This week was a struggle. For reals. Not only was it my highest fatigue week, but I had appointments all week: neurology, therapy, infusion, and BSF (Bible Study Fellowship). The BSF was really the only one I was looking forward to, but with my fatigue being at such a high level, it was hard to enjoy. Can I just be really honest here? I have begun to forget why I signed up for this marathon. I’m so over it. Sure, it will be rewarding. I’ll be so glad I did it. No regrets. But I’m ready to get this thing done. So with that attitude, I was able to squeeze in some training.
Looking back, I don’t know how I managed to do this, but on Thursday afternoon – after I got home from my Tysabri infusion – I ran 2.5 miles to the local medical lab to get some blood work done, and then on the walk back home I swung by the pharmacy to pick up a prescription. Marathon training, disability style. Who says running is just for the young and healthy? This is tenacity at its finest, folks. Two workouts in one day. I got ‘er done.
Friday I rested, and then Saturday I ran some more. This photo on the right here is of a place I pass on my long runs. I never think to take a picture, but as I’m winding down my marathon training, it seemed like a good idea. This is a helicopter that was used during the Vietnam war and reminds me to be thankful I live in a country where I am free to run. God bless America.
So, since I’m officially tapering in preparation for race day, Saturday’s long run was “only” 12 miles. It’s a bit surreal, still, that ten years ago I was barely walking. And now I’m what? A runner? Able to casually run 12 miles and still be smiling at the end? To be up the next day NOT feeling sore and near-death? I’m fascinated with what the human body is capable of accomplishing. Fascinated that with slow and steady progression, it learns to handle hours of pounding on pavement. I am also astonished at the healing that has happened in my toes, ankle, and knees. And, I think most of all my heart. Oh, my heart. I am stronger than I ever thought I could be. I am ready to kick this marathon’s ass.
This week I traveled a total of 17.32 miles on my feet. Total marathon training miles, including the half marathon, is now 477.46. Three weeks until race day! I’m at the point of the process where I’m struggling to remember why I signed up for this, so I put a picture of myself running a race from last year on my phone’s lock screen. In the photo I’m sporting my bright orange deaf/blind vest so it’s a great reminder of my “why”. Why do I run? Put simply, because I CAN. Also, I could go on and on about how we can do hard things, and one of these weeks I might still do that, but for today we’re just going to leave it right here. I run because I can. Because God gave me the strength and led me to this place, and I’m going to honor Him by not giving up. He sustains me, truly. In life, and in running. All of it.
I realize all I’ve been posting are training updates. I do. I realize marathon training is challenging and can consume your life. It’s clear that’s what has happened here, but I’m comforted that the race is less than 5 weeks away and then I can rest again and resume focus on other things. But also, it’s only 5 weeks away and I don’t know if I’m going to be ready. Which I think is probably true of anyone training for a race this big. I just have to trust that what I’ve been doing is enough on race day. And where it might not be, I can make up for it with that inner grit and grace I keep tucked away for emergencies. My only goal this time is to finish faster than the first one, and I do think I’m poised to make that happen. (Because the first one was laughably SLOW, but I finished!) I’m learning so much about my body and my endurance through this training process. So without further delay, here’s this week’s recap…
Sunday – I can’t count the 6 miles I ran on Sunday because I was viewing them as “make-up” miles from the day before and already included them in last week’s totals. Whatever.
Monday – this was a gym day and I got a really good workout for my legs with the weight machines. Seated leg press, leg & calf extensions, seated leg curl, hip adduction, glutes, and a little bit of arm weights (I did not look to see what the machine was called, but it was much like rowing a boat.) This time I was able to get a ride home from the hubby since it was Labor Day and he was home from work.
Tuesday – Rest.
Wednesday – My original plan was to run on the treadmill for 90 minutes but I was having abdominal cramping, lots of GI issues, so that sort of stole my day. I did manage to walk 1.6 miles at dusk, however, so that was nice.
Thursday – I took a 2 hour morning nap and the rest of the day listened to running podcasts for motivation. I hesitate in sharing this because it isn’t in the training plan, but I think it’s important to note that sometimes you have to listen to your body when it tells you it needs the rest. I’m just afraid my body’s ultimate intention is to keep me from running this race. And running podcasts do help to motivate and educate me, so I don’t believe this was a day wasted.
Friday – This was the big day. The weather was perfect for a long run of 22 miles and I went to bed the night before fully prepared. I had my hydration pack cleaned and filled, I had my gu’s and gels in the pockets of my backpack, and all my clothes and other gear were laid out. I left around 7:30 am, just after the kids left for school. It was misty and overcast and around 60 degrees Fahrenheit. Perfect! I was having so much fun on this run. I had listened to an interview with Martinus Evans, a back of the pack supporter, and he was recommending that we run our training runs slow, and he described it as “sexy pace” which I thought was hilarious. So every time I would notice I was speeding up too much I would say to myself, “Sexy pace, Mel, sexy pace.”
I think I must have been taking the sexy pace too seriously, swinging my hips too hard maybe, because at 7.5 miles that sharp pain in my right knee appeared, fierce and unrelenting. I had decided that day not to run with my knee strap, but I had packed it so I put that on, hoping it would relieve the pain. It did not. I sat down and called my sister, a veteran runner, and asked for her advice. She encouraged me to try walking, and at least that would be time on my feet, but ultimately listen to my body. I walked for another 1.5 miles, and the pain was coming and going, but never going for very long. At 9 miles I stopped and decided I was done for the day. I made a few calls and the first lucky person to answer was my husband, who graciously left work to take me home.
I took the above photo just before I decided to call it quits. I was walking, still in pain, and so happy to see that red house because it meant the public park I had been anxious to reach was just on the other side. I don’t know if you can see the red house, but it’s to the left of the two white houses. The park on the other side is the hub of our city’s local trails and I was really looking forward to running around the lake there.
Once I got home I ate some lunch and got to taking care of my knee. I put on my compression knee brace and kept that leg elevated as much as possible. Going up and down the stairs of our two-story home was painful and slow. I sat in bed, researching what I could possibly do to make this better and avoid it happening in the future. I came across some discussion about the run-walk-run method that I use, and discovered I really wasn’t doing it right. My intervals were running for 4 minutes, walking for one. But according to Jeff Galloway, the perfecter of this method, I shouldn’t be talking walk breaks longer than 30 seconds. And based on my pace and fitness level, I needed to look at a much shorter running interval. I read a comment from another runner who said she runs 60 seconds, walks 30, and that is what has kept her from her knee pain, so I thought “why not give that a shot?”. I changed the settings on my running watch and resolved to try it, once the knee pain was gone, of course.
And do you know what? I woke up the next day with zero pain. Not in my knee or anywhere else for that matter. It was no small miracle, if you ask me. So, I decided to get out and run again. I didn’t know if I could make up the 13 miles I was short the day before, but I wanted to see how the shorter intervals would work for me, and I would pay attention to what my body was doing. I stayed around the neighborhood this time, in case the whole plan went sideways. I could not believe what a difference the shorter intervals made. Before I knew it, I had knocked out 7 miles and felt like I still had a lot of gas in the tank. I would have gone for more but the temperature was rising and I didn’t want to push it. Plus on that 7th mile I thought I felt a whisper from my knee telling me it needed a break.
Now, I’ll be honest. I’m still pretty freaked out about how far I’ve had to stray from my training plan. I feel strong, yet I still have doubts I’ll be ready for this marathon in *gulp* 34 days. Even though I’ve been running for seven years it still feels new to me. I have learned so much but there is still so much more to learn. I guess you could say my faith was in the training plan, and now I’m having to redirect the source of my faith. Sure, ultimately my faith is in God, but I am a pragmatic and I have a healthy regard for the physical world and its limitations. Read: my physical limitations. Which, to be fair, are constantly changing and amazing me. I know that God has been the one to empower me to continue building a stronger heart, stronger legs, stronger lungs. I still remember needing to use a walker to walk, and I don’t ever want to forget that. Because while I’m trusting in God to keep me going, it’s important to respect where I was and realize that’s always still a possibility. Because M.S. is a permanent part of my life, unfortunately. And if I ever need motivation to keep racing, to keep running, that is it. That is my WHY. I’m doing it now because I CAN, and that may not always be true.
For those of you following along, I ran 17.6 miles this week for a total of 240.29 miles marathon training. Add that to the 193 miles I trained for the half marathon in May and you have a total of 433.29 miles banked for the upcoming race on October 15.
This week, again, did not go as planned. But I still made a lot of progress and I’m proud of myself for what I’ve accomplished over all these years of running. Over the past 10 years I’ve gone from barely walking to not only becoming a runner but also running ridiculously long distances. I’ve had to really bring the memories of my major MS relapses to mind in order to motivate myself to keep going, despite being unable to follow the plan to the letter. I tend to forget why I signed up for this marathon, why I committed to all this training. I wonder if I’ll be able to continue, if I’m physically capable. And then I get out there and run and I’m reminded of how strong I’ve become and how important this has become.
So here’s the recap.
Strength training: I did not have a chance to get to the gym for leg workouts, but I managed to get a lot of squats in at home in between scanning old documents. I’m on a decluttering kick since getting my hutch refurbished. Creativity wins!
Run #1: I ran on Monday, just a quick lap around the neighborhood. I went down every cul-de-sac and street, which turns out is a total distance of 2.24 miles. Handy information to have sometimes. When I returned home I hung out with the dogs on the deck, which they love. Our golden retriever, Punky, loves to lick all the salty sweat off my skin! I don’t let her, but she tries. Shown in the photo below, I was trying for a sweaty selfie but she was more interested in licking my face.
Run #2: Timing and weather and me not wanting to get out of bed early enough meant I was back on the treadmill. A planned 75 minutes for a total of 5.02 miles. On my last 10 minutes or so I decided to run through the walk interval. I was feeling strong and anxious to finish. The cool thing was that a song I had just added to my playlist that morning, Run Like a Rebel by The Score, came on just as I started my last interval. It gave me a boost of happy feelings so I finished the run on a good note.
Run #3: Welp. I was gonna run 20 miles. Really didn’t want to. My husband helped talk me up some and gladly offered to drop me off at the gym. I had learned you could change the timing on the treadmills, so I was hoping to run the whole 20 in one session, but found once I got there that you could change the timing, but the max was 99 minutes. Just like my treadmill at home. Oh well, at least they have better displays there. And way more fans blowing cool air.
I started, ran my first 99 minutes. Actually, they allow a five minute cool down, so I just sped the treadmill up and went for an even 100. Took a photo, marked my time, refilled my water bottle, pulled out my protein bar and an extra pack of gummy electrolytes, and started a second session. I started the second session feeling awesome, rocking out to my tunes, and made it 52 minutes. Out of nowhere it was as if a razor blade or sharp piece of plastic had magically appeared in my shoe. I had to stop immediately. For several embarrassing seconds I was wondering what had happened. Then it dawned on me… a blister had popped on the side of my middle toe. See, I’ve been running with my big toe buddy taped to my second toe. That buddy tape rubs against my middle toe. After 10.1 miles, I guess it was too much friction. I went to the locker rooms to inspect the damage, shoved some toilet paper in between my toes to cover the open wound, and walked gingerly back to the treadmill. I tried to walk, then slowly jog, but it was far too painful. After much internal deliberation, I decided I needed to call it quits. I called my husband to come pick me up and resolved to give my toe a break and get the miles in some other time. Again.
This time, however, I wasn’t quite as disappointed about missing the miles. Because I was paying attention to what I was actually able to do. I ran 10 miles Saturday and I still had life in me. I still had energy and strength available to keep running if it hadn’t been for the popped blister. And now I have something new to learn: how to prevent and care for blisters! Which is something I need to know. Because as my sister had shared with me (ironically, just the day before) something she heard on a running podcast: “Didn’t you think your feet were going to hurt?” Yes, yes they will. Deal with it and move on, sister. We’ve got more miles to go.
This week I ran 17.71 miles altogether. I also did a whole lot of squats, some good walking, and pulled a thigh muscle playing Pie Face (I startle way too easily). Total half marathon miles, 193. Full marathon miles, 161.98. Grand total full marathon miles to date: 354.98. We’re still moving forward folks! One step, one punch, one round at a time.
I left yesterday’s marathon training update on a gloomy note. I was still disappointed in myself for not being able to complete the planned 17 miles. But I’ve been doing a lot of thinking, and reading. I get these articles aimed at the MS community, and two came in the last few days talking about heat intolerance and multiple sclerosis. This is not a new concept to me, I’ve known all along that as someone with MS, I need to be careful about the heat. I guess I just sort of forgot, you know? Because of the damage MS has done to my central nervous system, my body is more sensitive to heat. Even a slight increase in core body temperature can cause my nerves to misfire, leaving me with pseudo flare-ups, fatigue and muscle weakness. So. The fact that I am attempting to run all these crazy long miles in 70-80 degree heat is a little bit foolish. No, it’s more than that. It’s pretty damn stupid. Probably dangerous. Definitely a bad idea. So I’m giving my overachiever self a little slap on the wrist, and telling her to find a different way to accomplish her training. It can still be done. We have access to treadmills and fans and air conditioning. Sure, it’s not as scenic or entertaining, but it’s also only temporary. Summer is quickly coming to a close, and then we can get back out and run on those lovely trails. Okay, Mel? Work smarter, not harder. Now carry on. Lecture over.
Lest you think all I do and think about is running, here I will attempt to talk about something else. I do other things. I fold laundry, cook food occasionally, feed the dogs. Oh, and I read, I crochet, and I write. And nap a lot of the days. That’s all wildly monotonous, but sometimes exciting things creep in. This week the exciting news around here is that I am refinishing my secretary hutch. And when I say I am refinishing, I mean I chose the paint color and drawer handles, and then mostly sat back and watched while my friend did most of the work. She loves this stuff, and she’s a whiz at it. I did help with putting on the first coat of paint, since it would be covered up anyway with a second coat and wouldn’t matter if I messed it up. I have never been great at painting, even before I lost my vision. Now with a limited visual field and atypical color blindness, it’s akin to handing a six year old a paint brush and saying, “just do the best you can!”
Below is an early progress photo. We had started to paint the main unit and saw that it was coming apart in the middle. Which was fine, because it is actually two separate pieces held together by wooden dowels. So taking the top section off turned out to make it much easier to finish the painting.
I’m so excited to see the finished product and get it all loaded up and organized with my office items, but it will be a couple weeks before you’ll see that, since I’ll have to wait until the paint has fully dried and cured before I can put things on and in it. It’s going to be so worth the wait. I’ll be sure to post the before and after photos for y’all so you can see the transformation. It’s going to be magical, for real.
The other project I’m working on (again) is my memoir. This is still something I strongly feel a desire to finish, and I’m making some great baby steps towards that goal. Much of the process (perhaps all of it) is expected to be tedious so I’m not sweating the details and I’m taking my time. One of the things I’ve been struggling with is how to organize all my drafts and notes. A lot of the strategies I would have used in the past won’t work now, because I can’t read normal print, I can’t read on white paper, and I can’t see typical colors or highlighting. So I have had to come up with new strategies that work with my visual impairments, and that’s been frustrating. However, this week I was reminded of an app I use, Evernote, that allows me to move my notes into folders, and I can view it in high contrast and I have all the searching and sorting functionality I could want. So that’s been exciting for me. I’m taking some inspiration from the show “Hoarders”, when they take all the clutter out of the house and move everything to sorting tables before they decide what to put back in the house and where. So I’m moving and sorting my notes into “sorting tables” and feeling positive about the progress. With any luck, by the time I get my hutch back I’ll be ready to do some serious writing!
That’s all for now. I hope you all are having a great week! *Shalom*
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.”
Sometimes God sends me little messages to remind me He loves me and that He’s thinking of me. Usually it’s a bunny running across my path while I’m running in the neighborhood, or a deer stopping long enough and close enough for me to see him. I get giddy when I happen to see these things.
Today I spotted this heart shaped water spot on the driveway after taking the trash bin to the curb. Only today I felt less giddy and more comforted. Like God knew I was having a rough couple of days and could use the reminder that He’s always – still – here with me. This disability sh** is a full time job, man. And this week I am feeling beat down. Tired. So this little “love note” was a welcome distraction and comfort.
2 Corinthians 4:8-9 ESV “8 We are afflicted in every way, but not crushed; perplexed, but not driven to despair; 9 persecuted, but not forsaken; struck down, but not destroyed;”
I titled this as if I do “end of week” updates regularly. Y’all know… I do not. I’m far from regular. But, I just put a cheesecake in the oven and felt like kicking back and writing about some of the exciting things that have been going on with regards to MS and running. I may have mentioned, I’m training for another half marathon. It’s at the end of May, and I’m running it with one of my best friends. It’s been challenging getting our training runs in during the winter but since we are both committed to this race, we are able to hold each other accountable (though, I’ll admit, it’s mostly her keeping me accountable. If I had my way we would be doing far fewer long runs.)
Anyway, during this training I was noticing, and my friend was able to see as well, that my left leg had become increasingly “lazy”. Lots of scuffing of the toe, slapping of the foot as it landed, etc. I think this had started a long time ago, but I hadn’t bothered with it since I wasn’t doing as much running. I talked to my neurologist about it at my last regular check up and she recommended I get some physical therapy to help strengthen those lagging muscles. So I’ve been going to physical therapy for a couple weeks and already I have noticed improvements. The first was that the PT noticed my stride when I run is very short, and she recommended lengthening that stride to get more use of my hamstrings and quads. I tell you, it’s definitely harder to run with that longer stride, but even with that I’m seeing my pace come up. I’ve shaved almost a minute off my short distance pace since beginning our training, without really trying.
Another improvement I’ve seen is that my left leg seems to be getting more involved in the walking process. See, normally I swing my body a little to give that left leg some extra momentum. Since doing these PT exercises, that’s changing. The PT has hooked my leg up a couple times to a stim machine to activate those muscles and I know that’s helping to get them working properly again. I’m having to retrain my brain to talk to those nerves that operate my leg and foot. It’s fascinating and exciting at the same time.
I’m still struggling with fatigue; that hasn’t changed a whole lot. However, I’m learning to change my mindset and be kinder to myself about it. I remind myself that it comes and goes, and that when it comes, I just need to rest, enjoy the slow down period, and ask for help when needed. My teenagers have been real troopers with that, so I’m grateful to have them around.
We’ve had a lot of illness and health issues going around our family for what feels like forever, but with spring comes sunshine and warm weather and I have hope that healthy days are right around the corner. I also hope that for you, dear reader, that you have healthy days and sunshine. May God bless you! Until next time…
This is another story that took place in late 2013 when I was still very new to vision loss and hearing loss. I have quite a few stories packed away, and plan to bring some out here on the blog, once a week or so. This one is quite funny to think about in retrospect but at the time it felt quite terrifying…
Our kids were gone to Grandma’s for the weekend (my mother-in-law) and I woke up in the middle of the night to use the bathroom. For some reason I used the one in the hallway, rather than the master bathroom. I’m not sure why, and it doesn’t really matter, only that this wouldn’t have happened otherwise.
Remember now that I can’t see well, I’m completely deaf, and all the lights are off so it’s pitch dark. I made it to the bathroom without issue, but when I turned off the bathroom light and stepped into the hallway I was rather disoriented. I knew enough to turn to the right, having lived in this house for fifteen years, but then I kept walking forward into my room. Or what I thought was my room. When I didn’t find my bed, I panicked. Legitimate, full on panic. I was reaching around trying to discern where I was but I had no idea. I was turning and flailing expecting to find our closet, a bed. a dresser, anything that would register familiar.
And then I started screaming for my husband. “Mike, Mike! Help! I don’t know where I am! MIKE! I couldn’t hear myself, or any response from him, of course, so I was just hoping I was screaming loud enough to wake him, and then I would wait a minute for him to come to me. When he didn’t come, I would start screaming again, to be sure he would know where to find me.
Did I mention this was an 1100 square foot ranch with three bedrooms? Not an escape room or corn maze. Not rocket science.
So this screaming and waiting went on for several more minutes, maybe 10 or 15, until I decided it wasn’t working and I was just going to have to sleep right there on the floor, wherever that was. So I sat down in defeat. That’s when I felt the rug, and I realized then by the texture that it was the race car rug in my son’s room. Right next door to mine. I was so relieved I didn’t even bother laughing at myself. I’ve had plenty of time to do that since. I just got up, felt around for the doorway I had just come through, and found my way to my bedroom and safely into my bed. I laid a hand gently on my husband’s chest, wondering why he hadn’t come to my aid. I could feel the vibrations; he was snoring. He hadn’t even heard me screaming. He slept right through it. I didn’t tell him about the incident until five years later. He wasn’t even sorry, can you believe that?
This journey I’ve been on since 2013, adjusting to life with disabilities, learning how to be me with limited vision and deafness, has taught me so many things, but one of the biggest lessons I’ve learned is that God isn’t always (almost never, if you ask me) going to tell you His plans. He may be keeping you in the dark about all the details and sometimes you just have to sit and wait until He shows you where to go, one grueling step at a time. And no matter how lost you feel, you might just find you’ve been in the right place all along.
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.
Deaf and half-blind runner with multiple sclerosis
Little M.S. Runner 