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.
A few months ago I signed up for a new-to-me 10k. The entire race event is set up to raise funds and awareness for pulmonary hypertension (PH) and multiple sclerosis (MS), and it offered multiple distance options. The name of the 10k distance was “Melinda’s 10k”, which is my full name so you know I just HAD to sign up. I did not look at the course map, and I had no friends who were running it but I wasn’t worried about it. I would wear my DeafBlind vest and be extra careful, and it would be fine. I signed up, and then forgot all about it.
A month ago I received a message from United in Stride, which is an online database that helps pair blind runners with guides. The company was founded in 2015, so it hasn’t been around for long, but I do believe it’s growing. I signed up with them several years ago, when I realized I was getting serious about running, but at that time there weren’t any guide runners in my area so I just forgot about it. Then comes this message from Allison, who wants to know if I need a guide runner for any upcoming races. At first I told her no, because I had forgotten about Melinda’s 10k, but then immediately came back and said yes, actually I do have a race I need a guide for. She was immediately on board! Not only that, she was eager to run a couple training runs with me, which was a great way for us to get to know each other ahead of the race, and for us to practice running side by side.
Me & Allison before the race. Lots of sun! All smiles.
We ran this race together, and it was a good thing I had her with me. For several reasons, much of the course we were the only ones in sight (or at least in my sight): it was a small-town race, not a lot of 10k participants, not a lot of spectators, and I’m pretty slow so I hang at the back of the “pack”. There were several spots in the course where I could have easily made a wrong turn and gotten lost. I was super grateful to have her with me. I had been hoping to beat my previous 10k PR (personal record) from 2020, but that wasn’t meant to be. Not only was it really warm this day, but my fatigue this past month was pretty gnarly and prevented me from doing the amount of training I needed. I was happy to finish though, and I wasn’t too far off my goal, so I’ve got something to work towards for the next one.
Me & Allison after the race, holding up our medals. Still smiling!
The best part about this for me, what I’m really excited about, is that it opens up more options for racing. Up until now I’ve only ever entertained the idea of running races local to me, where I could easily get a ride from my family or friends, and not have to worry about inconveniencing them. The couple I have done outside of our area, my family and friends graciously took me to because they knew they were important to me, but I’ve run out of those bucket list type races. Now I just want to keep racing for the fun of it. It’s hard to ask someone to bring you to an out-of-town race when there’s nothing in it for them but standing around waiting for you to drag your sweaty ass over the finish line (thank you a million times over to my dear husband who does this without complaint, and is always more than willing to hug me and hold me up at the end, despite my level of stink).
So. All that to say, I am stoked to have yet another running buddy. Allison and I have been talking about what other races we could run together, and I love her enthusiasm. I’m old enough to be her mom, which took some getting used to at first, but I think her energy helps to motivate me so it’s a great thing. She made us matching bracelets that say “Unstoppable”, and I’m looking forward to wearing mine at all our future races.
The finisher’s medal and the bead bracelet Allison made for me.
As I was writing this it occurred to me that I don’t think I ever posted about my race from last month, so I’ll get that one started for you too. It will be another great opportunity to talk about my invaluable guide runners. I couldn’t do this crazy stuff without them!
**Note, I started this post several days ago and didn’t finish it. I just didn’t feel like I was writing the way that I used to, or would like to, or “should”. All kinds of silly reasons to abandon a post, but whatever. I’ve been trying to hop back into the art of writing that I have loved, on and off, my entire life. After completing that marathon I was exhausted in so many ways and then lots was happening here at home that required my energy and attention, and then Thanksgiving, and on and on with the reasons/excuses for my absence here. I really desire to get back to regular blogging, regular writing. Lots of changes have happened with me over the last two years so I’m hoping “Writing Mel” is still alive here. I believe she is, and we are just dusting her off a bit. Bear with me, por favor. Gracias. Now back to the original post.**
I noticed when I logged onto WordPress today that they had a writing prompt; the question was “what will your life look like in three years?”. Which is interesting to me, because I was just hopping on here to tell you about a discussion I had with my husband recently that was along these lines. We were basically discussing whether we were content with our lives. And if asked that question, I would say that absolutely, I am content. However, if you had asked me 15 years ago if I would have chosen this life for myself, the answer would have been “hell, no.” I would never have chosen to be disabled and unable to work a job. Having multiple sclerosis, being deaf *and* half-blind, simply put – SUCKS. But I’m 10 years into this, and while it’s taken time, I’ve slowly learned to see (not literally, unfortunately lol) and be thankful for the benefits that have come from it. I’ve learned from these struggles. They have made me who I am today, and I love who that is.
I feel like I’m coming into a new season of life. I’m done training for marathons (for the next few years, at least). My kids are teenagers and can feed themselves (and prefer to, actually). The dogs are pretty low maintenance. So now I’m at a point where I’m learning how to rest. I’m learning how to be okay with sitting still. For as long as I can remember, I have had trouble with sitting still. Not that I physically can’t, but that when I do, there is a general unease felt underneath my skin and deep in my spirit. Like I’m “supposed” to be doing something. I’m often noticing my shoulders are hunched up and I need to consciously pull them back down.
I was actually discussing this general unease with a friend the other day, and she expressed how completely opposite she was from me in this regard, and we had a laugh. She seemed like she was saying she rests too much, and finds herself procrastinating. Sounds a bit like we would do well if we came more to the other’s side and met in the middle. But then where would be the fun in that? I love the variety I see in all of my friends and family members. It’s funny to me the things we experience and think are normal for everybody, when really we are all so different in so many ways. It makes life a lot more interesting, and brings us closer together as we support each other in our areas of strength and weakness.
So back to the season of rest. That’s where I am currently. I still have an ongoing list in my head of all the things I want to *do*, but I’m trying to be more kind to myself. While I’ll never regret running that second marathon, I will admit that I made the commitment without full consideration of my limits; physically, mentally, emotionally. So you could say I’m taking a break. Ish. A semi-break. Evaluating what I value most, and then easing those things back in. It feels a little like riding an inner tube on a lazy river. I’m enjoying it so far.
And that, my friends, is a little taste for you of the rambling that goes on in my brain on the daily. You are welcome. See you next time.
And above we have your girl, Flat Marathon Mel. This is basically what I’ll be wearing tomorrow. Unless I change my mind on the way and switch out accessories. I’m going by the forecast so we’ll see if the weather cooperates. It’s looking to be around 50 degrees and dry. The rule of thumb is to dress for 20 degrees warmer because your body heats up while you’re running. I’ve always followed this rile and it works, but it does feel a little like torture in the beginning when you are standing in the cold feeling drastically underdressed. But I know my body, and I heat up quite a bit, maybe more than 20 degrees, so I believe the tank and shorts should be perfect.
I seem to have forgotten why I signed up for this race so I’ll be spending the rest of the night reminding myself. It’s gonna be fun. It’s gonna be worth it. And God has and will give me the strength to keep going when it gets hard. This race represents all of the ways Jesus has healed me physically, mentally, and emotionally over the past 10 years. This one isn’t about proving i can do it. This one is about enjoying the growth process and celebrating the outcomes. This race for me is about proclaiming victory. We can do hard things when Jesus Christ is our strength.
Lord Jesus, please be with me extra close tonight as I pretend to sleep and tomorrow as I pound the pavement for 6 or 7 hours. May you get all the glory for this one. I couldn’t do it without you.
And also thanks to my cousin Zack, who agreed to be my guide runner without hesitation! He enthusiastically agreed and I’m looking forward to our extended time together. This is such a unique opportunity to share. It’s truly a gift, and I’m excited.
I’m getting ready! Working through my list. This isn’t all of it, but it’s a good portion. I still need to fill my hydration backpack and have hubby drive me to the store to get some protein bars.
Physically I’m feeling ready but a little worried that I haven’t done any walking or running in the last few days. I did walk to the bus stop Tuesday, and I count some of my housework as cross training , so I haven’t been a total slug. I’m packing myself and getting lots of rest too. Eating all the foods. Eggs, bread, fruit smoothies, sweet potatoes, stuff like that. Carb loading is probably my favorite part of this!
I do believe I’m ready to kick some ass ay this race. Not in the sense that I’ll be fast, I’ll still be a back of the pack runner, but I don’t compete with others. I compete internally and I’m confident I’m ready to beat my first marathon time of 6 hours 59 minutes.
Tomorrow we’ll go pick up race packets and then I’ll get another picture for you with the complete set up. Now let’s do this!
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!
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!
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.
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 😉
Deaf and half-blind runner with multiple sclerosis
Little M.S. Runner 