My visual impairment is unnoticeable to others, usually. And then there are times you are trying to box up your own leftovers and it becomes comically evident that something isn’t right. I was out for breakfast with a friend and had ordered a delicious breakfast burrito. I was only able to eat two-thirds of it because it was enormous. So naturally, I asked the server for a box to take my leftovers home. No problem, he said. Then he quickly came back and set a foil box on the table. Gone are the days where they box up your leftovers for you, which I am a-okay with. However, I struggle a bit with doing it myself. I shoveled my leftover burrito into the box and then felt around, searching for the lid. I asked my friend, where’s the lid? With an amused smile, no doubt holding back a hearty chuckle, she said, “It’s inside the foil. You put your burrito on it. May I?” She says this as she’s motioning toward the box to offer to fix it for me. The lid was a transparent plastic that sat inside the foil box, and I had just placed my food on top of it, believing I was setting it directly on the foil. Thankfully the lid was upside down, so all she had to do was flip it over with the burrito into the foil dish and all was well.
After that slight debacle, the server came back and patiently waited the 38 minutes it took me to read the receipt and pay using the handheld computer thing. Because I am now a slow reader. It takes time for me to locate and properly identify letters and numbers, especially on a white screen. I want to be sure I get it right, especially when I’m authorizing someone to remove money from my bank account.
My visual impairment is both a loss of field of vision and an atypical color blindness, so I can’t really decipher things unless they are bright and highly contrasting colors. I read an article earlier this week that the color blindness is actually a common symptom that comes along with optic neuritis, which is what I have. Optic neuritis is very common with M.S., but it usually resolves after a short time period. In my case, it never did. It showed up in September of 2013 and took up permanent residence in my life. An unwelcome guest that I continually work to make peace with. Being so visually impaired really tries my patience most days, but this morning I was able to laugh at myself. It’s exhausting and utterly ridiculous and sometimes laughing at myself is all I can do. It happens a lot, to be honest. So I’m going to try to remember and share more of the stories here when they happen and hopefully, we can laugh together.
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.
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.”
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.
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…
I ran another race! This one was kind of special because my plan was to run it solo. Back in May I had a nice conversation with the race director and she made me feel really confident that it was something that I could pull off. And that if anything were to happen to me along the course, I would be well taken care of. The Capital City River Run is a race right here in my hometown. They offer a couple different distances, with the longest being the half marathon. That’s what I ran this weekend. The people involved in this race are incredible and there’s just something magical about running around this city that holds so many memories of my life over the past 25 years.
Hanging out with the back of the pack, waiting for the countdown. I am super grateful for the enthusiastic and supportive pacers.
To be honest, right now, four hours after I finished running, I’m wondering why I even do this to my body. I ran a strong race, my legs were holding up well, but a short time after it was over, I started feeling really ill. Stomach upset, nauseated, and lightheaded. I’m feeling a lot better now after a nap and a shower, but my body is still questioning my life choices.
The bottom line is, I had FUN. And I’m so glad my husband reminded me of that when he dropped me off that morning because I was so nervous and scared that I was forgetting the whole reason I was there in the first place. To have fun. Running is fun. People who run are fun. And when those inevitable hard days come, it helps to remember you ran some really awesome races that were hard to do but you ran them. You set goals and you didn’t give up on those goals. You met people along the way who cheered you on even as they were battling their own struggles, fighting to finish their own races.
And fast forward; it’s now Tuesday. I had to pause writing this post on Sunday because I was just so tired. And I didn’t finish it on Monday because Fatigue. Level 10 fatigue, all day Monday. I wasn’t in so much pain as I had expected to be in. Just a bit of hip pain on the right side, but I was definitely feeling more fatigued than I had anticipated. Y’all, I could barely hold my head up sitting at the kitchen table to eat my breakfast. All day I was struggling to move. Fatigue is the most common symptom of MS, and I’ve learned to avoid it most of the time by keeping up with regular running. This race, however, kicked me right in the rear. Leading up to the day of the race I had already decided to dial it back on the long races, because I had so much trouble keeping up with the training, but Monday, that decision was cemented in my mind. I am super proud of my accomplishment, but I need to take it easy for awhile. My body made that glaringly obvious – the debilitating fatigue that keeps me from doing basic, simple tasks is just not worth it right now. Maybe down the road I’ll set my sights on another pie in the sky goal, but for now I am ready to do some serious resting.
This was Sunday, post-nap. I ran 13.1 miles and did not die!!
Some things that are easy and simple for most people are things that became scary for me 8 years ago. When I suddenly lost my hearing and then half my vision that fall of 2013, it was a drastic paradigm shift for me. The cochlear implants help a lot, but they don’t provide me with 100% normal hearing. And nothing can be done about my 60% visual field loss.
I still remember vividly standing in my kitchen all those years ago, terrified to cut an apple. I couldn’t see much and I was so unsure of myself. I feared I would cut off one of my fingers. However, after some encouragement from a friend who assured me I could do hard things, I took what felt like a massive risk and I cut that apple.
I can do hard things.
I’ve been working very hard these past 8 years to find some sense of normalcy in my life. There are still a lot of things I cannot do, or can only do in a limited capacity. I cannot drive or cut straight lines. I can’t seem to determine north from west anymore. I get lost very easily. Hearing and reading are both extremely exhausting because they take so much mental effort.
But what I’ve recently learned I can do is walk half a mile to the bus stop. I can get on the bus, pay the fare, sit down, and listen to my phone with my cochlear implant Bluetooth connection to be notified when my stop is approaching. I bought my first bus pass several years ago and I didn’t use it for the first time until this year because I was afraid. I had never ridden the bus before, and I was afraid I wouldn’t be able to hear or read the cues and I would miss my stop, get lost. Not know how to get home.
But then I remember that apple and am reminded that I can do hard things.
My first trip was a couple months ago with my kids, before summer break had ended, and they were there as a safeguard to be sure we got off on the right stop. My second trip was last week with my daughter, who was a huge help calming my nerves. She viewed it as an adventure, and was not worried at all about getting lost.
My third trip was today and I went alone. All by myself! It seems silly to me that I get such a sense of achievement and excitement at riding the bus by myself, because regular people do this every day without issue. However, I have to remember that the functions I have lost between my vision and hearing, do make this more of a challenge. Riding the bus was an entirely new thing to me, so I didn’t have any old habits or familiarity to draw from. It took a lot of courage for me to take these trips and I should not discount that. This was hard for me, and I did it anyway. This was a fear conquered, a giant slayed.
Mindy rides the bus!
I can do hard things, and so can you! What hard thing are you avoiding? What’s holding you back? I dare you to stare that hard thing square in the eyes and just do whatever it is.
It’s been rainy this week, some storms, and I was forced to run on the treadmill yesterday. Six miles on the treadmill was misery. Seriously. The treadmill has some advantages, but mostly I hate it. It’s a last ditch effort to get the miles in.
So I was hoping and praying that the rain would let up enough for me to run my 12 mile long run outside. I had all my gear packed up the night before: safety vest, hydration backpack, waterproof cochlear implant cover, clothing, shoes, etc. I set my alarm and when I woke up it looked like there would be no storms and very little rain for the portion of the morning I had available to run. Hurray! But as I was getting ready I felt a growing trepidation. I would only have one ear to hear with, and not so well because the waterproof cover makes sound a little muddled. Also, the hydration pack and safety vest are not the most comfortable things to wear while running. However, function trumps comfort.
I set out on my run and urged myself forward, despite my legs telling me they wanted nothing to do with this trip. It always takes them a mile or two to get warmed up. After 2 miles though, I was feeling strong and just trying to keep my pace slow and steady, knowing I still had a long way to run. These marathon training long runs are not so much for speed as they are for training your body to be in motion for a solid length of time and distance.
Having been discouraged from the start, I was listening to my Kirk Franklin radio on Pandora to keep my head in a positive space. I kid you not, the first two songs that played were about rain and shelter from the storm. I hear you God, thank you for coming with me on this run.
Then, about 4 miles into my run, on the local trail I was passed by a familiar woman walking her dog. “Beth, is that you?” (Remember, I can’t see full faces) It was my pastor’s wife! She lives nearby so it wasn’t surprising to see her, just surprising that we were passing the same spot at the same time. We stopped and chatted for a few minutes and were on our merry way, but it turned out to be the heart warming boost I needed to finish the last 8 miles of my run! Because those last 8 miles – actually the last 4 in particular – were brutal. I could feel my muscles trying to seize up and my stomach was rumbling with hunger. I did a lot more walking than I would have liked, but I got it done. I finished what I set out to do. And next week I’ll get to do it all over again!
Halfway done, not dead yet
Deaf and half-blind runner with multiple sclerosis
Little M.S. Runner 