Category Archives: Low vision

Focus

Did I mention I went to see a low vision specialist a couple weeks ago? My neuro-ophthalmologist had recommended it, since my vision has remained stable over the past six years. I’m not sure why he waited so long to suggest it, because I could have used the help a lot sooner, but that doesn’t matter. Better late than never.

So I went to see this low vision specialist, Dr. Putnam, and I learned a lot. I learned that what I’ve been doing up to this point to manage my low vision has been helpful, in that I’ve adapted. However, I also learned that in many areas rather than adapt, I avoid. Take using cash, for example. It takes so long to figure out what denomination a bill is, or what type of coin I’m holding, that I just use my debit card for everything. Or if cash is my only option, I’ll ask one of my children to get the cash for me. Who knows how many other things I’ve come to avoid because they are too difficult?

The biggest thing I’ve avoided is driving. I’ve never actually had a doctor tell me I couldn’t. I just don’t because I assumed I can’t because I have low vision. When it was time to renew my license, rather than taking the required test, I opted for the state identification card instead. When doctors ask me if I drive, I chuckle. Because to me it seems so obvious that I CANNOT drive. So when this low vision doctor asked me if I drive, I reacted the same as always. I chuckled and said “No, that would be impossible.” Her response surprised me. Now this doctor has seen my visual field tests. She knows very clearly what I can and cannot see. And yet she said to me, “Don’t say it’s impossible. I don’t want you to get your hopes up too high, but I also don’t want you to count it out. There’s a lot we can do. Even if it’s restricted driving, it may be something that’s an option for you.”

This idea floored me, and I haven’t stopped thinking about it since. I’ve lost about 60% of my field of vision, but the other 40% is clear, as long as I’m wearing my glasses. Is 40% enough to safely drive a car? Dr. Putnam seems to think it could be, or it’s at least enough to warrant exploring the idea.

Speaking of my glasses, a year and a half ago, I bought a new pair with the recommended progressive lenses. The low vision doctor believed that the progressive lenses were not helping me, but were actually hurting me. The way they work, I guess they kind of block out or distort a good portion of that 40% where my eyes can actually see. Which would explain why I had secretly felt extra blind for awhile. I just figured that was the way it was going to be, and I just moved on. But now I have these new lenses, with an updated prescription, and without the progressive lenses. And let me tell you, there is a remarkable difference. It was a little strange the first day wearing them, but now that my brain has adjusted to them I can tell you I see so much better. Not close up of course, but that’s okay because I’m nearsighted. Seeing far away is greatly improved, and that has me thinking again about what Dr. Putnam said to me about driving.

My husband asked me about this today, the idea of me driving again, and I had to be honest, it scares the crap out of me. BUT – I’m trying to open my mind up to the possibility, just like Dr. Putnam encouraged me to do. I’m trying to ditch my all-or-nothing thinking here. Digging up the idea of me driving that I had successfully grieved and buried in its grave. It’s a big idea. Scary too. But I changed my mind once about this, I can change it back. It’s just going to take some time. We are deciding to reopen the chapter on this aspect of my disability and give it more thought and prayer.

So that is the exciting news around here. We have lots of other things going on but I won’t bore you today with the details. In addition to family and kid stuff I’m remaining semi-focused on running and writing, but that’s probably another blog post of its own. Stay tuned, I’ll try to be back at least once before Christmas. Happy Wednesday and peace to you, my friends.

Time Management

All the things. It’s just a challenge managing all the things. I’m sure I’ll get the hang of it, but I’m gonna have to pray real hard about taking on this much again.

I had a long phone call last week with my disability insurance company to review my status. They just like to make sure I’m still unable to work. It’s always fun rehashing the details. She asked how driving was, which is funny, because it was 20 minutes into our conversation and I had already explained to her how bad my vision is. I need my family to read labels for me, I don’t think driving a car would be a wise idea. What stuck out to me about the phone call was at the very end when she asked me the primary reason I wasn’t able to work a full time job, and I answered without even really having to think about it: “because it would take me a week to accomplish what I used to be able to do in a day.” That statement essentially rang in my ears for the next few days. This is why I need to be patient with myself. Everyone around me is so gracious, yet I’m the last one to catch on.

So these responsibilities I’ve taken on over this past year, along with my normal household and mothering duties, are totally doable. One. Step. At. A. Time. I’m just going to keep at it and see how it goes. If I find that the important things are getting missed or done too late, then I know it’s too much and I need to scale back or reach out for help. But so far it seems like it’s been working well. I’m learning how to delegate as well as take breaks. It feels like a whole new way of looking at time management. New to me, at least.

I’m very much looking forward to Thanksgiving this year. We’ve always hosted, so there’s nothing new there, but this year my son and I signed up to run the Turkey Trot 5k in our city the morning of Thanksgiving. I saw that a neighbor of mine was attending, so I asked if we could tag along. I’m really looking forward to it, because this is an experience my son and I can share, even if he runs twice as fast as I do. Thanksgiving mornings are pretty low key for us anyway, because most of the prep work is done the day before. All we do is put the turkey in the oven and then wait for the family to arrive with the rest of the food.

I stopped taking the antibiotic for my rosacea and am using a medicated cleanser and cream instead. I got the cleanser late, because we were having trouble with the pharmacy, but I’ve had it for a few days now and I can tell already that it’s clearing up my skin. It’s made with sulfur so it smells not so awesome but I don’t mind. If it works, it’s worth it. I’m just happy to be off medication. The only pills I take now are vitamins and supplements, and that means it’s not the end of the world when I forget to take them. Which happens often. I’m trying to get a morning routing set with my powdered greens and my coffee, and hopefully now my vitamins too.

I’ve been reading a lot of good books lately. Most of the books I read are digital library books that I only get for a set amount of time, and I often forget to read them until they give me a 3 day warning that they are about to expire, so I have a collection of books I just didn’t finish in time. Which is why if you look at my Goodreads list, it looks like I’m reading like it’s my J.O.B., but really I’m only reading one at a time. Right now I’m reading (actually listening, cuz it’s an audio book) The Shallows, by Nicholas Carr and I’m only on chapter three but already it’s a little frightening. It’s about what the internet is doing to our brains, how it affects the way we think and process information. Very interesting so far.

I expect this weekend to be pretty chill so maybe I’ll take some time and work on writing my memoir. I was getting overwhelmed with the idea but stepping away from it seems to have helped, and I am more confident in my next steps. I’m going to focus less on the details of what happened for awhile and more on the ultimate message I want to thread through the book. Or maybe I’ll just re-read what I’ve written and fill in whatever comes to mind. Whatever I do, I understand now that writing a memoir can be a long and tedious process and the worst thing I can do is rush the process.

Tomorrow is our leader’s meeting for Bible Study Fellowship so I need to head off for now and start winding down. I hope you all survived your Monday and enjoy the rest of your week!

Finding Contentment

I’ve been fartin’ around on Facebook all morning, and then I did some filing, put away clean dishes from the dishwasher, and now I’m letting my phone charge back up so I can go for a run this afternoon. I could really go for a nap but I pretty much always feel better after a run so I’m opting for that instead.

I’ve allowed myself to get really busy with all the commitments I took on, and I think I’m finally getting a handle on managing it without moving around like a headless chicken. I’m finding the key is to allow myself to relax from time to time, and when I say that I mean REAL relaxing, not the fake kind. I’m giving myself permission to sit with my feet up, read a book or crochet, sip some coffee, and NOT feel guilty. It’s really nice, but it’s strange how difficult it is for me sometimes. It does take some self-talking to be totally okay with it. Otherwise I’m just pretending to relax. I may be sitting, but I’m secretly mulling over all the things I “should” be doing at that moment. So the Real Relaxing is nice. Very therapeutic.

I had an interesting thought yesterday while listening to the lecture at Bible Study Fellowship. We were studying the story of the lame beggar at the temple gates in the book of Acts, and the lecturer said that when the man was healed, his life became better because his disability was removed. Something about the way she worded it struck me, and a voice in my heart was asking,

“Mindy, would your life be better if your disability was removed?”

I honestly believe the answer to that question is no. As much as I grieve what I’ve lost, I am even more grateful for what it has added to my life. It has made me a more patient and compassionate person. It has strengthened bonds between my family members and my friends. It has introduced me to new people and new ideas. It has stretched me in so many ways to move outside of my comfort zone. But the most important thing? It’s that God is glorified through all He is doing through me. Because it’s certainly not me. I’m just following His directions. That is the most valuable outcome of all this, and what I have been praying for from the beginning.

As I’ve struggled over these past 6 years with my disability I’ve been trying to find a new normal or a base comfort level. What I realized yesterday is that I am finally at a place of contentment. I am finally at home again in this body and I am content to be where I am. Fully and completely. Hallelujah. Amen?

John 9:3 ESV “but that the works of God might be displayed in Him.”

2019 Capital City River Run

Welp, I did it! I ran a half marathon. All 13.1 miles with minimal walking. All of this training I’ve been doing really paid off, and I was able to run pretty much the entire way. I walked over slippery bridges and once late in the race because I was sensing some drop foot, but other than that I was good to go. I did NOT feel like I was dying, and despite how I looked to others at the finish line, I felt fabulous. I was all smiles and ready to sign up for the next one.

The Comradery: I simply could not have done this race without my friends. Alicia and Staci were with me every step of the way, guiding me away from obstacles and leading me down hills so I wouldn’t lose my balance. They even kept me from taking off in the beginning at too fast a pace, which is something I tend to do, and pay dearly for on these long runs. I happened to see a couple other running friends before the race started, and that really helped to boost my adrenaline. All the runners I have gotten to know are pretty special people. We are a diverse crowd, and yet everyone is so supportive of on another, regardless of all our differences. We are all running with the same goal, but for very different reasons, and I find that pretty awesome.

The Spectators: I had an entire team of spectators cheering me on throughout this race, and this was pretty dang awesome. My husband, my son and daughter (who had no shortage of hugs), my dad and stepmom, my sister and her boyfriend, my niece, and as a last surprise of the morning, my big brother. I was so surprised to see him there because he has been so busy working lately I just didn’t expect he would be able to make it. But he was there. They were all there, and they knew why this was such a big deal. It wasn’t just a race. This race happened almost exactly 6 years from when I lost my hearing and vision. In fact, that morning a memory came up on my husband’s Facebook feed. It was a posting he had sent out updating everyone on my long hospital stay. I was so sick and no one knew what was wrong with me, and I could not walk unassisted, among other numerous issues. So to have that come up on his feed the day I was running my first half marathon was just incredibly fitting.

The Final 5k: At 10 miles my family was there cheering us on, as they had in several other spots, and my son started jogging next to me. The excitement of the moment took over, and I invited him to run the final 3.1 miles with us. They frown on this sort of thing, I guess, but no one bothered us about it. He did a great job keeping me going and holding me steady down the hills. However, when we were nearing the finish, we were at the top of a very steep concrete ramp that feeds into the baseball stadium where the finish line was. He danced on ahead of me while Alicia and Staci took my arms to help me down. I was so embarrassed to see my husband at the bottom of the ramp, taking our picture. It looked rather pathetic, as if my legs had stopped working, but really it was just a matter of keeping my balance down the incline. When we reached flat land my son was waiting for me and we began to sprint the last stretch towards the Finish. I was so giddy I was almost in tears. And after I crossed the line I tried to stop but instead just fell to the ground. This is what seems to happen after my races and it alarms people because it looks like I’m hurt but really it’s just muscle weakness and poor balance. The motion of running keeps me on my feet somehow, so when I try to walk it never works. They brought me a chair and a woman put a medal around my neck and we all just stayed there congratulating each other and taking pictures.

It was a fantastic race and I am so glad I did it. Every time I try a longer distance I think about how far I’ve come, and I wonder how far I can go. My curiosity I think is what drives me. I just want to see how far I can go before my body says no. Yes, it tries to tell me no some days, but I’ll always try to call it’s bluff.

I am so grateful to everyone for supporting me and cheering me on. I could not have done this without you. Most of all though, I owe my gratitude to Jesus Christ. I would not have even started on this journey into running and health if it had not been for His sustaining grace and comfort. He is my constant, every day all day running partner. Hallelujah!

The Finish Line:

Courage

Yesterday was my scheduled long run of the week, in preparation for my very first half marathon in 36 days (but who’s counting?). I planned out my route, a simple 5 miles out through town and on to the park trails, and 5 miles back. I started out feeling really strong, and I was excited for this run because up to this point my longest run had been 8 miles. I knew I was going to have to walk for parts of it, to rest my knee, and I was okay with that concession.

Do you ever embark on a new challenge and you feel really confident about it, only to fall flat on your face, metaphorically speaking? Well, I did this, only it wasn’t metaphorical. A mile and a half in to this long run, I tripped on the sidewalk and fell Flat. On. My. Face. I sat on the grass between the sidewalk and the street and inspected my wounds. Were my teeth still in tact? Was I gushing blood? Were my cochlear implants still on my head? Yes, no, and surprisingly, yes. After about 20 seconds I stood up, brushed myself off, and continued to run. But as I ran I could feel my upper lip swelling and I could taste blood. I decided to call my husband, who happened to be working from home that day, and ask him to bring me some ice. Until he drove up to give me the ice pack, I fully intended to run the remaining 8.5 miles with a fat lip and what would eventually turn into a massive headache. I think he could see that I was on the verge of tears, and he suggested that I ride back home with him and just rest a bit, that I could always go back out when I was ready. After a few moments of hesitation, I said yes. I kept my running clothes on for several hours, under the delusion that I would go back out and run the 10 miles. But then the headache came, and I decided I was better off taking an Aleve and sleeping for awhile. I could always try again Saturday.

So Friday felt like a bust and I woke up Saturday knowing this was my day to get that long run in, but really feeling like I need to be safer about it. This had been the 3rd time I fell this month, and while I need those long runs to prepare my body for 13.1, I don’t think it’s wise to run so far from home without a guide. I can still get the same workout on the dreaded treadmill in our basement. I hate running on the treadmill, but I need to get ready for this race, and not injure myself in the process.

To be honest, I woke up Saturday not really sure if I was going to run or not. But then I was on Facebook and my friends were posting reports of their long training runs. And then a friend texted asking how my face was doing, and another friend reminding me that yesterday’s fall was not failure, because she still remembers when I needed a walker to walk. So with a few messages of encouragement, in just a matter of minutes, my extreme discouragement transformed into full-on Courage. I was ready to run these miles. The icing on the cake, folks, was when I walked down to the treadmill and was reminded of the picture I keep above the display that says: “There will be a day when I can no longer run. Today is not that day.” I had forgotten all about it, but you can bet that was the final word of encouragement I needed to make sure I got that run started. And once I start, you better believe I’m a stubborn mule and I will finish, dang it.

I learned some things about running on the treadmill. One, when you run longer than 99 minutes, it stops moving and restarts the timer. Thankfully it didn’t reset the distance because that would have really frustrated me, but I ended the run at 9.99 miles just to be on the safe side. Some other advantages to the treadmill are that I can watch tv, I can stream Pandora without using data, and I have immediate access to a bathroom. So it wasn’t all bad. I did struggle with finding a good pace but I suppose that’s all part of the training. Better to figure this stuff out here in the safety of my home, than out on the course on race day.

I’ll be honest, compared to most of my runs, this one was pretty sucky, but it’s done and I have to be okay with that. My legs didn’t fail me, although my knee did cause me to fall once so I was glad I had a grab bar, I had zero drop foot issues, and I was actually able to finish with a very slow jog. So it’s a win in my book, whether I like it or not. Two days of rest and then I’ll be back out again for some short runs!

I’m a big girl now

Something great that has come out of my disability in the past 6 years is that there isn’t much in life that I take for granted anymore. That is a huge gift, to have a grateful heart the majority of the time, without even having to try.

Yesterday I had a hair appointment to get my wig trimmed. Not literally, that’s just the phrase my husband uses for getting his hair cut. Anyway, the salon I go to is about 2 miles away, and in the past I would have utilized the paratransit bus system to get there. However, though it’s a great service that I use quite often, it does come with drawbacks. You have to schedule ahead of time, and then you have to wait. They give you a 15 minute window to work with, which is fine, but it can be a little nerve wracking at times. I had decided that since the weather looked decent, I was going to ride my tricycle. And I did! It was fabulous. I felt so free and uninhibited. I got where I needed to go, at my own pace, all by myself. Which sounds silly when I say that out loud because for Pete’s sake, I’m a grown woman. But you guys! I know you all get it, right? I did it! All by myself!!

You have to celebrate the little things when they are good so you make the good things bigger. God loves to work in the details and I love that about Him. Find something to celebrate today, no matter how small.

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.┬áIf 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?