Category Archives: Writing

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.

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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 😉

Getting back to it

I’m back! The illness is gone. We have recovered. We all came through unscathed; my husband and the dog both managed to avoid it altogether (I do hope I’m not jinxing my husband by saying this).

I got back to working on the book I’m writing. I gave myself a deadline of 12/31/15, which is quite aggressive I know, but I also know I have to do such things to keep me from giving up altogether. Deadlines motivate, y’all. The book is a memoir of sorts, so it’s not a cut and dried process. I understand this, and know full well that I may not have a rough draft by my deadline, but progress is progress. Phleh.

I had a thought today (while in the shower… all my favorite ideas come to me while I’m washing my hair) that maybe I will start blogging every day. That sounds like another aggressive goal, doesn’t it? Well, I’m not talking about writing good stuff every day. Just every day, I will plan to share my favorite thought or event from that day. I use the term “event” loosely, as it could be as lame as “the dog didn’t piss me off today, and here’s why…” To make this daily occurrence even more exciting for you loyal readers, I would give it a snarky name, like The Daily Snippet. Or to be more true to how it will likely end up, The Sometimes Daily Snippet. What do you think? Wanna play along? Some days you may be totally bored with it, and others I may just get lucky and strike a funny bone. You just never know, you know? Sounds exciting, right? Let’s start here…

Today’s Daily Snippet:
I love Pandora. It plays the old stuff, the stuff I remember, pre-hearing loss. The songs and rhythms that are familiar to me are the only types of music I can enjoy at this point, with my cochlear implants. I’m told it will get better with time, and to just be patient. Listening to familiar songs is supposed to help. Thank you Pandora, for helping my brain re-learn how to hear and enjoy music. And thank you Beck, for being your funky cool self 🙂

Also notable today, I did some rearranging around the house and that always makes me feel happy. Helps me forget all the evil going on the world right now, if only for a moment.

Hug your loved ones today, and every day. Peace out!

Spring break festivities

I had a wonderful day today. Yesterday was okay, with the exception of a large dental expense. It almost physically pains me to pay for dental work, but it’s gotta be done. A necessary evil, I suppose.

Speaking of necessary evils, today I helped a friend prepare her tax return. She’s a smart cookie and probably didn’t really need my help, but I was able to offer moral support and celebrate with her when we were done. She ended up getting a refund rather than owing a crap-ton of money, so it was definitely cause for celebration. We took the kids out for ice cream cones. It was cold and rainy, but in my book the weather is always perfect for ice cream.

Tomorrow the kids and I will be taking the Spec-Tran to the local bounce house. We’ll be there all afternoon, so we’ll need to be sure to bring snacks and other supplies. I’ll bring electronics just in case one of them gets bored, but I’m hoping that doesn’t happen. I’m really hoping they play away and forget about me so I can sit, uninterrupted, and work on writing my book. It will be a great day for all of us, I’m sure.