Category Archives: Visually Impaired

Faith, Family, Friends, Multiple Sclerosis, Photos, Running, Visually Impaired

Gazelle Girl 10k 2019

Leave a comment

I’ll be honest, I’m not even sure where to start with this post. I had a lot of thoughts running through my head throughout the race and these couple days following.

I’ll start by setting the stage for this 10k race. It was cold and rainy, and by the end, snowy. Michigan weather at its finest. We had been watching the forecast so we knew what we were getting into, and none of us were swayed. We were committed to completing this race, no matter the weather.

I should back up. By “we” I mean myself, a friend from church, and two other friends of hers. So you could say this was kind of out of my comfort zone. I had asked Chris, my church friend, if I could tag along because it was an all female race, and it looked like a lot of fun. It was out of town and they already had plans to stay at a hotel the previous night and they welcomed me with open arms. The comradery among runners is incredible. I’m fairly new to running compared to a lot of others, but throughout this whole experience I was never tempted to feel like an outsider.

The race itself started out pretty smoothly. I was feeling strong and confident for the first few miles. However, about halfway through I was noticing my left foot dragging quite a bit. This “foot drop” is one of the symptoms of my MS. Running doesn’t cause new symptoms, but it can aggravate old nerve damage. I have been training for my half marathon this coming fall, and have done plenty of long runs with almost no foot drop, so the fact that it was happening so soon was disheartening. Maybe I was just being more affected because of the excitement and nerves for the race, I don’t know.

My friend Chris had agreed to run with me for the entire race, to be sure I was safe. She did a fabulous job pointing out all the potholes and manhole covers, and steering me away from other obstacles. Throughout the race I did not trip even one time! However, I would not have finished this race without her assistance.

I think it was around the end of mile 4 I was having serious trouble keeping my foot from dragging. I was also experiencing some side and shoulder pain, but I was afraid to slow down and walk. My balance is better when I’m running. Something about the motion, I guess. I have another friend with MS who says the same thing about running. Walking requires a different movement and different nerves, I suppose. I told Chris what I was experiencing and she urged me to walk to give my body a rest, and use her arm for balance. At this point I was pretty discouraged and frustrated with what was going on with my body. I had not expected this to happen so soon. When Chris explained to me that my pace at the beginning of the race was much faster than I had been training at, it all made sense. I had been training between a 14 and 15 minute mile, but I had been running closer to 12! So clearly I had made a mistake, and I was paying the consequences.

I tell myself I don’t care about times and personal records, but that’s a big fat lie. I do care. I am always competing with myself, and I feel a great sense of pride when I am able to see my pace improve. The problem is, I want it to happen sooner than is realistic. So now thanks to my prideful denial of my physical abilities, I hobbled the last two miles of the race mostly hanging for dear life on Chris’ arm. I felt ashamed, defeated. My ugly pride had taken a hit. I started off too fast and it hurt me in the end. This felt a lot like failure, because I feel like I should have known better.

But listen – this was NOT failure. I finished the race! And with a PR to boot! So I made it more challenging for myself by starting too fast, and I had to lean on a friend to accomplish my goal of finishing. So what? Can we all agree there’s nothing wrong with that? We all have challenges in our lives, and very often we have to lean on our friends for help. Friendships enrich our lives, make us stronger, make us better. This is good!

Ecclesiastes 4:9-10 ESV “Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up.”

There was a point in the race that I was feeling particularly angry. Not angry at myself, but angry at the multiple sclerosis that makes things so difficult. On most days I am able to function like a normal person and can almost forget I have this affliction. But then you run 6.2 miles and you are reminded. And that sucks, Big Time. So yes, I was angry. But then I was reminded that I hated running for most of my life. I didn’t start running until 2015, six years after I was diagnosed with MS. I run because I have MS. To show myself and others that it’s possible. MS doesn’t have to mean life in a wheelchair. This is what I believed when they first diagnosed me, and I know now that’s not the case.

I watched the following day as Worknesh Degefa dominated the Women’s Elite Race in the Boston Marathon. She ran the last 20 miles alone. Way ahead of the pack. Yes, it was cool that she was in the lead, but what was even cooler was that she was doing her thing. It didn’t seem to bother her one bit that she was surrounded by absolutely no one. The mental fortitude that must have taken is something I aspire to. If I can run these races and just zone out Degefa-style, then perhaps I can keep a steady pace and finish strong.

So I learned a few lessons with this race. I learned that you can’t rush the process. You have to pace yourself, and that requires patience and humility. There may be people zooming by you, but pay no attention. As Chris encouraged me I think during mile six – “you do you”. Forget about the other runners. Just keep moving toward the finish line. You’ll get there. Lesson #2: You want to change your pace? Do it in training. Don’t switch that up during a race. Sorry, I don’t know how that applies to life. It might pretty much just be applicable to running 😉 And lesson #3 was that friendships are invaluable gifts and not to be taken lightly.

My dad was able to join us to spectate this race, and it meant a lot to have family there rooting me on. He called me the following day and asked how I was feeling. He specifically asked if I was still planning on running a half marathon and I answered without hesitation – YES. No question. At this point in time I have no idea how I’ll physically manage it, but I’m choosing to trust in the training process. Four years ago I was barely walking, three years ago I ran my first 5k, and just 6 months ago I ran my first 10k. This body just keeps getting stronger. The more I push, little by little, the farther I can go. I don’t know how far MS will let me go with this running stuff, but I’m gonna keep pushing the line until she forces me to stop. And with God’s grace, I have hope that day will never come.



Cochlear implant, Deafness, Disability, Faith, Family, Food, Hearing Loss, Hobbies, Low vision, Multiple Sclerosis, Partial Blindness, Visually Impaired, Writing

Rainy days

1 Comment

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?

Coffee, Multiple Sclerosis, Visually Impaired

I’m the boss around here

1 Comment

So, I was doing the dishes today and as I leaned over to put another clean dish in the drying rack I see that there is a full cup of coffee sitting in my Keurig. I stare at it for a second or two, trying to recall brewing a cup of coffee. No one else in this house drinks coffee, so it must have been me. Yet I can’t recall. The cup is cold to the touch, so it’s been there for some time. This worries me.

I wish I could say this is a rare occurrence for me. I wish I could say it happens every now and then if I’m rushed or exhausted or whatever. Because I know it happens to lots of people. My girl friends joke about it, reassuring me that it’s just a normal part of aging. But I don’t think that’s true. I think it happens more frequently to me than it ought to, and I have to be honest: That scares the S**T out of me.

I have multiple sclerosis, and anyone with multiple sclerosis understands that every teeny tiny symptom could be a start of a relapse, or it could be nothing. Fellow MSers understand that hovering cloud of doom, threatening to take over your body once and for all. I have the relapsing kind, for now, so if I do have a relapse I can hold on to the hope that it may not be permanent. I’ve had lots of symptoms that have popped up for a couple months and then gone away, never to reappear. But on the other hand, the damage to my nerves is always permanent and will always leave the potential for problems down the road. Take my vision for example. We’re calling that episode a relapse, but it left permanent damage that will affect me the rest of my life. I will always be visually impaired this side of heaven. I don’t struggle as much with it as I did in the beginning, because by God’s grace I’ve grown and adapted, but it’s always here as a reminder.

But memory loss? I don’t know, that one seems so much scarier to me. I mean, I can deal with losing physical functions. But losing my MIND?? I don’t know. I just don’t know. It just scares me, y’all, and that’s all I wanted to share really. That though I’ve been in the best physical shape of my life lately, feeling good and having no issues, at the end of the day I still have MS. It will always be a part of me. I just have to make sure that it knows who’s the boss around here.

Health, Hearing Loss, Multiple Sclerosis, Visually Impaired

Here’s an honest post

2 Comments

Not that my posts are never honest, just that this one is taking me a little bit of extra courage to post. I’ve got my big girl pants on here, folks.

I went to see my doctor yesterday to talk about anxiety. It’s something I’ve been struggling with for some time now, well over a year, only I’m just now realizing that’s what IT is. So I’m getting help.  And in case there was any shred of doubt in my mind that this was a real problem for me, I got worked up and nervous on the way to the doctor’s, worrying that we wouldn’t get there in time (with 50 minutes still yet to spare), and then the doctor’s office made me wait for a good 30 minutes. So I sat there, appearing completely calm, while my insides itched and twitched and crawled around. My heart was racing, my chest was getting so tight it was hard to breathe. When I describe all this to my doctor, and to friends who are familiar with anxiety, they nod in reassurance that it is a real problem and I’m not crazy.

These little anxiety attacks happen more frequently than they ought to. Very often, too often, they cause me to lash out in anger at my children. They don’t deserve that (usually lol). Also it’s just mentally exhausting to be walking around in an amped up state of mind, with your insides all twitchy and restless. Honestly, it didn’t bother me quite as much when I was fatigued. I’m not saying I want to go back to the land of fatigue, of course not, I’m just saying the anxiety wasn’t as evident. I didn’t really see it for what it was because I was blaming it on the fatigue and I could always just sleep it off. But no more. Now I am healthy and I’ve got energy to feel the things I’m feeling that need to be addressed. And now I’m addressing them. Lord, don’t leave me now. I still need You every day.

I’ve thought a lot about where this anxiety is coming from. Who knows, really, but I wonder if this is the residual effects of my vision and hearing loss. Now that I’ve reconnected with people and I’m in better physical health, maybe this is part of that grief and rehabilitation process. I certainly don’t like to give my disabilities more credit than they deserve, but it’s true that I live outside of my comfort zone almost 90% of the time. Nothing looks right, nothing sounds right. It’s all still very foreign to me. I have to believe that this won’t always be true. I have to believe that I’m going to find my new comfort zone. And when I do, believe me, I will move right in. I’ll decorate it with paisley, Wonder Woman, and maybe a cowbell or two. And all my favorite people will be invited!

 

Daily Snippets, Funny story, Kids, Visually Impaired

We call this an ouchie wah-wah

Leave a comment

So thanks to my poor vision, I guess, I ran head first into my daughter’s loft bed. Again. This time super duper hard. So I think I’m gonna have a major goose egg on my forehead by morning. We need to put up a sign that says in bold, high contrast colors, “DUCK!!” Which, coincidentally, rhymes with the word I would have said had my daughter not been right there to witness my stupidity.

Can we just start over now?

Coffee, Grown-up Stuff, Health, Kids, Running, Visually Impaired

April Update

Leave a comment

I am running a 5k next week. I haven’t been training for it. Occasionally I’ll get a run in, and I do fine. So I think I’ll do fine on race day. I won’t be breaking any records, but I’m confident I’ll finish on my feet. Which I guess is the most important thing to me. Just keep swimming.

This morning when my son went to pack his lunch, he found a gang of tiny ants in his lunch box. Eww. He freaked out, rightfully so I suppose, but he went a little overboard if you ask me. I mean, they weren’t biting ants, or even the flying kind. But still, what a mess. The kids managed to get out the door to the bus on time, while I did what I could to clean up before my ride came (dermatologist appointment today), but I’m sure there are still creepy crawlies hanging around here and there. I put his backpack in the garage because they were there too. This is per my son of course, because my vision, you know? They are too small for me to see, unless I know where to look. It didn’t help that his backpack is black, so the sneaky ants are camouflaged. 

Ugh. Then my ride came 15 minutes early, and I was still in my pajamas. But the driver was plenty patient, and everything was fine. The day could only go up from there, right?

And it did! The dermatologist seemed to know exactly what is going on with my face, and it turns out it’s not my fault! It broke out again when I was on the prednisonea couple months ago, and just won’t clear up. He said the prednisone was likely just a trigger for the underlying cause, which he believes to be rosacea. Stress is also a trigger, so I think I need less stress in my life. Anyone wanna take my kids for awhile? Or the dog? Or both? Anyway, the doctor called in a script for a cream, and I’ll go back in a few weeks to see if it’s helping. And he was a super nice doctor and didn’t make me feel crazy or neurotic, so I’m feeling better now. Amazing what a difference a kind interaction can do for your mood.

Now I have the whole day ahead of me, and with a positive outlook to boot. I’m thinking a nice cup of coffee and a good book are in my future today…

Deep thoughts, Disability, Hearing Loss, Multiple Sclerosis, Visually Impaired

Surviving, and then some

Leave a comment

Today I did better than simply surviving, and that felt good. Exceedingly good.

Depression is still an issue. I’m addressing it, one baby step at a time. Talking helps, and I have amazing family and friends who make that task not feel so impossible to do. Baking also helps. I love to bake. Cooking seems to help too, though I can’t say I love it the way I love baking. Still, it’s something. At least with the baking and cooking there’s always something to show for it. And something to share with others.

Though culinary therapy may work for now, I’m not sure if it will be sufficient. I am feeling a lot of ugly emotions, and I know it’s a part of the grief process. I’m feeling some anger and frustration and homesickness. Not much in my life is familiar anymore. Everything looks and sounds different than it used to, and that’s difficult. It’s been three and a half years since I lost my hearing and vision, and I feel homesick nearly all the time. I long to feel at home in my own skin. Someday it will come, I believe.

I don’t know why I’m feeling such strong emotions after all this time, but I suspect they’ve been there all along, waiting for things to settle down before rising to the surface for me to deal with. So I guess I’ve just reached a part of the grief process I’m not familiar with, and may need some professional help to work through it. We’ll see. For now, talking helps. And cookies. There’s always cookies.

Disability, Family, Kids, Motherhood, Multiple Sclerosis, Visually Impaired

One big whiny post

2 Comments

Um… This week is starting out kind of rough. First of all, my monthly infusion is due, which means the last batch in my system is running out, which means I’m fatigued. I don’t know why it does this to me, because it certainly doesn’t flood me with energy when I get the infusion, but there’s no denying it. And knowing it’s coming doesn’t make it any easier. It still sucks, every time. It’s disruptive and discouraging and a constant reminder that yes, I am still disabled. The fatigue is debilitating, and there’s not much I can do to fight it. This angers me.

Also, I’ve been feeling lately, and especially yesterday, that my vision has grown worse. It’s so subtle that it’s hard to say for sure, but yesterday I was absolutely sure that the fog in my field of vision has closed in a bit more. This angers me too, and scares the effing poop out of me. I fear losing all my vision, I fear not being able to see my family’s smiling faces or the sun rising in the morning. There are so many beautiful things to see in this world and I don’t want to miss out on seeing any of them. 

So we are working on getting in to see my Neuro Ophthalmologist, and in the meantime I am trying ro enjoy what I still have and holding fast to my faith in Christ. He brought me through my darkest times and I don’t expect him to leave anytime soon.

The problem with all this, of course, is that life around here doesn’t stop to cater to my issues. The people still need to eat, laundry still needs to be washed, and the dog still needs oodles of attention. Last night my daughter spent the evening puking her guts out, and I was happy to clean up after her. Because I’ve got a tough gut and I can’t see the puke anyway. They point to where it lands, I take care of it. Cuz I’m still the mom, after all. And I’m thankful to still be able to be here for my kids, even with MS.

Some days (nay, weeks) I just don’t have the energy to be cheery in spite of the mess. This is one of those weeks. And it’s only Tuesday! Pray for my survival, would you please?

Disability, Hearing Loss, Kids, Memories, Visually Impaired

I chaperoned, sort of

3 Comments

Is chaperoned even a word? It sounds weird. Well, either way, it’s what I did today. I went along on a field trip for my son. I passed out papers to kids, I supervised and walked them around a museum. It was a lot of fun overall, but also extremely challenging for me. From the get-go I was out of my comfort zone because I rode the school bus with a gang of fourth graders. Buses are loud, fourth graders are loud, it’s all loud. And since my cochlear implants can only process a handful of noises at any given moment, it was all just a bunch of gobbled-gook to my brain. But the bus ride was really the easy part.

Once we arrived at the museum, I was in a little more shock. It’s just hard walking around unfamiliar places, and even harder when you are with a bunch of people unfamiliar to your specific needs. I mean, on the outside I look completely normal. Well, except for the cochlear implants, but I think most people assume that since I have them, I have no trouble hearing the way they do. I had not tried to explain to any of the adults that I could only see clearly within a small field of vision eight or ten feet ahead of me, or that in loud situations I need to be standing near the speaker, within lip-reading distance. So when the person in charge is talking to the group, I have no idea what they are saying. When they say something funny and everyone is laughing, I stand there feeling rather idiotic. I mean, I never know if what’s being said is important for me to know or not. They could just be giving a history lesson, or they could be giving instructions for where to go and when. If it’s the latter, I would kind of need to know, since I was being put in charge of a small group of children. In hindsight I guess I should have done a better job educating the teacher. But, all anxieties aside, I managed and we all had a good time. Luke and another student both helped me to know what was going on, so there wasn’t much problem there. Also, we were given thorough hand-outs detailing the schedule and location of each segment throughout the day.

So I guess you could say the day was bittersweet. On one hand it was fun, and really awesome that I was able to be there to support my son and his class – he had begged me to chaperone – and on the other hand it was bittersweet. I felt a lot more impaired than I usually do. It was a big stretch out of my comfort zone and away from my physical capabilities. But I think Luke understands that, as he is an empathic kid, and he appreciates that I had the courage to do it. He knows I only do it because I love him.

Disability, Multiple Sclerosis, Running, Visually Impaired

No excuses left

1 Comment

I went to that MS lunch program yesterday and had a wonderful time talking with others about staying healthy and coping with every day MS symptoms like fatigue and poor balance. Just as I suspected, it was refreshing to chat with others in similar situations to mine. No need to explain much; there was a strong sense of mutual understanding. I’m so glad I went and I am already planning to be at the next one.

But let me tell you, the most fantastic thing I learned yesterday had nothing to do with the program. I was chatting with another lady while we were both waiting for our rides, and I learned that our public transit system offers another sort of ride, similar to the Spec-Tran. I have been using the Spec-Tran for I think two years now (I can’t believe it’s been that long), and while it’s a wonderful service, it does get a little expensive. Especially when I am looking at using them to get me to the YMCA to exercise 2 or 3 times per week. It’s $2.50 each way, so every day I go to the Y, it’s $5. Which is kind of the opposite of motivational. So I’m paying for the Y membership, and $5 a day on top of that, and that really adds up. It’s almost as painful as paying for the dentist. Almost.

But this other service, the Redi-Ride, will come to my house, same as Spec-Tran, and will take me anywhere in my township – including the YMCA – for $0.60 per ride. Sixty cents, people! AND, they only need 4 hours notice, as opposed to the 24 hours Spec-Tran requires. I am beyond giddy about this. That may seem silly, to be giddy, but this is a big deal in my world. MS stripped me of my independence three years ago by taking my vision, but by golly I am getting a lot of it back (the independence, not the vision). The Spec-Tran service plays a big part in that, but this Redi-Ride will do the same, and with a lot less pain (financially speaking, of course).

So that is my excitement for the week. I’m very excited about this Y membership, because I believe it will remove any excuses I may have about running, and now with the Redi-Ride I can’t even complain that it’s too expensive to get there. No matter the weather, I can still keep moving. Is my knee giving me trouble? Use the elliptical. Hip acting up? Swim in the pool. Feeling lonely? Join a class! Yes, this was a good decision. I’m making an investment in my health. This body I’m working with is flawed. MS is a serious setback, but by getting stronger and staying healthy, I am fighting back. I want the odds to be in MY favor, not the disease’s.

I signed up for another 5k race, and it’s less than a month away. I hadn’t been sure if I would be ready for it, but now I feel like there’s a good chance I will be. One day at a time, right?