Category Archives: Writing

Hack hack, ahem ahem, cough cough

You guys. I’ve been sick for all of two and a half days and I’m trying sooo hard not to be a baby about it, but geesh. I don’t get sick very often, but when I do, I just want to snuggle up in a cozy blanket and let people wait on me. The first part works alright but the second one, not so much. Because folks, I’m the mom. And mom doesn’t take sick days. Which is only kind of true. My family is really great about helping out and giving me my space. No one’s even complained that the laundry is piling up while I’m downstairs nursing myself back to health.  It’ll get done, eventually.

Anyhoo. Since I’ve been out of commission all I can do is sit around thinking about how little I’ve blogged lately. Not cuz my life is boring (though it is a little) but because I just haven’t been in the mood for blogging. It happens every now and then. Whatevs.

What’s going on lately, you ask? Well, the son has been busy wrestling, both for the local club and the middle school. This is exciting stuff folks. Now that he’s on the middle school team he practices every day right after school. He does not seem to be tired out by this, thankfully, and it’s been a huge load off for our resident chauffeur, my hubby. Now he doesn’t have to drop him off, then go back and pick him up. Just one trip per day, and he’s home by dinnertime. Which means we all get to eat as a family again. Every day!

The daughter is not in sports. Has no interest really, at least for now. That could change down the road but I don’t think that’s likely. Her two loves right now are art and animals. Since it’s -38 degrees outside these days, she did not want to go for more horseback riding lessons, so we found her an outlet for her art. A gentleman from our church is willing to give her weekly lessons and teach her whatever she wants to know. Right now she’s on a big Bob Ross nature scene kick, and it’s friggin’ amazing what she is able to create just after watching a few YouTube videos. I know I’m a tad biased because I’m her mother, but there’s no denying that she has some serious talent that will only get better with more training and practice.

It’s kind of weird but I’ve had zero motivation to write that book I had been talking about. I still want to tell my stories, just maybe not in that format. Maybe we’ll just keep them here on the blog for now. I could do some kind of kooky flashback series where I tell short stories about what happened to me five years ago. Or maybe I’ll get the hankering again to write the book. Who knows?

I’m just really happy doing the things I’m doing now that I don’t really feel like going back to that time. It feels too heavy. Right now good things are happening. My kids are growing and changing, and I’m able to be a part of that. I’m slowing down and trying to be more focused on the most important things. Spending time with God, family, friends. It’s been a good change.

And speaking of slow, I set myself a new goal: to run a half marathon in the fall (it’s speaking of slow cuz I’m a slow runner, get it?). I have a race picked out and a friend to run it with me. I have a training plan picked out on my Runkeeper app, and it doesn’t start until March 5th. So I have time to warm up to running regularly again. I’ve not been running since before the holidays so my legs are a little rusty.

I even spoke to my neurologist about how to train safely, and was reassured that this was not too big a goal for someone with MS. If I take it slow and am careful, it’s totally possible. In fact, she said regular exercise is just as crucial to my health as is my disease-modifying therapy. So as far as priorities, I need to bump it way back up to the top. She said that running will not cause me to relapse, but will only help to keep me from relapsing. When I run, certain symptoms flare up, like foot drop and difficulty seeing, but she said that’s because those are nerves that are already damaged. As long as I’m being safe about it, I should be fine. Which is why I always run these races with friends who can be a good set of eyes and ears for me and keep me safe. So that’s on the docket. 13.1 miles. In a row!

And that folks, is all I have for an update right now. I had a funny thought earlier and I was going to post it, but now I can’t remember it. So I apologize for my foggy memory keeping me from leaving you on a humorous note. Oh wait! I can leave you with a pun… this one I choose because we bought new winter gloves for my son today…

“I got a new pair of gloves today, but they’re both ‘lefts’ which, on the one hand, is great, but on the other, it’s just not right.”

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Frustration

I’m frustrated today. Frustrated and grumpy. It’s not anything specific, really. Just more of a general feeling. I was trying to crochet but it’s a challenging basket weave pattern and I just didn’t feel like messing with it anymore. This frustration makes me very unpleasant to be around because I’m a major grump. So I’m upstairs with a beer and a laptop, and I’m hashing it out on the keyboard. I was working on my book for awhile, with my cochlear implant volumes turned way down, and my son came into the room and scared the living daylights out of me. I didn’t hear him come in!! It’s a good thing I wasn’t holding my beer at the time. I was at a stuck point with the book anyway so the distraction was nice. He read some parts of the book and then we got to talking about what he remembered from when I first lost my hearing. It’s always interesting to hear it from my kids’ perspectives.

I think what I’ve learned today, or was reminded of, is that writing calms me. That frustrated feeling has almost completely left me, and I don’t feel like such a grump anymore. And I appreciate that you are willing to read all the silly things I write. So thank you, reader. From the bottom of my heart, thank you.

Stories to tell

I have been wanting for some time to write a book, a memoir of sorts, that tells all about how I lost my hearing and vision and how I made it through (spoiler alert: it was Jesus). That desire to write has waxed and waned over the months, but it’s back strong again. So. I made some progress on writing the book this past week. Okay, not in the actual writing, but I’m getting closer to that. Progress is progress.

The planning phase is important to me. I’ve been reading through my old journals from when I got sick in 2013 until now – I wrote a lot so I’m not even close to finished – and as I’m reading I’m jotting down the stories I want to tell. And I’m thinking that these stories might be good chapters. I don’t know if this is how the professionals do it, but it’s working for me so far. At least it FEELS like it’s working. It’s keeping me motivated and inspired to write and that’s probably the key element in actually completing this goal. This is what I have so far, in no particular order:

The time I got lost in my house
The time I got a pupil massage
The time a bulldozer drove over my head
The time I drove with one eye closed
The time I wanted to die
The time I cut an apple
The time I walked through Office Max, sort of
The time I got shots. In my EARS
The time the preacher pushed me

 

My line of thinking here was that though I have never written a book, I love to tell stories. And a book is essentially just a collection of stories, right? So that’s my starting point. This is so scary to me, but it’s still something I really want to do and so I can’t let fear stop me. I’ll just keep moving forward, one absurdly slow 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?

How MS Defines Me

I started this post three days ago, but didn’t get past the title. Now I’m deciding to continue with it, with the expectation that I can convey a clear and complete thought. Or maybe two.

I am fatigued. I am not handling it as well as usual, and I think that’s just because my running had given me a nice reprieve from the normal levels of fatigue. But having the kids home all week coupled with my MS medication running low (I get infused with Tysabri every four weeks), seems to have been too much on my body.

What bothers me most about the fatigue, at least this time around, is the effect it has on my cognition. I just can’t seem to make the connections, and even when I do, it takes an uncomfortably long time. So I’m awake, but I’m not really here. I struggle to finish sentences, I forget where I was headed within the house, I can’t put two and two together. And that’s frustrating, but I know this too shall pass. The kids go back to school tomorrow, I’ll go back to the infusion center hopefully Friday, and I will keep taking breaks when they are needed. And my family will be patient as always, they will pick up the slack where needed, it will be okay. We accommodate, together. I will get the rest I need. This is why I make the big bucks courtesy of Social Security, right? It will be okay.

MS is part of my life. It always will be, and I’m not sorry about that. It has taught me how to be patient and gracious, and how to laugh at myself. It has required strength I wouldn’t otherwise know I had. So yes, I guess you could say I am defined by my disability. I wouldn’t have it any other way.

Relishing the daily humdrum

Hmm. Well, I’ve kind of been feeling a blog post on the edge of my fingertips for some time (a couple weeks, not long), but now that I find the time and manage to sit down at my computer I’m at a loss for words. Isn’t that funny how that works? But now that I’ve started I’m sure the words will come. It usually happens like that. Usually.

Remember how I said I wanted to write a book? That’s not really all that true anymore. I love writing, yes, but the book idea was kind of daunting. It was never really my idea. Lots of people told me, after all that had happened to me in such a short period of time, that I should write a book. And I do love to write, so I thought it made sense. But I really never felt a nudge from God on that. He was pretty clear with me about writing this blog, and sharing my stories with others, but that was it. I do love to share my stories, when I can remember them, so I’m sure it’s possible that some day down the road we’ll get those stories all gathered together in a book, but I’m no longer putting pressure on myself to make that happen.

So I’ve decided to focus on other things lately. I am focusing on embracing the gift of each moment, embracing this new life I’ve found myself in. What does that look like? Nothing really out of the ordinary, really. Taking care of our home, taking care of the kids. Spending time with my family and friends. Wrestling tournaments, Girl Scout troop meetings, class parties, shopping trips. All blissfully ordinary things.

I don’t want to bore you with the details of those ordinary things, but I do want to explain why they are so significant to me. When I lost my hearing and my vision 2 1/2 years ago and I was in the hospital, they weren’t sure I was going to make it. But I did, I made it. And the recovery process that followed was tough on all of us, but I finally feel like we have made it THROUGH. We, as a family, have recovered, adjusted, adapted, and we are moving on with our lives. Granted, it’s quite different than what we may have envisioned, but I am firm in the belief that it is better. We have challenges, yes, but we are better off in spite of those challenges. Or maybe, perhaps, because of those challenges.  Life is good, folks. Real good.

“Every day is new again
Every day is yours to win
And that’s how heroes are made”

“Every Day is Yours to Win” ~R.E.M.

Experiment

So. I’ve been feeling rather irritated with myself lately, or just irritated in general, I can’t decide which. I find myself wasting a lot of time. It’s true that I have a lot of time with being home all day, no job, kids at school, and I can certainly afford to waste it. But I just don’t feel satisfied with that. I believe when I get in the habit of wasting a lot of time, that it sends me on a sluggish spiral down to Lazy Town. Then nothing gets accomplished. No book gets written, no good meals get planned or prepared, the dust starts to settle and cake up on the surfaces (metaphorically, mostly. Mostly.).

So I made an executive decision today and uninstalled Facebook from my phone. Because I’m pretty positive that’s what’s causing most of this. Not all, but a good portion of it. I also spend a lot of time reading books on my phone, but I’m not ready to call that “wasting time”. I love the books.

Here’s the issue with Facebook lately. My feed is 90% BORING. The other 10% contains thoughts and stories and updates from people I actually know. I know some people have decided to check out of Facebook altogether, but that 10% I would be missing is too important to me to give up. So rather than giving it up, I’m just going to limit my exposure to the section of the day when I intentionally sit down with my laptop to “work”. I have my alloted time every day to work: pay bills, plan meals, write, etc. and when I’m done working or need a break I can hop over to Facebook and catch up. So I’ll still be around, but it won’t consume my time or thoughts. In theory, of course, it’s only been 12 hours 😉