All posts by Still Mindy

Forty-something, married with two kids and a dog. Living every day to the fullest with multiple sclerosis, impaired vision, and deafness. Couldn't make it without my Savior, Jesus Christ!

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?

Friday the 18th

I feel like I’ve not been writing enough and I don’t want to let myself go too long without an update, so here goes.

First, I think a lot of my absence here is a result of not having quite adjusted to my new routine, and also not having a quiet, comfortable place to sit and write. I prefer writing with my laptop, but I rarely open it nowadays unless it’s for work related purposes. I have a corner in my living room that used to hold my laptop and crochet projects, and this is where I would unwind and tap out my thoughts on the blog. But now that corner is cluttered with work things, so I guess you could say my happy place is tainted. So what I decided to do is to untaint it. I’m decluttering my bedroom upstairs, where I have a charming secretary hutch and filing cabinet. So that area will now be my work space, and the living room corner will soon be restored to its peaceful, inspiring state.

Our dog, Piper, was sick this week. She had peed in the house a couple times, on carpeting, which she never does. She’s been known to piddle a little on linoleum when she’s excited, but this was different. Then we also noticed her tail was bent downwards, when it’s normally fully up and wagging. Dr. Google informed us that the tail was likely a sign that she was in pain. We called the vet and they said she probably had a urinary tract infection and to make sure she’s getting lots of fresh, clean water, and it would likely clear up on its own. Sure enough, within a day of monitoring her water quality and intake, she was back to her old self again. I just felt so bad that she was in pain. I’ve had UTIs before and the pain is no joke. She turns 5 tomorrow and we’re just happy she won’t be spending her birthday in misery. Because she knows it’s a special day, of course.

Life is slowing down some but I expect it will pick back up soon enough. I have lots more to update but I’ll probably do that once the office space shuffling is complete and I can sit and type on a normal keyboard. This phone typing I’m doing right now is annoying.

I hope you are having a lovely day and we’ll chat again soon!!

Cautiously optimistic

https://multiplesclerosis.net/living-with-ms/differences-after-ten-year-mark/?utm_source=facebook.com&utm_medium=promoted&utm_campaign=Aubagio-CAS&utm_confid=soviec04u

This article came through on my Facebook feed yesterday and I found it interesting because this week marks 10 years since my MS diagnosis. I may be off a little on the date but I’m almost certain it was early October. It was a month or so before my daughter was born, which was 11/05/09. So, close enough.

Anyway, I find it helpful sometimes to reflect on how my mindset has changed, whether it’s better or worse, or both. Most of the time these days, it’s better.

Ten years ago I saw myself certainly being wheelchair bound by now, or at least very heavily reliant on my walker. But instead I find myself fully mobile. I have stored away a walker and 3 canes that are for sure covered in dust by now. My husband and I have talked about getting rid of them altogether, because it’s been so long since I’ve needed them. I am not quite sure I’m ready to take that step.

See, if I’m being completely honest, that suggestion frightens me. Yes, I’m doing well and I’m running races, but the nerve damage is still there, and this article reminds me of that sobering fact. I can run all I want, eat all the vegetables my heart desires, but I can’t heal the scarring that has been done to my nervous system. Only God can do that.

I want to live courageously, without fear of the future, because it’s so much better than living in fear, which is where I was 10 years ago. Heck, even 6 year ago I was there, stuck in fear mode. My body and brain were shutting down on me as a coping mechanism. But that is no way to live, and I am fairly confident those days are behind me.

As I’m sitting here writing I’m gaining courage to let go, so pictured below I present to you my canes. From left to right: The gray cane is folded for easy transport, The 2nd cane was actually my first cane following diagnosis and has ladybug stickers on it that I applied myself (Bug was my nickname through high school and many years beyond), and the last cane is covered in a paisley pattern, because I love paisley. The walker is buried in the basement and not worth retrieving for this photo, but I’ll tell you I put flame auto decals on it and named it Speedy. So you know it’s cool.

I don’t know about getting rid of the walking aids. There is still a quiet voice back there whispering “what if?” and they do hold memories for me. However, they are not very joyful memories, so Marie Kondo would encourage me to let them go. Maybe I’ll just keep the paisley cane, because it’s just so pretty. It does spark a teensy bit of joy. 😁

No, I’m still undecided. I’m going to go for a quick run and see if I can make up my mind!

Finding Contentment

I’ve been fartin’ around on Facebook all morning, and then I did some filing, put away clean dishes from the dishwasher, and now I’m letting my phone charge back up so I can go for a run this afternoon. I could really go for a nap but I pretty much always feel better after a run so I’m opting for that instead.

I’ve allowed myself to get really busy with all the commitments I took on, and I think I’m finally getting a handle on managing it without moving around like a headless chicken. I’m finding the key is to allow myself to relax from time to time, and when I say that I mean REAL relaxing, not the fake kind. I’m giving myself permission to sit with my feet up, read a book or crochet, sip some coffee, and NOT feel guilty. It’s really nice, but it’s strange how difficult it is for me sometimes. It does take some self-talking to be totally okay with it. Otherwise I’m just pretending to relax. I may be sitting, but I’m secretly mulling over all the things I “should” be doing at that moment. So the Real Relaxing is nice. Very therapeutic.

I had an interesting thought yesterday while listening to the lecture at Bible Study Fellowship. We were studying the story of the lame beggar at the temple gates in the book of Acts, and the lecturer said that when the man was healed, his life became better because his disability was removed. Something about the way she worded it struck me, and a voice in my heart was asking,

“Mindy, would your life be better if your disability was removed?”

I honestly believe the answer to that question is no. As much as I grieve what I’ve lost, I am even more grateful for what it has added to my life. It has made me a more patient and compassionate person. It has strengthened bonds between my family members and my friends. It has introduced me to new people and new ideas. It has stretched me in so many ways to move outside of my comfort zone. But the most important thing? It’s that God is glorified through all He is doing through me. Because it’s certainly not me. I’m just following His directions. That is the most valuable outcome of all this, and what I have been praying for from the beginning.

As I’ve struggled over these past 6 years with my disability I’ve been trying to find a new normal or a base comfort level. What I realized yesterday is that I am finally at a place of contentment. I am finally at home again in this body and I am content to be where I am. Fully and completely. Hallelujah. Amen?

John 9:3 ESV “but that the works of God might be displayed in Him.”

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: