously and that’s why I love her so much – told me we all had the right to grieve. We all grieve in different ways, and that’s okay.
I didn’t intend for this post to be about anything other than my health update, but it has taken this turn and I’m going with it. What I’m acknowledging is that Dave’s illness and passing was more stressful than I realized. Prior to this I was fortunate to say I hadn’t dealt a whole lot with death. I hadn’t lost a lot of people I was very close with. My immediate family and close friends are all still living. But Dave was close, and I know this because his absence is still felt here in our home. Reminders of him are everywhere. When we were searching for old photos of him for his memorial service, my husband and I joked that we had more pictures of his kids than ours. We have so many great stories, memories of time spent with him. We will never forget him. We are sad, heartbroken, but we know he is now at peace and no longer suffering. And if he were reading this he would say let’s move on Mel, this is depressing.
Okay? Okay. Back to the health update…
So, externally, I can acknowledge that my grief changed the way I was eating, drinking, sleeping, exercising. All the normal, healthy habits I had worked to establish went out the window. And internally, I was holding in a lot of emotional pain. I still am somewhat, but I’m working through all that with prayer, journaling, therapy, connecting with friends and family. My heart is healing.
I have been getting back to my healthy habits, but the reality is that my body tends to delay in its reactions to stress. I am generally a slow processor – “don’t rush me!” – and this translates neurologically as well. In fact, when I had the BIG relapse in 2013 that left me deaf and half blind, it all started one week after I completed my last college class to complete my bachelor’s degree. I had been under a lot of stress, and my body held that in until after it was over. So I think that’s kind of what has been happening now. I was holding in a lot of that stress and grief and when I started to let go of it, my body reacted. Stress and M.S. are a really bad combo. I need to remember that moving forward and be more mindful of my stress levels. Know better, do better. Be kind to yourself, and rest when you need it. That lesson is for both me and you. Do you hear me? It’s for all of us. Shalom, my friends. Shalom.
My second run of the week almost didn’t happen. I had a lot going on this week, I guess. However, thanks to my new gym membership, I was able to get it done after dinner! The display on their machines is nice and bright and easy to read, but it shuts off after 65 minutes so that’s all I ran that day.
I love running by this house. They have a water bowl set out in the front yard and the sign above it reads, “Water for your dog! Or short people with low standards. We don’t judge.”
Hallelujah the bridge is not flooded!So stoked to be able to continue on the trailGorgeous viewsShining water, and some ducks I believe
I really was having fun on this Saturday long run. I was so excited to see that the bridge wasn’t flooded, even though it had been raining that morning. It looks like they put new pavement in to raise the trail up a bit, and that’s likely why it stayed dry. It allowed me to continue on the trail, which made me pretty happy. It’s a really nice trail. Lots of wild flowers blooming, and I heard a lot of birds chirping. Didn’t see any bunnies though.
Since I had to delay starting my run due to the rain, the temperature caught up with me. It was up around 80 degrees even before I was halfway done, and I was slowing down considerably. I was finishing up my 11th mile and was on a long stretch of trail that had zero shade. I had been keeping up on my run/walk intervals but it was on this trail that I could no longer run. On one of my 60 second walk breaks I quickly realized I was in no shape to start running again. I knew my body would not be able to carry me another 6 miles. I called my husband and he came to pick me up.
I tried to tell myself this was not a failure, nor me giving up. This was me making a wise decision to protect my health and wellbeing. I still have lots of training left to do, and I’m still getting stronger. But I still worry some, because I really want to do well at this marathon. Whatever well means for me, anyway. Better than the first one, I guess.
I’m still worried about injuries. My knee, my ankle, my big toe. All of these problem areas are doing mostly okay, as long as I run with protection. I wrap the ankle and the knee, and I buddy tape the big toe. It all seems to be preventing injury but I’m planning on talking to my doctor this week to be sure.
So Saturday’s run turned out to only be 11 miles, not 17. I tried to get the remaining 6 miles in today, but it was again too hot and I have been dealing with stomach issues so I only got in an extra 2. Total mileage for the week was 22.78 which still isn’t too shabby, right? Half marathon training miles of 193 plus 139.25 marathon training miles brings me to a total of 332.25 miles. There are 77 days to the marathon and many more miles to train! Let’s goooo!
So. I ran another half marathon. This is the one I was training with a friend for, only she was not able to run the race due to a foot injury. However, she was sending me cheers from home throughout the race and was surely with me in spirit! Also, the race went as well as could be expected. Would you like to hear all about it? Grab a tasty beverage and sit back.
This particular race, Bayshore, has been kind of a dream of mine ever since I heard of its existence. The race offers 3 distances, the 10k (which I ran last year), the half marathon, and the full marathon. The races are located in Traverse City, Michigan, where my dad’s family essentially called home for many years. The small city is located in northern Michigan and is home to the Old Mission Peninsula, which is flanked by the Grand Traverse Bay. My grandfather owned property on the peninsula, on the West Bay, and my cousins and I spent a week every summer there. We have so many great childhood memories from our time “up north”. We ate cherries, we hiked, we swam, we strolled along the shore searching for Petoskey stones. My husband and I honeymooned at the cottage, sharing my childhood memories and making new ones. We’ve had family reunions there. My paternal grandparents are both now buried on the peninsula. The property my grandfather owned was eventually sold and the cottage is now gone, but a big piece of my heart still lives on Old Mission. So when I learned there was a race that actually allows you to run all over the peninsula? Sign me up! I ran the 10k last year, which was satisfying but slightly disappointing because only a small portion of the race I felt like I was ON the peninsula. The half marathon distance starts at the north end of the peninsula and follows the coastline of the east bay all the way south into town. This was the race for me.
Now I want you to understand that racing for me is terrifying at moments. Not being able to see the start from far away, being unfamiliar with the terrain. It’s not like home where I’ve memorized the potholes and cracks in the roads and sidewalks. My anxiety for this race began building several days before the race. But standing in the chute among all the other runners was somewhat calming. I was finally here. And I had trained for this, I was ready to go. Until I realized I was standing near the wrong pace group, among runners way faster than me. Not to worry, I simply shuffled back until I found my people. As I stood there waiting I checked my phone and realized I had lost my Bluetooth connection to my cochlear implants. It’s a good thing because reconnecting involves taking off my hat in order to remove my left cochlear implant, remove the battery, replace the battery to make it “discoverable”, put it back on my ear, put the hat back on, etc. So I’m glad I had that time to make sure I was connected. I rely on my music playlist to keep me going throughout these long runs.
Once I was situated and connected I got back to bouncing around to keep my legs warm and as I’m bouncing I realize there’s a strange stillness all around me. It occurs to me that everyone is looking in the same direction, some with hands on their hearts. Ah! It must be the National Anthem playing. I hope I didn’t do anything disruptive or disrespectful. It wouldn’t be the first time. No worries, carry on Mel.
I wish I could remember more of the details of this race, but I’ll share with you what I do remember. Coming up the first hill, I marveled at the vineyards stretched out on each side of me, and the East Grand Traverse Bay glistening in the morning sun ahead. The road leading me forward, filled with runners. I don’t want to forget that moment. Or later, coming around a curve to an open expanse, my view filled with brilliant blue water on my left and lush green evergreens on my right. I thought about taking a picture there because it was so freaking gorgeous but it wouldn’t have done it any justice, and it would have taken away from my enjoyment of it. I would have wasted the moment fiddling with my phone, most likely unsuccessful anyway.
I continued running, soaking in the atmosphere and the majestic scenery. All the anxiety had disappeared. I was thanking God for this experience. It was incredible. I felt strong. I was at peace. It wasn’t until I was about 6 miles into the race, that I started to really feel the burn and the soreness of my legs. I still felt strong, and my legs were moving well. That’s also about the time I started to see more and more spectators. Kids giving high fives, dogs wondering why all these people are running in the street. Posters lovingly prepared: DIG DEEP – a POWER button – WORST PARADE EVER. I love these races. You think making a poster and standing at the side of the road isn’t a big deal, but it IS. Without the spectators, it’s just a grueling training run. We NEED these people.
Around the 8th mile I was starting to really struggle because the weather had warmed up quite a bit. I decided to take my shirt off during my next walk break but with the deaf/blind vest and the sweat sticking to my shirt, it took longer than I anticipated. So by the time I got reset I was running through an aid station with a gang of onlookers to my comically awkward process. It didn’t matter. There’s no shame among runners, and these people understand and have likely seen it all. In fact, later in the race I was passed by a woman carrying her shoes, running in her socks to the next aid station. You do what you have to do. So it was a bit of a chore to get that shirt off but it was so worth it to lower my temperature a few degrees. It gave me the rejuvenation I needed to keep going.
The last few miles of the race honestly felt like drudgery and I just wanted to be done but those spectators kept me going! The runners were still moving ahead of me and I just kept reminding myself what I came for, and that was to complete this race. And I did! I finished! I set a new personal record for myself, and I did not fall. Though after the finish I was struggling to walk. My left foot knew we had crossed the finish line and just refused to lift, so I hobbled along the fence line until I saw my husband and kids walking up, all smiles. They escorted me to the recovery area and found me a chair and some ice cream. It was an incredible moment, getting to share this accomplishment with my three favorite people in the world. I tear up just reliving it.
This was such a great race. It was so difficult, but I have to accept that reality because I’m signed up to run my 2nd full marathon in October. Yes, yes I did. I swore I wouldn’t run another one but it turns out I lied. I’m glad I already committed to the marathon, because I think I would have chickened out after this race. It was a sobering reminder of how difficult and painful it is to run a lot of miles, but it was also a good reminder of the immense joy I still find in running.
It’s serendipitous that my devotional this morning actually talked about how we can have joy and pain coinciding. We can feel both simultaneously, and that’s an incredibly mysterious fact of life. There will be pain. Expect it. But also we have in us what it takes to keep moving forward and find joy in the midst of it. I am so grateful that God has sustained me as I continue to run. That He has given me the inner strength to keep challenging myself and doing these ridiculous races that both terrify and thrill me.
Isaiah 40:29-31 ESV “He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.”
I had originally started this post around the new year, and forgot about it. As we are coming up on the anniversary of the events, I thought it would be a good time to finish the story. Also, a disclaimer: the photos included here lack captions because 1) I couldn’t figure out how to add captions and 2) with my vision I’m not even entirely sure what’s in each photo. So I apologize to all the other visually impaired readers out there.
In April of 2021, my husband Mike and I were looking forward to celebrating our 22nd wedding anniversary with a weekend trip up north (Up North being a big deal in Michigan). We had planned to leave Friday afternoon, while the kids were still at school, and Grandma was to come and stay the weekend with them.
On this fateful Friday morning, I was frantically awoken by my husband. When I opened my eyes I could sense there was an emergency but could not tell what. I hurried to put on my cochlear implants, and when I did Mike handed me a stack of towels and said “You work up here, I’ll work downstairs.” A few short steps from my bed, and it did not take me long to realize that the floor was soaked. Our bathroom sink had been left running when I got up several hours earlier to use the toilet. I can’t tell you how many times in the past I had gotten up in the middle of the night to go the bathroom and left the water running. Only every other time it had happened, my husband was awake enough to hear it and made sure I got back up to turn the water off. This time that did not happen. The water had been running for several hours, and because it was a slow drain, the water quickly overflowed. The water had spread from our master bathroom, to the carpeted hallway, and through the floor to the main floor ceiling to the kitchen. And then through the kitchen floor to the basement ceiling.
I was devastated. Stunned. In disbelief. In a whirlwind of activity we managed to send the kids off to school and get everything cleaned up the best we could. It was still very early in the morning so while we waited to talk with an insurance agent, I sat on my husband’s lap and sobbed into his shoulder. Not only was our trip cancelled, but I couldn’t believe the mass destruction I had caused to our home. Mike had nothing but compassion for me. He had been angry all of 3 seconds when he discovered the damage, but from every moment thereafter he was in problem solver mode. He kept saying this could be a blessing in disguise. I had always hated the look of our kitchen, and now we would get to pick out our own cabinets, countertops, floors, etc. It could be fun!
I wouldn’t say the process was fun, however it was nice to discover I did have opinions when it came to the kitchen and bathroom designs. And there were a million little decisions we had to make together, so it gave us some good practice as a married couple. After 22 years of marriage it was nice to find we could work out our differences and make compromises without killing each other.
When the restoration crew came to assess the damage they brought very loud drying machines and put them on all 3 floors of the house. They had to cut holes in the kitchen and basement ceilings to get them dried. They ripped out our soaked kitchen and bathroom cabinets, and with them the countertops they were holding up. They put up plastic sheets as barriers because they had detected mold in the kitchen. It was a mess.
We got to work right away at choosing replacement materials, but there were supply chain issues so it did take longer than we had hoped for. We still had use of our fridge and stove, but no place to prepare food or wash dishes, so we lived on fast food for the next several months.
Oh, did I mention that I had already started training for my first marathon at this point? Yep. Marathon training on a fast food diet? Not ideal. But our family got really good at knowing how to get the best deals at all the fast food restaurants. Biggie Bags at Wendy’s, Five Dollar Boxes at Taco Bell, all the value menus. It was fun! (She said, facetiously.)
Anyway, all was restored by early September, just days before my marathon, and it was beautiful. I was so happy to have my kitchen back, I swore to never talk about hating to cook every again. I am grateful for the privilege of having a kitchen to prepare food in.
We put a motion sensor faucet in our bathroom, so that this would never happen again. It took a little getting used to, but it’s been effective; I’ve never left my bathroom faucet running because I’m not able to. I seem to remember one of our kids asking around this time, “why don’t we put one in the kids bathroom too?” And the reply being that there was no reason to because Mom never uses that bathroom. Well, never say never…
Fast forward to April of 2022, almost a year following the major flood. I was blasting my music through my cochlear implants, drowning out all other sounds, and doing a bunch of power cleaning. I noticed the dryer was quite dusty, so I grabbed a washcloth and ran to the nearest bathroom (the kids bathroom, which is the other full upstairs bathroom) to wet the cloth and wipe down the dryer. I continued my work, flittering around the house. My daughter had come home from school, used the small bathroom just off the kitchen, and when she walked out of the bathroom noticed a problem. She hurried upstairs to let me know, “Mom, the kitchen ceiling is leaking!”
I had NO idea what could be causing that but I zoomed into crisis mode. I handed her a bunch of towels and told her to grab a large bowl from the kitchen cabinets, put it under the leak, and start drying the floor (our practically brand new kitchen floor!). I was frantic, not knowing what to do, so I called my husband. He calmly walked me through turning the water off in the house and then gave suggestions for where to check for the source of the leak. I walked upstairs and opened the door to the kid’s bathroom (why was the door shut anyway?) and walked into a cloud of steam and water dripping off the countertop. It was then that I realized I had left the water running after wetting the cloth to clean the dryer. I could not believe it. I had done it again. Thankfully my daughter had caught it in time and the damage was not as severe, but the damage to my ego was just as devastating the second time around, if not more so. I had come to learn after the first flood that it was actually quite common, for people to leave faucets running and flood their homes. I never learned the statistics for two-time offenders but I was sure it was more rare.
The ironic thing is, we had planned a trip for our 23rd anniversary, since we didn’t get to take it the year before. And when I asked Grandma to come stay with the kids, I told her – jokingly – I wouldn’t flood the house this time. And then, of course, I did. Thankfully it happened a few weeks before the trip so we were still able to go. And boy, did we need that trip. It was just for the weekend, but it gave us time to process and reflect on all that had happened, and to be thankful that we were still crazy in love even after all the difficult things we’ve been through. Maybe even more so because of the difficult things we’ve endured. And when we look at those challenges we’ve had to face over the decades, dealing with a flood or two is no big deal.
Now I’m just praying that I make it through this year without causing another major disaster. And I’m extremely grateful that my family loves me despite my propensity for calamity and can laugh about it all now!
I’ve been mulling this story over in my head for awhile now, trying to figure out how to tell it in a way that conveys the hilarity that I felt when it happened. Here we go!
My friend Tara was coming to visit from out of state. She, her husband Scott and their two sons had moved out of Michigan years ago and it had been some time since I had seen them. They were in town for a few days and she wanted to stop by and catch up. I was so excited for this visit, and for them to meet our new dog, Punky. I was letting the dogs play outside while I waited for my friends’ arrival. I like to do this when company comes over because the dogs can be a bit much and the exercise helps to calm them down (or so I like to believe). Tara and her family arrived, and I was so excited to see them! Scott was dropping Tara off for a few hours while he took the boys to the zoo, but they wanted to come in and say hello first.
Scott and Tara are dog people, so I asked if they wanted to meet our new golden retriever Punky, and of course they did. I let the rambunctious dogs inside and they did their dog greeting thing, wagged their tails, barked obnoxiously, etc. And then this conversation happened…
Scott to me: “It’s a bird.”
I have to stop right here and remind you that I am still half blind and deaf. The cochlear implants are great, but I need to be paying attention in order to hear and understand when people are talking to me. Also, if there are other loud noises happening (e.g. dogs barking), they are pretty useless. In other words, I miss out on a LOT of input. My guess is that Scott had said some things that I did not hear, and those things would have given me the necessary context to understand this bird business. Instead, I was starting from scratch with his statement. Now let’s continue…
Me looking blankly at Scott: “Huh? What’s that?”
Scott: “It’s a bird.”
Me: “What’s a bird?”
Scott: “It’s a bird. It looks like she brought in a bird.”
As understanding crept in and my heart started racing, I frantically scanned the room, looking for the “she” that Scott was referring to and that’s when I saw it. A happy, proud as can be Punky, parading a dead bird around my living room.
That’s when I lost my ever-loving mind. I scooted Punky outside as quickly as possible, not wanting her to drop the dead thing in my house. Once she was outside Scott was able to get her to drop the bird, and I brought him an old grocery bag to put it in. Then we let Punky back inside and resumed our introductions.
“So, how have you been? The boys have grown so much! Are those muffins you brought?” Blah, blah, blah.
Then I noticed Scott and the two boys jerking their heads and arms oddly around, looking up and down and all around. What the hell is going on now? Then I hear someone say, “I think we let in a yellow jacket.”
?@#$@?#%#*&!
I couldn’t find the fly swatter, but the dang thing wouldn’t land anyway. It ended up flying inside one of the window blinds and Scott had to vacuum it out. I didn’t use that vacuum for a few weeks, just to be sure it was dead before I emptied the dust cup (yes, I had to look that term up).
I don’t even remember much after this point because it was just utterly ridiculous, all this happening at once. I had gone in a matter of minutes from the excitement of seeing my friends to full on freaking out that there were dead things and sting-y things in my house. All I could do was laugh at the timing and the absurdity. I’m still laughing now.
Scott and the boys left for the zoo and Tara and I settled in for coffee and muffins and talked for hours. It was so wonderful to catch up with her and if it hadn’t been memorable enough, we’ll always share that memory of how it started off with dead birds and dangerous bugs.
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.
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
Little M.S. Runner 