Some days we get to feel like we are winning. Not that there’s any type of contest, or reward for this “winning”. I mean the kind of day where you know you’ll be going to bed pleased that you were able to accomplish what you set out to do.
Today sort of feels like that, and I’m rereading that statement above and cringing at how pretentious it sounds. All I’m really trying to say is I’m proud of myself. And I don’t always feel that way, so it feels worth mentioning. Today I went to the gym and tried the 30 minute circuit that I had been wanting to try but had been too self-conscious to do. I was just nervous that i wouldn’t be able to see the numbers or instructions and that people would see me fumbling around or staring so long at the signs and would laugh at me. But I did it anyway! And it seems I started a trend because when I entered the room, I was alone. By the time I finished the circuit, several more people had joined in. When you finally do something that you had been avoiding for so long for fear of being laughed at, it’s a pretty incredible feeling of accomplishment. To be bold and confident when you don’t normally perceive yourself that way? Definitely feels like winning. The feeling is the reward.
Also, and this will hopefully be addressed in a later post, I traveled with my white cane today and I have to make an observation. The city bus drivers are a lot more patient with you when they know you have a disability. I found that when I have the white cane out in sight, they actually wait for me to be seated before they start moving again. I definitely appreciate that. I have so much more to say about this topic but the story is still working itself out, so it will be awhile before I can fully report on it. Stay tuned for that!
Category Archives: Partial Blindness
2023 Bayshore Half Marathon
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.”
Wake up, Mindy
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.
Rainy days
It’s raining today. Storming, actually. It’s been awhile since we had a thunderstorm during the day like this. We’ve had a couple overnight, but those are no fun because I can’t hear the thunder. I don’t wear my cochlear implants overnight. Usually my daughter tells me all about the storms the next day because though she usually sleeps soundly, she is sensitive to the noise. That and she worries about lightning striking and all that. So it makes for rough nights for her, while I secretly envy that she can hear the thunder.
So. Today’s storm is nice. It’s dark and cloudy though, which makes me want to go back to bed (which I did) and stay in my pajamas all day (which I am). I’m also roasting a butternut squash to make soup, so the house smells like autumn. My sister and I have our annual retreat to the monastery this weekend, and this year we decided against planning an elaborate menu and instead are each bringing a homemade soup. We think between soup, salad, and snacks, we should be set for the weekend.
My plan for this year’s retreat is to get a big head start on my book. I want to read through the past five years of journals in order to get an outline or map of sorts of what I’m going to say. That’s a giant task and not something I feel like I can do sufficiently while I’m here at home. Distractions and all. I am very easily distracted.
I still feel like I have this nagging voice that tells me I can’t write a book, not one worth publishing anyhow. That voice I need to just keep telling to shut up. Lots of people less qualified than me have written books so I have no reason to believe that voice.
What else is going on? I started leading Financial Peace University this week for my church. We have a small group but it happens to be very diverse. People from every walk of life. Newlyweds, single, married with kids, empty nesters. It should make for some really interesting discussions as the weeks go on. I’m very excited to be doing this class. For one thing, I needed the refresher, for sure. But also it just feels good to be able to give back and serve God in an area I feel like He’s given me a passion for. I was a ball of nerves this first week, because my vision loss and difficulty hearing still give me great social anxiety, but everyone was extremely understanding and gracious. I’m confident it’s going to be a life-changing class for everyone.
Speaking of social anxiety, I’m also in a women’s weekly Bible study and yesterday was my first time going. I attended last year and loved it so much, I’m doing it again. However, I had a lot of trouble hearing people in the discussions as well as reading the materials they hand out every week. There’s not a whole lot I can do about the discussion because you can’t expect to completely retrain people to speak a different way just for that one hour a week, so I’m learning this is an area I have to accept not being able to hear everything. I just have to accept and be thankful for the words I CAN hear.
As for the lesson handouts, I had been scanning them into pdfs every week so that I could read them in high contrast on my computer or tablet. That was kind of a pain, but it worked well. It only occurred to me after the class had ended that I should have been scanning my answers to the questions as well, because every week I would get to class and struggle to read my answers during the class discussion. This year I am super excited because they offer the lessons and questions in pdf format, so I don’t have to do all the scanning! It may be hard for others to understand my level of joy here, because until you’re faced with the daily difficulty in seeing and hearing things, you just can’t imagine it. I know it’s something I took for granted, for sure. If you are reading this and you have fully functioning eyes and ears, will you please just take a moment to thank the Lord? Because not everybody has that luxury. It’s so hard, people. Not impossible, just hard.
Well, my squash is roasted so I need to go saute some shallots and garlic and get the soup assembled. After that perhaps I’ll do some crocheting. I’m on my third of thirteen afghans for each of the nieces and nephews. A perfect rainy day activity, wouldn’t you say?
Accident-prone
My husband says I get hurt more often than anyone he knows. I’m not sure if that’s true, but I certainly get hurt more than at least my immediate family. Christmas morning I burned my fingers. I was taking a pan of bacon out of the oven when I knocked off the oven thermometer. So of course I let my instinct to move it with my bare hand take over, and that lasted all of a half second before I dropped everything where I stood and proceeded to spew fudge words under my breath as I ran to the freezer to find cold things. Burns are the most painful things ever, y’all. All dern day I had to keep my fingers on ice or they would start screaming at me. So basically I was relieved of most of my planned kitchen duties, other than putting away clean dishes with my one good hand. Thank goodness my mother-in-law was there to save the day.
Then today I went to the hospital to have my monthly Tysabri infusion. All went well with the infusion, but then as I was rushing down the stairs to be sure my ride didn’t leave without me, I miscalculated the number of steps and fell down the last one or two. I’m not sure, it all happened so fast, but I think it must have been the last two steps that I missed because I twisted my ankle real good and I fell hard. I dropped everything I was holding as I went down, of course, and just laid there, afraid to move. I was looking up to see if anyone would come to help me get up. Two people across the way just stood and stared, but then eventually I was surrounded by employees from the building. A nurse offered to have me stay and get the ankle checked out, and a valet driver brought me a wheelchair. Even my paratransit driver came inside looking for me, and was able to help me into the van. I really wish I had the whole thing on tape because I think it would give everyone a good laugh. Graceful I am not.
It’s now several hours later and I’m wondering if I should have taken that nurse up on her offer to stay and get the ankle checked out. I kept my leg elevated the whole drive home and then I’ve iced the ankle periodically throughout the day, but my it is still pretty swollen and I can’t bend it. Ah, I guess I’ll just give it a little more time and rest and hopefully it will heal up on its own.
Winner, winner
Okay, so one of the things I had been struggling with is the fact that I can’t really share meals with my family the way I used to. I come from an extended family full of food lovers, and we do our bonding and make our best memories over a meal. So not sharing evening meals with my own immediate family was affecting me more than I had anticipated.
I don’t expect them to eat what I eat, and I don’t even have the desire to try to convince them to. I know it would be a futile effort. It’s certainly not something I came into overnight, so I couldn’t expect that of them. I did come up with an idea however, and that was to serve one fully vegan meal per week, one they would be most likely to enjoy. I ran the idea past them a few nights ago and while the kids were immediately against it, my husband was on board. That alone surprised me, but then he went a step further and told the kids he thought that since I do so much for them and I make compromises all the time, that they should be willing to do this for me. And then they all agreed, and I was in heaven. It was so nice to have their support in this. Not to mention, I fell in love with my husband all over again, for stepping up like that.
Anyhoo… ever since, I’ve been trying to find some easy vegan recipes that aren’t too off the wall for them, and I’m coming up rather short so far. Because they are mostly super picky eaters. I only plan to do one meal a week, so I’m not terribly worried. I’m sure between Pinterest and a good old fashioned Google search I’ll find plenty.
Tonight was the first night we tried an an all vegan meal. In order to ease them into this, and to show that I’m not just trying to introduce them to a bunch of foreign foods (think seitan and tempeh), I served waffles with strawberries and whipped cream, with fresh red grapes on the side. Waffles made with almond milk and egg replacer, and coconut whipped cream. They loved it, and we all agreed that it was delicious! I had never had the coconut whipped cream before, and I dare say it tastes better than the dairy version. Winner, winner, vegan dinner.
Oh, and also today I had a visual field test at my neuro-ophthalmologist’s office and it turns out my eyes have both improved! I can now see 51% with my left eye and a whopping 27% with my right.
It’s safe to say that today was a really good day. Tomorrow is infusion day, so I’ll get to relax in their new heated seats and sip coffee and read a book. I’m livin’ a glamorous life, folks. Envy me. I dare you.
A little sense of freedom
I’m trying to become a contact lens wearer. I used to wear them, years ago, but gave it up for some reason. So I figured it would be no big deal to join that club again.
I was wrong.
With my MS relapse and resulting vision loss in September 2013, I have a significantly unique challenge. While my left eye has the stronger prescription, the nerve damage left my right eye with a very small field of vision. My brain has adjusted since, so it doesn’t even pay attention to what the right eye “sees”. What normally happens when you close one eye is that everything you see shifts to the left or right, right? Well, that doesn’t happen with me. What I see with both eyes is exactly what I see with the left. Meaning my right eye is essentially blind. Where I’m going with this is, when I try to put a contact lens in my left eye, it’s jarring to see my finger coming straight at my eyeball, and it’s impossible not to blink. So I’ve been having trouble putting them in. A week ago Saturday I worked so hard to put them in, and then all day I was feeling frustrated with what I was seeing. I thought it was just because I was outside a lot, and I didn’t have the anti-glare feature that my glasses give me. That night when I went to take them out, I discovered there was no contact in my left eye. After feeling around on the bathroom counter, I found it. All dried up. I had to go back and get a replacement. Then this past Thursday when I took them out, I inspected them before putting them in the case, and noticed a small tear on the side of the left one. Strike two. I know I have to practice and find a system that works for me. The only trouble with that is that contact lenses are not really built for the level of practice that I am subjecting them to, apparently. Not to mention every time I drop the lens I have to fish around for it with my hands because even with the tint on the edges, I can’t see the lens because it blends in. I need high contrast.
All that to say, I ripped two lenses already, and was growing very discouraged. Because when the contacts are in, and I’m walking around sans eyeglasses, I feel so FREE! So uninhibited. It’s hard to describe the feeling, or rather the importance of the feeling. It’s like there is one less thing to worry about, if only for awhile. The literal weight off my ears is fabulous. The cochlear implants are there no matter what, so it gets crowded. With contacts, I can wear sunglasses come summer, I can run without having my eyeglasses slide down my sweaty nose, and I can swim with my kids and read lips and recognize faces!
I went back to the eye doctor today and she suggested getting some color contacts, which would be much easier for me to see, making the inserting process much easier and hopefully minimizing the risk of tearing the lenses. The only problem is that the colored lenses cost twice as much as the clear ones. That and the colored portion does seem to interfere a smidge with my field of vision. I’m wearing a pair right now with no prescription in them, just to try out.
So now all day I’ve been debating whether it’s worth the extra cost, and whether that smidge bothers me or not. I think the Smidge (I’m calling it that now, I may as well capitalize it) is very slight and I don’t really notice it once I get focused on other things. And after writing that last paragraph about all the benefits of contact lenses, I think I’m leaning toward going ahead and getting them ordered. I swear, I’m so indecisive at times I drive myself crazy. But I’ll give it another day or two just to be sure. That would make Wednesday my deadline for making the decision. So there, Wednesday it is!
How’s that for letting you in on my thought process? There were other things I wanted to blog about but they will just have to wait for the next one. Happy Monday, y’all!
A glimpse at regaining independence
I received approval today to use the paratransit service, and I am beyond excited. The service provides people like myself with rides to pretty much anywhere in the city. All I have to do is schedule the pickup within 24 hours, pay the fare, and off I go! I can apparently schedule online, which I tried already for two of my upcoming appointments, and I’ll probably call tomorrow to confirm that I did it right.
No more pulling my husband out of work for doctor’s appointments, dragging him and the kids out at dinner time for my support group meetings, and who knows what else? I can go on shopping trips, get groceries on my own (up to 8 plastic bags), even take the kids to the library or the museum on days off! Just dreaming of the possibilities is more excitement than I have had in a long time.
Be thankful for the independence you have, because it can be taken in a heartbeat. My optic nerves were damaged as they are in a matter of weeks. I used to enjoy taking trips, sometimes just driving for the fun of it. The second to last time I remember driving (and enjoying it) was when I went to the abbey for a weekend getaway with my sister in august 2013. Even then I should not have been driving. A week later I drove my kids to their first day of school, with one eye closed to reduce the cloud in my left eye’s field of vision, scared out of my mind and feeling reckless and over the top stupid for putting my children’s lives at risk. And that was my last time driving.
So there goes my Nascar dream. Is there a competitive arena for bumper?
Okay I got off track, didn’t I? Here’s the lesson: be thankful for your independence, whatever form of it you have. It is a gift.
Here comes the bus
I will start off this post by assuring everyone that #1 – my husband found my driver’s license, and it is still valid, so I was within my rights, and #2 – no one was harmed during the events of this story.
So. I walked the kids to the bus stop the last two days, and it has gone very smoothly. I was sharing this fact with my husband and I guess in the matter of sharing, I told him I would like to continue the daily procedure. But my crappy memory told me this morning that he had said, or the kids had said, that he would continue to drive them. So at 7:50 this morning I was freaking (I do that, it’s not pretty) because he was still in the shower and oh my gosh, they need to be at the stop in TWO minutes! No way, no how is he going to be out and dressed in time to drive them, and only Superman could get us there that fast on foot (or cape?).
What was a frantic Momma to do? Thinking fast, I grabbed my coat, keys, and purse, and the kids and I got in the car. And I drove the three blocks to the bus stop. We pulled up just as the bus rounded the corner from the other direction, making it JUST. IN. TIME.
I didn’t run over anyone, I didn’t hit any cars, I didn’t even run into any curbs. No harm, no foul. Daytona is not in my future, but maybe bumper cars??
Little M.S. Runner 