Category Archives: Disability

How my phone is like me

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.

Madam Sleepsalot

If you’re ever curious about my day to day routine, today is your lucky day. Now that kids are back in school and snow days are hopefully well behind us, I’ve settled into a daily routine. This time around I sort of just go with how my body is feeling, and it’s interesting to me how well this is working.

Every morning I get up at 5:30 with my son, and stay up until 8 when my daughter leaves for the bus stop (her school starts an hour later than his). While the kids are getting ready for school, I’m drinking coffee, reading my Bible, and sometimes eating breakfast (If my stomach is up for it). After the kids are off to school I go back to bed. I don’t set an alarm, I just sleep as long as my body needs to. Some days that’s only an hour or two, some days it’s more. Thursdays I generally sleep much longer because I’m recovering from a full day on Wednesdays, between Bible study in the morning and Financial Peace University at night.

After the morning nap I get up, eat a late breakfast or lunch, and then I get going with that day’s work. This usually includes dishes and laundry, and sometimes paying the bills and running. I’m usually done by 3:00, just before my son gets home from school, and then I can relax with a book or a tv show. Then I start thinking about what to make for dinner. The rest of the evening changes from day to day but in general I’m letting myself relax and enjoy time with family. I’m not stressing about my to do list because I’ve already done the day’s work. The rest can wait until tomorrow.

So you could say I work about 4 hours a day and sleep 10. This seems excessive to me, and the old me would think I was lazy. The new me is learning to understand this is just part of my disability and it’s what my body needs in order to heal and stay healthy.

It’s been really refreshing to be able to establish a routine that allows for a good work/rest balance. I’m getting things done, but I’m working WITH my fluctuating energy levels rather than fighting against them (or giving up altogether, as I have done in the past).

Much of this new attitude has resulted from consistent reminders of the grace God gives us. When I read in Scripture that He tells us to rest and to stop striving, or even to “strive to rest”, I am encouraged to know I’m doing the right thing. Amen? Amen.

You are enough

People like myself, who have been sort of thrust into permanent disability, use a phrase – “finding my new normal”. It refers to the process of acceptance of this new life, this new way of living, and embracing our new challenges and setbacks. For me, it refers to finding a space, figuratively speaking, that feels like home. I’m searching for comfort, for peace of mind, for a mental and emotional state where I can put up my feet and relax and be okay with just being who I am, HOW I am, as is.

This past weekend I was praying during my morning quiet time with Jesus, and I felt God speaking to me a very clear message. “You are enough. You are complete. As you are.” This blew my mind. I didn’t even know how much I needed to hear that, but boy was it a game changer. Up until now I think I’ve sort of been trying to be who I was – despite my limitations – and that’s very frustrating. Futile, in fact. What I believe God is saying to me is that I can be who I am now. That’s it. Warts and all! Just be who I am now. I am enough.

“For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.” Psalms 139:13-14

I’m sharing this snippet from my personal journal because I want you to know this message is for you too. Wherever you are, however you are, you are enough. Right where you stand. You are enough. Your Creator knows where you are, how you got here, and He’s got you covered. He’s molding you like a potter molds the clay. It might be uncomfortable, painful even, this molding process, but the end result is a beautiful piece of work. You are enough.

“But now, O Lord, you are our Father; we are the clay, and you are our potter; we are all the work of your hand.” Isaiah 64:8

February is almost over?

I know, I know. It’s been soooo long since I last posted. Almost a full month, can you believe that? It’s not that I have nothing going on that I could be writing about, or thoughts to share. It’s more of a quiet rebellion, the not sharing. I guess. But then I’m reading Anne Lamott recently and she inspires me to write. So I’m back again. For now.

At the end of last year I was feeling like I had this disability thing down, and then of course I realized I didn’t. Because I never will, entirely. I think what I was hoping for, striving for, was perfection in living. And I seem to remember learning that perfectionism is a curse. But how quickly we forget the most important lessons.

So how has it been? I have been tired. Continually tired and fatigued. I have my good days, or my good portions of days, but mostly they are clouded by the ever-present need for sleep and rest. This is tough for a reforming overachiever to accept, because there is so much to DO, and I can’t do it all the way I want, or when I want. I’m pretty sure I’m the only soul who really cares about that, so I could probably let that go, right?

I’m trying to learn how to relax, which as I type this I see that’s paradoxical. Trying to relax is absurd. Futile. There has to be a better way. So then I stop trying so hard, and I wait to see if it just happens, and it does! I start to relax! And then I remember there is so much left to DO, and the guilt creeps in. Back to square one. It’s a vicious and annoying cycle.

But! I have coping mechanisms for exiting the cycle. I crochet, I read, I make soup, I pray. Soup is nice, but prayer works best.

Do you know what I think it is? What’s so hard for me? I worked for so long, so many years at jobs where you got up every morning and went to work, that it’s a complete paradigm shift to be home. No one expects me to be anywhere at a certain time. I went from a full schedule to no schedule, and five years later I still haven’t got the hang of it. But I will, eventually.

All this time I’ve been quiet on the blog I’ve been busy in real life spending time with family and friends. Good, quality time, and it’s been really nice. We had some awful winter weather here in Michigan and the kids missed a lot of school, so it was fun to have them home with me even if it messed up my daily routines a little.

So that’s all I have for now, folks. Just a partially muddled brain dump. I hope you’re all having a great day today. It’s Friday! For most of you working people that means the weekend is almost here! Hurray!

“My first job was working in an orange juice factory, but I got canned…couldn’t concentrate.”

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?

Drop me in the river

My daughter and I went camping last weekend. We left on Wednesday and came back Sunday so it was a little more than a weekend. My kids (and sometimes me too) have camped with the church my dad was pastoring for the past four or five years. He is no longer pastoring the church because he is retired, but the people really bonded with us and invited us back this year. I’m so glad we went, and I hope to join them in future years, but the whole time I was there I was dreaming that we could do similar trips with our own church family back home. Someday. We’re still growing. Right now we do a camp thing but it’s just one night and it’s held on one of the family’s properties. Also, my family has not yet been able to go. Conflicting schedules and all that.

Anyhoo. The camping trip for me consisted of a lot of relaxing on the porch of our cabin, crocheting and reading. The occasional walk around the campground to chat with people. I did not see much of my daughter because she was off riding her bike and playing with the other girls. One of the girls had brought about a dozen headbands with mermaid sequin cat ears, so they each wore a headband for the duration of camp. They dubbed themselves the “kitty cat club” and I can’t even tell you how that warms my heart. That all these young girls so quickly bonded. All of the mothers and grandmothers were touched to see their bond and we hope to keep them all in touch by good old fashioned snail mail. Perhaps they can remain friends throughout school, and make appearances at each other’s graduation parties. The last night of camp they all sat around and cried because they were sad that camp was ending and they wouldn’t see each other again for a very long time, if ever.

The first full day we were there we went for a canoe ride on the river. It was so wonderful and peaceful. Until the very end. Just at the end where everyone docks we hit a large rock or log and the current of the river yanked us over. Y’all, I was so freaking scared. I saw Natalie and her friend floating away towards the dock, and then I saw my AquaMic, my waterproof case for my cochlear implant, floating away. It had come off my head and life vest in the fall, and I was struggling to catch it before it was lost forever. It took a couple grabs but I was able to secure it and get back to shore. That’s when I saw my shoe floating away. Gah! Just a shoe, I know, but still. One of the older boys at the shore, or the gentleman who had been steering our canoe, I’m not sure, was able to get to where the shoe was and grab it for me. I did not want to have to walk around camp the rest of the weekend in flip flops. But really, I was mainly happy to be on dry land and could see that Natalie and her friend had made it safely to shore as well. When I walked over to her, she was almost in tears. She said she thought she was going to lose me. That’s when I realized that I must have put on quite a spectacle of fear when I was trying not to lose my precious cochlear implant. I felt really bad but she got over it pretty quickly once we went and got ice cream, so it was fine.

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Oh, I almost forgot about my phone. I was wearing my running belt to hold money for ice cream and my phone in a Ziploc bag. I took it out at the ice cream shop to check it and realized right away that it was not doing well. Those Ziploc bags are not airtight, I guess. Or I hadn’t closed it tight enough. I freaked out a ton because my phone is my connection to the world, as I’m sure it is for most people, but my nextdoor cabin neighbor had rice that I was able to leave the phone in for the remainder of camp. It didn’t fix it completely, as I still can’t use my “back” button unless I use the phone’s stylus, but it’s otherwise fine. Answers calls, sends texts, my books are all still there. It even charges normally. So it’s only minorly disabled. Kinda like me, you could say.

The day after that canoe event we had a tug of war between the guys and gals. The tricky thing is that they do tug of war in the river. It’s shallow at the shore but it’s quite rocky and the rocks are sharp and slippery. I tripped/slipped on a fairly large rock and bruised my shin pretty well, and then went on to assist the girls in winning a match. When they made us switch sides it was a different story because that’s where all the rocks were so it was almost impossible to gain a good footing. They tried to get me to join them the following day for a rematch but I told them no. That river and me were broke up and I had no interest in going back for more abuse.

I was pretty wrecked by Saturday afternoon, and kind of ready to go home. My legs weren’t moving right, I had bruises and pulled muscles all over the place, and I missed my shower. So I’m very happy to be home, but my body is telling me it’s still not recovered from all the activity, so I’ve dubbed this entire week a Week of Recovery. I’ll be resting as much as possible, with the hope that I’ll be back to working conditions by Monday.

 

Running out of gas

I think this week I’ve been approaching a wall. Lately I’ve been doing really well, energy wise, but this week I’ve noticed myself dragging quite a bit more. I am not the Energizer Bunny. Monday I slept until 11:11. That’s about 4 hours later than usual. Every day I debate whether to push myself or to take the hint and rest. I feel like I’ve found an okay balance between the two options, but I still have that nagging feeling that I need a major reset. Each night I go to bed hoping that night’s sleep will be the reset button. Maybe tonight! We’ll see.

Oh! I’m running a fun 5k on Friday night. It’s not chip timed, so it’s not exactly competitive. However, everyone will have squirt guns so it should be fun. I’m a smidge nervous because I won’t be able to wear my cochlear implants, but I’ll be running with a friend so I’ll have her to keep an eye out for me in case anyone is shouting at me to move aside or something.

I’m still seeing a counselor for my anxiety and she’s still really helping me. I don’t go as frequently now but I still have her suggestions to take with me throughout each day, and I’m constantly analyzing my inner thoughts to retrace how I got to each state of anxiety, and that’s actually really helping. I tell myself a lot of lies, apparently. So it’s good to be working that out. I’m taking every thought captive, just like that Bible verse in 2 Corinthians. Make each thought obedient to Christ, as in make sure it’s truth!

I am making a LOT of new friends at our church, and that’s been exciting. It’s nerve-wracking at first, because it feels scary to put myself out there and introduce myself to new people who didn’t know me prior to my hearing and vision loss. It doesn’t help that I keep introducing myself to people I’ve already met. The handful of people I’ve done that with don’t seem to mind. They just smile, shake my hand and say “we’ve already met, but that’s ok!” I’m leading a Financial Peace University class in September so I’ll have even more opportunities to re-introduce myself to people! Keeps life interesting, I guess.

Summer is half over, I know, but I’m just now getting the hang of it, I believe. We have a couple trips planned in the next month or so, stuff the kids can look forward to, but with enough down time in between to recover from all the fun we’ll be having. And then before you know it the kids will be back in school. Our son is starting middle school this year so he’ll be on an earlier schedule than his sister. He’ll have to be at the bus stop by 6:30, so we’ll have to get him used to waking up super early. I have been joking with him that he’s on his own here, that no way I’m getting up that early, but we all know I am too much of a control freak to let him fly without any supervision. So I’ll have to start getting used to being up early, if only to supervise for awhile.

Well, I have CrossFit in the morning so I need to sign off for now. Good night bloggy people!