I use my phone every day, all day. It has tons of useful features to support my life. It helps me keep myself and my family on track. Lately I had a thought I wanted to share. My phone is like a metaphor for my life. Let me explain why.
I was canoeing a couple years ago and the canoe tipped over. My phone was in a Ziploc bag, in my running belt, and water leaked into the bag, damaging my phone. I was able to soak it in a bag of rice for awhile, which restored most of its functions, but the one thing I can’t do is use the back button and that other one on the bottom left (the one that shows you all your open apps).
However, I found a workaround by using the s-pen to use those two buttons. The phone responds to the s-pen, just not my finger. A couple weeks ago I was replacing the pen into the phone and it snapped on me. It still works the way the pen should, it just doesn’t have that spring action needed to get it back out of its slot. So now if I want to use my back button, I need to bang the end of the phone on the heel of my hand in order to get the s-pen out. Other than that, the phone works great! It’s kind of ridiculous and it makes me chuckle.
It looks like a completely normal, functional phone. It just has a few broken features but there are workarounds. And that is a metaphor for my life. I am deaf but I have cochlear implants to help me hear. I am visually impaired but have friends, family, and public transportation to help me get around. I look completely normal, I just have a few broken pieces and I have my workarounds I’ve discovered I can use in order to continue functioning. So there. That is how my phone is like me.
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.
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.
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?
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.
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!
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?
I may be deaf and half-blind, but I am and will always be… still Mindy