Week 2 is a wrap! I forgot to report last week that I had run a total of 12.48 miles, so there you go. This week I had two midweek runs and today’s long run of 11 miles, for a weekly total of 18.47 miles and a grand total of 30.95. We’re not counting the training I did for the half marathon, which is actually kind of relevant so I may go back and tally those miles. It’s important to understand that you don’t typically start a marathon training plan running this many miles. It really depends on your fitness level. This particular plan I’m following, I jumped in at week 8, because I had just completed the Bayshore half marathon and knew it wouldn’t be much of a stretch for me.
I had no issues with my midweek runs, and none with the 11 mile run either. But I’ll talk about my long run anyway, because isn’t that why you’re still here reading? One of the things I’ve really been struggling with is to slow down. All my reading and research from the experts says to train slow. Jeff Galloway says to run at a pace two minutes slower than usual, and that’s been challenging! Its so counter-intuitive, but running slower builds up the same endurance as running faster, but without the added risk of injury. There’s so much science behind this method so I’m doing my best to follow it.
I started this run not really wanting to. My legs in particular needed a lot of warming up, and I needed some encouragement. It was in the first quarter mile that I saw a birdie standing in my path. Then, as I approached, he hopped to a nearby rock, and then another rock, and then a branch, each time looking back at me as if to say “Let’s go! Are you coming? I know you can do this.” And then, a few seconds later, I saw a bunny cross the path right in front of me to hide under a tree. I freaking love bunnies, and we have a lot of them living in our neighborhood. Every time I see one while I’m out running, I smile and thank Jesus for that gift. So that was a nice start to my run, and in moments of boredom along the way, I thought back to my birdie and bunny friends and it helped keep me going.
When I approached 8 miles I was starting to feel fatigued, but my legs still felt strong. When the weather gets hotter, running gets harder so you just have to stay properly hydrated and slow down a bit more. Let go of those expectations and just keep moving. I was equipped with my hydration backpack, so I just kept sipping that at every walk break.
When I had two miles left to go I was really starting to struggle. I had been talking to myself since mile 8, telling myself I could do this, I wasn’t giving up, one step at a time, etc. etc. but after mile 9 my legs were starting to tell me they were done. I trudged along, not discouraged because I knew I was still building endurance no matter how slow I was going. For safety reasons, I walked most of the 11th mile. There was a lot of uneven sidewalk and I knew my legs and feet weren’t going to lift the way they needed to navigate those obstacles. So to avoid tripping and falling, I just walked. And then when I was back on the street with fewer cracks and holes, I ran again. That was reassuring to see how my legs responded to the rest (walking). A little time to rest and they were ready to get back to work!
I’m still enjoying running, especially in the early miles of these long runs, and in the later miles I have ways of keeping myself motivated. I remind myself of how far I’ve come, how much God has blessed me through this running journey. And down the road when the miles are adding up and I’m wanting to quit, I’ll read some inspirational stories and watch some Rocky movies to remind me to never give up.
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 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…
Half marathon training is in full swing! Between winter weather, sickness, and just plain busy lives, it’s been a challenge to get these weekly long runs done, but we’re still at it! We’re up to 7 miles and are keeping a pretty decent average pace. To be honest, we are trying not to care about the pace. Just want to focus on building up that mileage without injuring ourselves. I have some hip and knee pain that’s lingering after a short run last week, where I know I ran too fast, so I need to be more careful about that.
My left leg is still an issue that I’m not sure there’s a solution for. It’s weak, yes, but I don’t know if making it stronger would make a lot of difference. Because when it’s tired, it simply doesn’t respond. At the end of most of these long runs I’ve had to lift my leg to get into my friends van. So I suppose I should count myself lucky I haven’t fallen during a run **knock on wood**. I do hear my left toe scrape sometimes and I can definitely hear how my left foot slaps on the ground when it lands each step. Over all these years of running I seem to have found a running form that works for me, but I always wonder if I could improve.
We had to switch the days we do our long runs so it just worked out that I also had my monthly Tysabri infusion this morning. I wore my running clothes to the infusion and had my friend pick me up when I was done and we headed straight to the trails to get our 7 miles in. It made for a long day and my Garmin says i only got 5 hours of sleep, so you can bet I’ll be napping as soon as I finish this post!
I have a 5k coming up that I’m excited about! It’s for pi day, math nerds know… 3.14. And guess what you get at the finish line? Pie! I love me some pie, especially after running 3.14 miles (yes, they adjusted the length of the race, gotta keep with the theme, of course). I have a couple other friends running so it should be a fun time.
Well, that’s all I have to say about running… for now. Peace out, homies.
This is just getting really old, so I thought I would tell you all about what it’s like, while I’m in the thick of it. I know it’s not going to be like this every day forever and ever, based on my history with MS, but Damn. It’s hard to see the forest for the trees right now. Is that the right phrase? I don’t know, my brain’s low on gas right now…
The most common symptom among MS sufferers is fatigue, and that is what I suffer from the most. I’ve learned to adapt and live with the hearing loss and the vision loss, and the weakness in my left leg, but the fatigue is the Beast I can’t seem to tame. It causes the most trouble the week before my monthly infusion, presumably because my body is running out of the medicine coursing through my veins. The problem is, once I get that infusion, I don’t get some magical burst of energy back. It just sort of slowly creeps back to a manageable level.
I have recently started charting my daily fatigue levels to see 1) if that fourth week after my infusion truly is when I’m at my highest level of fatigue and 2) how long does it usually take to get back to a functional energy level. I’ve just started charting, so it’s way too soon to have any usable data, but I’m hopeful that after a couple months I’ll be able to use what I’ve learned to plan my days better. If I can have more reasonable expectations on myself, than I can stop getting so frustrated.
Today, for example, I started out the day at about a fatigue level 6, on a scale of 1-10, 1 being plenty of energy for everything and 10 being flat out, unable to move. I went to Bible study, ran a quick errand, and came home and took a two-hour nap. Caffeine has almost no effect on me, so coffee is purely for looks. When I woke up from my nap the fatigue was actually worse, at an 8, so I went back to sleep for another hour. Not because sleep helps, but because what else is there to do when it’s such a struggle to move? I could watch tv or read but even my brain is fatigued so I would really just sit there feeling like a vegetable. The beautiful unconsciousness of sleep shields me from falling into depression.
I feel like I let down my family when I have to back out of activities or delay promises I’ve made, but they have yet to complain. In all honesty, I think I’m the only one bothered by this fatigue. My family and friends are always extremely gracious and understanding of me. I need to be just as gracious and understanding of myself. Because this is just a string of bad fatigue days, and they’ll be behind me soon enough. Until they are back again, of course.
***After I’ve had some time to think about this day, it occurred to me that maybe going back for that second nap was the wrong move. Maybe it would have been better if I had gone for a crappy run instead. I was scheduled to run 1.5 miles according to my current training plan, so I had every good reason to do it. After we had dinner tonight (a late, late dinner because my son had wrestling), I bit the bullet and got my miles in on the treadmill. It was hard to start but I kept with it and I’m glad I did. So, I’m going to try to remember that next time this beast rears its ugly head.
Oh! And speaking of my current training plan, I have another big race I’m signed up for, with a fellow friend who is crazy enough to run it with me. It’s a half marathon, and it’s happening at the end of May (because we’re only half crazy, get it??). This week is our first week of training, and so far, she’s doing better at staying on task than I am, but I feel like I gained a little momentum by squeaking out that treadmill run this evening. So here we go, wish me luck!
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 😉
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.
I mentioned at the end of my last post here, that I thought it was the steroids that were affecting my vision. As it turns out, it was not the steroids. What I had started to notice was that things looked blurry or foggy. It didn’t seem to really bother me until I was driving home from a weekend out of town with my sister. I remember closing my right eye for the entire drive home, because it seemed to help. I do realize in hindsight that isn’t the safest way to drive. I should have known this, given a previous experience with wearing an eye patch, but that’s for another post to come.
This was mid-September of 2013, roughly a month after my hearing loss. I still couldn’t hear much of anything, but I do remember blasting my music really loud in the car, so I must have still retained a small level of hearing. Not enough to be functional, unfortunately.
I had just finished a round of intravenous steroids the day I left for this trip, which is a standard course of action for MS relapses. At this point I had steroids injected into my ears, taken orally, and infused intravenously. None of it was curing my hearing loss. It may have slowed the progression of my vision loss, but did not stop it completely. At the peak of my vision loss, I was left with a VFI (visual field index) of 60% in my left eye and a measly 20% in my right eye. If you’re doing the math, that’s a 60% overall loss of visual field. Meaning I can only see 40% of what everyone else sees. And there’s no order to it. The blind spots are scattered, as if someone had taken a completed 1000 piece jigsaw puzzle and randomly removed 600 of the pieces. You might still be able to tell what’s in parts of the puzzle, but you never get the whole picture. That’s my new literal worldview.
I can no longer drive, and I have an extremely difficult time reading and writing (sadly, those are three of my favorite activities). I’ve had to make adjustments, millions of tiny little adjustments, to make life feel normal again. To feel useful. Capable. Whole again. Rehabilitation is a long, slow process. I’m still working at it but you can bet I’ve come a long way since that fateful fall season of 2013. This was just the beginning…
Deaf and half-blind runner with multiple sclerosis
Little M.S. Runner 