Category Archives: Family

Abbey trip reflections

So, folks. I’ve gotta get this nagging voice out of my head, so I’m just gonna spill it. I said I would talk about what I heard at the Abbey almost two weeks ago, so here goes nothin’.

The biggest revelation, the biggest message I heard God speaking to me was that I need to keep sharing my stories, and with that I need to get back to writing my memoir.

We were sitting in the chapel, following along with the Psalms the monks were chanting, and they came to Psalm 40, which I recognized to be the one given to me when I lost my hearing. Given to me, as in, I heard the song “Jesus, Lover Of My Soul” one time in a movie many years prior, and then it was all I could hear in my head when I could very literally hear nothing else. That song, that Psalm, became my mantra for over a year. The words “taken me from the miry clay” resonated with me on so many levels.

Reading the Psalm in church got my attention, but that’s not the part that spoke the loudest to me. What spoke to me most was when I went back to the cottage and read the Psalm for myself. Verse 3 in particular, and I immediately felt God saying that I needed to continue writing – “singing my song” – so that people will see Him and put their trust in Him.

He put a new song in my mouth,
    a song of praise to our God.
Many will see and fear,
    and put their trust in the Lord.

What my sister helped me see was that writing my memoir is much like training for and running a long race. It takes time, it might not look pretty, but the most important thing is that you keep working towards the goal. The key is consistency. So even if it’s just a half paragraph a day, or even every other day, it’s okay. I just need to be committed to not quitting. I will get this memoir written. It’s going to take a lot of patience, and you can bet I’ll need a lot of help, but dang it I’ll have it done eventually.

I have over 7000 words written at this point, and I’m kind of stuck as to where to go next, but I’ll keep chipping away at it. I’ve told a lot of small stories to make up those 7000 words but there is still a surprising amount of detail left to tell in order to make it a complete story. Some of those are details I don’t possess, memories that aren’t mine to tell because I was either sleeping or only somewhat conscious, but that’s where I’ll need to utilize my new “asking for help” skills.

It’s quite intimidating, the idea of writing a book. I have author friends and family so I know it’s possible. Normal human beings do it all the time. I just worry that it’s not possible for me, because I have cognitive struggles from the M.S. But that’s the primary thought that’s kept me from working on the book, so I need to stop thinking it.

Cognitive struggles due to M.S. Big Fat Sigh. This is probably one of the most difficult parts of the disease for me to accept. I was always the smart girl, the know-it-all, the straight A student. “That Mindy, she’s so smart”. I never had to struggle to understand things. That 4.0, smart girl persona? I let that define me, and now that that part of me is being chipped away, it seems my self-worth is being chipped away right along with it. This is painful to write about, but maybe it needs to be said, because as I’m writing this I am getting rather emotional. And in my experience, that lump in my throat is usually the first step towards healing a deep wound I have been ignoring for far too long. I need to swallow that lump, along with my pride.

I struggle daily with forgetting things. I know people say this is typical of aging, but I know it’s more than that. I also struggle with comprehending simple concepts, whether they are new to me or not. I struggle with holding conversations and putting ideas together. I struggle hard with writing, and this is the most heartbreaking. I have always loved writing. I have kept a diary since I was a little girl. I started blogging back when you had to write your own code. I journal thoughts in my head throughout the day, and sometimes those thoughts actually make it to my written journal. Just today, my laundry folding was interrupted by this blog post forming itself in my head, itching to get out.

Writing is part of who I am, so when I set such an ambitious goal as writing a memoir, having never written a real book before, you can imagine it’s frustrating to feel like you are unable to make any progress. When your brain just refuses to make the necessary connections, it’s very discouraging.

But! I read a meme recently that reminded me that when God calls us to something, he factors in our failures and frailty. So I’m taking that as truth and leaning on Him, always and forever.

Busy day, busy week

I told a friend the other day, “I don’t know how you people do it!” And by “you people”, I mean those who do lots of things, all in succession, repeatedly over time. Because dang. I am managing, it’s fine, but I lived in my warm cocoon of permanent disability for so long I almost forgot what it was like to have a full schedule. Like normal people.

I’m still permanently disabled, of course, but my new energy levels allow me to do considerably more, and I’m just now feeling like I’m getting the hang of it. Although I have been feeling lately that my fatigue is trying to creep back in and I am almost certain it’s because I haven’t been running. I plan to rectify that situation soon.

Today is an especially busy day because I had a dentist appointment this morning to get a crown set up, and this afternoon I have my regular infusion for my MS medication. It’s noon and my face is still half numb from the dental procedure this morning so it was very strange eating my lunch. I’m tempted to get a second cup of coffee but if I do I’ll have to do drink it through a straw. I’m kind of looking forward to the infusion because it will be a forced opportunity to take a nap. Not that I ever need forcing, of course. Naps are the bomb diggity.

My daughter turned 10 on Tuesday (yay for double digits!) and she is having a few friends over Friday night for a sleepover so I’ll be spending the day tomorrow doing some catch up cleaning and preparing the food for dinner. She chose tacos even after my multiple suggestions for ordering pizza, so I guess I’m cooking. Anything for my birthday girl. We all love tacos, so it’s cool. Before dinner though, we’re taking the girls to Playing Picasso so they can do some pottery painting. Then we’ll go back home and eat tacos, then send the girls in the basement so they can watch Harry Potter and be their silly selves without judgment from big brother. Birthdays are fun, don’t you think?

I’m hoping to catch up more on writing in the next few days, to tell you about what I heard God speaking to me at the abbey last weekend, and maybe some other random musings about that habits I’m hoping to hone (like writing). Growth and change, but all good stuff going on here.

St. Gregory’s Abbey 2019

Last weekend my sister and I traveled south to stay at an Episcopalian monastery. This has been an annual tradition for us, and this was our 9th year. One of the ministries of this monastery, besides constant prayer and worship, is to provide a place for others to retreat from life, reconnect and reset. Pushing the reset button looks different for everyone, but for my sister and me three days of time alone and away from the hustle and bustle is the way to go. We are both very introverted, so time alone definitely recharges our batteries.

Every year we have stayed in a cottage at the back of the property. They do have a dormitory near the chapel and main building, but we have never stayed there. Well, I have, on solo visits prior to our annual tradition of going together. We enjoy the solitude of St. Benedict’s cottage, away from the monks and the other guests (except when we are attending chapel services). We also really enjoy having a kitchen for preparing our own food, which you don’t get with the dormitory. We started this tradition with elaborate menus and recipes, and as the years have gone by and we get older (and perhaps a little lazier) we have reduced the complexity of our menu plan. We have never felt hungry or lacking, and we always go home with food leftover.

Every year has been different, but also much the same. Nothing about the monastery has changed since we started coming. The cottage looks identical now to the cottage we stayed at our first visit in 2011. The schedule of church services is the same, and the chapel smells as it always does, of heavenly incense. The lack of change is strangely comforting. What is different for us every time is how much we are dealing with in our lives, good and bad. Every year one or both of us has had challenges we are battling, and the beauty and the gift of these weekends is that we are able to really look inward and upward for answers, reassurances, and guidance.

I can’t say what these weekends mean to my sister, but for me it’s a time to reconnect with each other, and also with the Lord. I have great conversations with God on these weekends. Not that I don’t have conversations with Him at other times, but the difference at the Abbey is that I do a LOT more listening than talking. And boy, does He have a lot to say to me. I plan to share some of what I heard from Him in a later post, so stay tuned for that.

Overall it was a very transforming and therapeutic weekend, and I look forward to many more down the road. What sorts of things help you reset and recharge?

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!

Cedar Point 2019

Last week we made our now annual trip to Cedar Point amusement park in Sandusky, Ohio. This was a favorite place for Mike and me when we were kids, and it makes us pretty happy to be able to share the magic with our kids. The odd thing is that they each love it for different reasons. Luke loves all the thrill rides, and Natalie loves the petting zoo. So while the boys run around riding rides, the girls mosey and shop and make friends with camels and tortoises.

You can see in the first picture below that we had to get a photo to show where we were while the boys were waiting in line for the Steel Vengeance. We were happily exploring the museum, NOT riding the Steel Vengeance. When we got a closer look at the model of the ride (you can see it behind us) and the 90 degree drop it makes, we knew we had made the right decision.

We have always been able to buy our tickets ahead of time and get two for the price of one, but this year Mike found us an even better deal that included drink passes. We all got bracelets that allowed us to get free fountain drinks all day long. This turned out to be a really great thing because they have refreshment stations all over the park, and they don’t just serve soda. They had fruit juices and teas as well. I’m not a soda drinker, but I do love my sweet tea, so this made me very happy. Also, it completely wiped out the begging that’s gone on in the past when the kids are thirsty (as they should be, walking around in 80 degree weather) and Mom doesn’t want to spend $10 on enormous fountain drinks they will likely not be able to finish drinking. With the unlimited drink plan they gave you small cups, so you only got what you needed at the time and by the time you finished it, you were close enough to the next station so you could just get another.

ALL that to say, we never felt dehydrated the entire day! So hurray for that.

Also, isn’t my husband cute with his Coca-Cola logo looking Guns & Ammo shirt? I tried to get a nice photo of us but our goofy daughter photo bombed us. That picture on the right was taken at the end of the day and Natalie was trying not to smile. Her dad always manages to cheer her up when she’s trying so hard to be in a bad mood.

We finished the day with a night ride on the carousel, which was both beautiful and terrifying. I’m not crazy about being up so high in the air and this was the first year I went on it without the benefit of Zoloft. That’s another blog post altogether, but let’s just say I came really close to a panic attack at the top of the carousel. Thankfully Mike could see I was not okay and he held my hand and reassured me we would be okay. I survived, obviously, and will now be working up the courage for next year’s carousel ride. Because tradition trumps anxiety, and also I’m a smidge sentimental.

My legs held up really well all day. Towards the end my knee was hurting a little so I put my knee brace on and that helped some. My balance was suffering and my left foot felt like it was dropping so Mike held my hand at that point in order to give me some stability. I walked a record 21,693 steps that day and nobody had to carry me to the truck, so I call that a win. Everyone had their brand of fun and it was a great and memorable day. I look forward to going again next year!

Just an overall great day

Today was a really great day. Nothing out of the ordinary or spectacular, it was just a good day, so I wanted to share before I head off to bed.

The kids and I went to church this morning. Hubby was at a shooting competition so it was just the three of us. We had been preparing to ride the bus, but were able to secure a ride with the pastor’s wife at the last minute. So while we were a bit excited about doing something new by riding the fixed route bus, we were thankful we didn’t have to get up super early to catch the bus. We’ll hopefully try again on another day before the summer is over.

Church was great, as usual. I love my church family, because they are just like that: family. I was able to have a bit of time after the service to catch up with the some of the other women and invited two of them to BSF in the fall.

The afternoon was spent relaxing, having lunch with the kids, chatting with my sister, and doing a bit of bookkeeping for the church. By the evening, after dinner, I was feeling pretty sluggish and the sun hadn’t set yet, so I threw on some running clothes and went for a quick two miles around the neighborhood. I’ve been doing a pretty good job with resting my knee and doing the exercises the doctor gave me, and tonight’s run really showed me that it’s paying off, because I only took a few brief walking breaks and I had no knee pain throughout the run! Even after I got home I didn’t feel any pain. Not only that, but my pace was pretty strong for the time I was running, at around 11 or 12 minutes, which is pretty fast for me. I usually average closer to 13 minute miles. So I was pretty ecstatic about that run, and it really gives me hope that I’ll still be able to complete the half marathon in 56 days!

I’m excited about the upcoming race, but I’m even more excited about a lot of leadership opportunities I have coming up. Leadership is not necessarily my comfort zone, but I feel like God has really been working on me in this area, and helping me to step out of my comfort zone little by little. I can still be my introvert self and interact with others. I really enjoy getting to know people and hearing their stories. In the fall I’ll be leading a Bible Study Fellowship group, a discipleship group through my church, and Financial Peace University. That sounds like a lot, but I’m hopeful I’ll be able to keep a good balance and manage my time well enough to handle it all.

Shifting gears here, but I recently saw the dermatologist and I thought it was just going to be a follow up to get refills on the antibiotic for my rosacea, but the doctor I was seeing left the practice so I was seeing a new one. Not new to the practice, just new to me. I was very reassured from the minute he walked in the room because he actually examined my face under the light, and the last doctor never did that, which I always thought was odd. This new doctor is changing up my medication a little bit and putting me on something stronger, with the hopes that eventually I won’t have to take the antibiotics. He also gave me a prescription for a cream that should help the specific problem areas on my face. So that was a really positive visit and I went home feeling hopeful that we can get my face cleared up even more.

So the last couple weeks were filled with a couple doctor’s visits, my monthly Tysabri infusion, and lab work to make sure I can still take the Tysabri. Then in a week or so we go to the dentist for cleanings, and take the kids to the orthodontist for evaluations. Not exactly your idea of summer fun, but you gotta do what you gotta do. Being healthy is super important to me because if I didn’t have this energy, I wouldn’t be able to do any of the volunteering that I’m signed up to do. So I’m staying focused (i.e. mildly obsessed) with the running, daily exercises, eating my fruits and veggies, drinking my greens, and taking my vitamins. Staying healthy for this M.S. girl is kind of a full time job.