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!

Going back in order to move on

Okay guys. I have intentionally not been blogging because it was winter break and I wanted to be more present and “in the moment” as I spent time with my families over the Christmas and New Year festivities. That mission accomplished, I’m moving on to the next big goal.

I had previously said (maybe not here, maybe just in person to other people) that I was going to run a full marathon in the fall of 2020. But while I contemplated all the training necessary for such an endeavor, I realized I had another big goal I was wanting to accomplish this year. I want to finish writing my memoir. This is very important to me, as I’ve got a lot of stuff to say about my dramatic entrance into this life of disability that I feel God is calling me to share. So I decided I can’t focus properly on both at the same time, and I had to pick which one to work towards first. I’m choosing to write.

I had started writing the memoir a long time ago. I was able to write about what happened, but after 6 or 7000 words I was stuck. And the real problem is that the facts of what happened is only the tip of the iceberg. I need to write about how I felt at each turn, and how we all coped. I need to get real and raw. So even though I’m up way past my bedtime, I made a point to just sit and at least spend 20 minutes writing something. I just started writing, and I didn’t bother with editing or proofing as I went. And here it’s an hour later and I’ve written something, but also I’m in tears. Because I am revisiting some of my darkest, most heartbreaking days. I understand now why I was procrastinating on this. Because I almost have to relive the pain in order to share with others how I made it through. I need to go back to that place if I want my readers to go there with me.

This is going to be really effing hard, folks. Please pray for me, that God would continue to give me courage to rip open these wounds in order to write these words. These words that only He can give me. Because He has called me to share my story, and it is my understanding that He equips those whom He calls.

Focus

Did I mention I went to see a low vision specialist a couple weeks ago? My neuro-ophthalmologist had recommended it, since my vision has remained stable over the past six years. I’m not sure why he waited so long to suggest it, because I could have used the help a lot sooner, but that doesn’t matter. Better late than never.

So I went to see this low vision specialist, Dr. Putnam, and I learned a lot. I learned that what I’ve been doing up to this point to manage my low vision has been helpful, in that I’ve adapted. However, I also learned that in many areas rather than adapt, I avoid. Take using cash, for example. It takes so long to figure out what denomination a bill is, or what type of coin I’m holding, that I just use my debit card for everything. Or if cash is my only option, I’ll ask one of my children to get the cash for me. Who knows how many other things I’ve come to avoid because they are too difficult?

The biggest thing I’ve avoided is driving. I’ve never actually had a doctor tell me I couldn’t. I just don’t because I assumed I can’t because I have low vision. When it was time to renew my license, rather than taking the required test, I opted for the state identification card instead. When doctors ask me if I drive, I chuckle. Because to me it seems so obvious that I CANNOT drive. So when this low vision doctor asked me if I drive, I reacted the same as always. I chuckled and said “No, that would be impossible.” Her response surprised me. Now this doctor has seen my visual field tests. She knows very clearly what I can and cannot see. And yet she said to me, “Don’t say it’s impossible. I don’t want you to get your hopes up too high, but I also don’t want you to count it out. There’s a lot we can do. Even if it’s restricted driving, it may be something that’s an option for you.”

This idea floored me, and I haven’t stopped thinking about it since. I’ve lost about 60% of my field of vision, but the other 40% is clear, as long as I’m wearing my glasses. Is 40% enough to safely drive a car? Dr. Putnam seems to think it could be, or it’s at least enough to warrant exploring the idea.

Speaking of my glasses, a year and a half ago, I bought a new pair with the recommended progressive lenses. The low vision doctor believed that the progressive lenses were not helping me, but were actually hurting me. The way they work, I guess they kind of block out or distort a good portion of that 40% where my eyes can actually see. Which would explain why I had secretly felt extra blind for awhile. I just figured that was the way it was going to be, and I just moved on. But now I have these new lenses, with an updated prescription, and without the progressive lenses. And let me tell you, there is a remarkable difference. It was a little strange the first day wearing them, but now that my brain has adjusted to them I can tell you I see so much better. Not close up of course, but that’s okay because I’m nearsighted. Seeing far away is greatly improved, and that has me thinking again about what Dr. Putnam said to me about driving.

My husband asked me about this today, the idea of me driving again, and I had to be honest, it scares the crap out of me. BUT – I’m trying to open my mind up to the possibility, just like Dr. Putnam encouraged me to do. I’m trying to ditch my all-or-nothing thinking here. Digging up the idea of me driving that I had successfully grieved and buried in its grave. It’s a big idea. Scary too. But I changed my mind once about this, I can change it back. It’s just going to take some time. We are deciding to reopen the chapter on this aspect of my disability and give it more thought and prayer.

So that is the exciting news around here. We have lots of other things going on but I won’t bore you today with the details. In addition to family and kid stuff I’m remaining semi-focused on running and writing, but that’s probably another blog post of its own. Stay tuned, I’ll try to be back at least once before Christmas. Happy Wednesday and peace to you, my friends.

Reading and Running

Lately, I haven’t had anything very inspirational I’ve felt like writing. So I just haven’t been writing. For fear of boring you with all the details of my day to day. But the alternative to writing the mundane hodgepodge is to not write at all, and that’s maybe not great either. Because as I learned in a recent audio book I just finished “reading” (The Shallows, by Nicholas Carr, if you love science!), your brain is like a muscle. If you don’t use parts of it, they shrink and it becomes harder to access them down the road. So I’m exercising my writing muscle by writing even when I don’t have anything to write about. And as I’m writing, I’m sure something will come to mind. That’s always how it seems to work, anyway.

I’ve really been craving dark chocolate. I don’t know why I never keep any around the house.

I have not been running these past couple of weeks. I think after the bout of fatigue following Thanksgiving, I sort of fell out of the habit. I’m hoping to get back into it this weekend though. If the weather cooperates, of course. Treadmill running still sucks.

BUT! I do want to tell you how the Turkey Trot 5k went, but I want to be careful not to toot my own horn too loudly. So you know I was training, sort of, trying to increase my speed, and was hoping to beat my previous PR of 38:24. But even if I didn’t beat my PR, this was a memorable race. I ran it with my son, who is much faster than I am. I wished him luck and left him at the head of the pack with all the seriously fast runners, and scooted back as far as I could because I knew otherwise I would get trampled when the race started. This race was huge. I think the final count was around 5000 people. Maybe not large by other people’s standards, but it was by far the biggest 5k I had ever run. So with that many people the energy was pretty awesome.

The gun went off and I started running, and people immediately started zooming past me. I would have moved to the side to get out of the way, but I was so worried about tripping I stayed in the middle of the road where I knew there would be fewer potholes and cracks. Did I mention this was the first race I have ever run solo? No guide runners, no sign on my back to alert people that I was a deaf/blind runner. I had this sort of overwhelming sense – throughout the race – that I belonged there. That I was a real runner just like the rest of them. Note that I had not realized until this moment that I ever felt like I wasn’t one of them. So this was a brand new revelation, and I believe it is what propelled me forward, as fast as my feet would let me.

I was getting periodic updates from Runkeeper to tell me of my current speed, but I wasn’t paying attention enough to calculate what my average was looking like. I was just trying to enjoy the moment. So when I reached the finish and saw that my time was just coming up on 34 minutes, I was flabbergasted. My finish time was 34:03 – a full four minutes and 21 seconds faster than my last PR in May. I still don’t even understand how that is humanly possible. Not for me, at least, a woman with M.S. And certainly not in that short of a time period.

I’m still in a mild state of disbelief over the whole thing, but I’m now finally able to process it a bit more. I think the difference for that race, and my speed training on the treadmill leading up to it, is that I dared to run a pace that was just a bit past my comfort zone. Then when that felt comfortable, I pushed a little harder. So if I can just remember to push myself a little bit each time I’m out there, push the envelope so to speak, I know I can complete a full marathon next year, which is my next big running goal. I just have to be careful to be wise about it, and not push myself too hard or too fast. Know my limits, listen to my body and rest when it needs rest. I’ve learned so much this year about my capabilities, both mentally and physically, that I feel ready for this next step.

So I guess this post ended up being mostly about running. Sorry, not sorry. What else? Christmas is coming! I’m not ready, but who ever is? I’ll be ready when I need to be. I’ve been keeping busy with Bible Study Fellowship, bookkeeping for the church, and taking care of the home. Sadly the home sometimes takes a backseat to the other stuff but I’m working on fixing that. In my down time, my relaxing time, I’m doing a lot of crocheting and reading. I have a growing list of books I’ve started reading but couldn’t finish before the library’s digital copy expired, so I’m one by one working through knocking those off the Goodreads list. Not to say that like it’s a chore or anything. I still love my books.

That’s all for now folks! Tell me, what’s your favorite book to read over the holiday season?

Official Break-up

My brain is finally letting me sit and truly relax a bit so I have a hot cup of coffee next to me, my laptop, and my cozy blankets. Yes – blankets – plural. Because snuggling up in a recliner with a couple cozy afghans is one of my favorite things about the fall season.

I learned this past week that dairy and I can no longer be friends. I learned it pretty quickly with bacon, and I accepted it graciously and moved on. But dairy has been a little harder. I gave up eating meat and eggs and dairy, all at different times over the years. Over time I have reintroduced things here and there, paying close attention to how my body responds to each food. Eggs seem to be totally fine, which makes me happy because eggs are great. Some meat, as long as I don’t overdo it with quantity, is fine. Almost no effects at all. Bacon, however, wrecks me. Stabbing, crippling pain and a headache that won’t quit. Legit wrecks me and leaves me useless for almost a day. So I don’t even mess around with bacon, and I’m okay with that.

Dairy, however, was the hardest for me to give up, and I admit I’ve been flirting with it a lot the past several months. I’ll snack on some cheese here and there, but nothing serious. Then Thanksgiving came, and with it lots of leftovers from the day’s meal, including a carton of half and half, my formerly favorite coffee additive. Sooo for the last five days I’ve been indulging in coffee with half and half in it. This morning as I rolled out of bed and padded down the stairs to make my morning coffee, it occurred to me that something had changed. I have slowly been sliding back into a state of fatigue. I’m having a harder time waking up, and my legs are heavy. It’s as if my body just doesn’t want to move. Also, my face has been breaking out more than usual, even with my new rosacea treatments. I kid you not, I have a zit right now IN MY EAR LOBE.

I’m blaming all of this on the half and half. And maybe the whipped cream and pumpkin pie. Because nothing else has changed, that I can think of. I’ve been without the debilitating fatigue of M.S. for a blissful long time now, coincidentally ever since I stopped consuming dairy. For it to show up like this so quickly, I believe, is no coincidence. So, I’m dumping out the half and half. It pains me to feel like I’m wasting it, but the alternative is to drink it and keep getting sicker. I think “wasting” it might be the wise decision here.

So you could call this my official break up with dairy. No more of this on-again off-again business. We’re done. I’ll remember fondly all the late night ice cream binges and the burritos covered in melted cheese. We had some good times, but it’s time to part ways. To commemorate this day, I leave you with this haiku:

Dairy, we had fun
Now you make me sick and tired
I must say goodbye

Running With Dogs

I’m seriously not trying to draw pictures when I run, but this map looks like the profile of a dog. Do you see it? The pointy little ears and turned up nose?


But! What’s even cooler is that this was my fastest 3 miles, and that was even while running with Piper for the first mile. I’ve been secretly hoping to run a PR at the Turkey Trot on Thursday and I’m starting to really believe it’s possible! My current 5k PR is 38:24 and I would LOVE to come in under that and then go home and chow down on Grandma’s homemade stuffing and corn casserole.

What are you doing for Thanksgiving?

Time Management

All the things. It’s just a challenge managing all the things. I’m sure I’ll get the hang of it, but I’m gonna have to pray real hard about taking on this much again.

I had a long phone call last week with my disability insurance company to review my status. They just like to make sure I’m still unable to work. It’s always fun rehashing the details. She asked how driving was, which is funny, because it was 20 minutes into our conversation and I had already explained to her how bad my vision is. I need my family to read labels for me, I don’t think driving a car would be a wise idea. What stuck out to me about the phone call was at the very end when she asked me the primary reason I wasn’t able to work a full time job, and I answered without even really having to think about it: “because it would take me a week to accomplish what I used to be able to do in a day.” That statement essentially rang in my ears for the next few days. This is why I need to be patient with myself. Everyone around me is so gracious, yet I’m the last one to catch on.

So these responsibilities I’ve taken on over this past year, along with my normal household and mothering duties, are totally doable. One. Step. At. A. Time. I’m just going to keep at it and see how it goes. If I find that the important things are getting missed or done too late, then I know it’s too much and I need to scale back or reach out for help. But so far it seems like it’s been working well. I’m learning how to delegate as well as take breaks. It feels like a whole new way of looking at time management. New to me, at least.

I’m very much looking forward to Thanksgiving this year. We’ve always hosted, so there’s nothing new there, but this year my son and I signed up to run the Turkey Trot 5k in our city the morning of Thanksgiving. I saw that a neighbor of mine was attending, so I asked if we could tag along. I’m really looking forward to it, because this is an experience my son and I can share, even if he runs twice as fast as I do. Thanksgiving mornings are pretty low key for us anyway, because most of the prep work is done the day before. All we do is put the turkey in the oven and then wait for the family to arrive with the rest of the food.

I stopped taking the antibiotic for my rosacea and am using a medicated cleanser and cream instead. I got the cleanser late, because we were having trouble with the pharmacy, but I’ve had it for a few days now and I can tell already that it’s clearing up my skin. It’s made with sulfur so it smells not so awesome but I don’t mind. If it works, it’s worth it. I’m just happy to be off medication. The only pills I take now are vitamins and supplements, and that means it’s not the end of the world when I forget to take them. Which happens often. I’m trying to get a morning routing set with my powdered greens and my coffee, and hopefully now my vitamins too.

I’ve been reading a lot of good books lately. Most of the books I read are digital library books that I only get for a set amount of time, and I often forget to read them until they give me a 3 day warning that they are about to expire, so I have a collection of books I just didn’t finish in time. Which is why if you look at my Goodreads list, it looks like I’m reading like it’s my J.O.B., but really I’m only reading one at a time. Right now I’m reading (actually listening, cuz it’s an audio book) The Shallows, by Nicholas Carr and I’m only on chapter three but already it’s a little frightening. It’s about what the internet is doing to our brains, how it affects the way we think and process information. Very interesting so far.

I expect this weekend to be pretty chill so maybe I’ll take some time and work on writing my memoir. I was getting overwhelmed with the idea but stepping away from it seems to have helped, and I am more confident in my next steps. I’m going to focus less on the details of what happened for awhile and more on the ultimate message I want to thread through the book. Or maybe I’ll just re-read what I’ve written and fill in whatever comes to mind. Whatever I do, I understand now that writing a memoir can be a long and tedious process and the worst thing I can do is rush the process.

Tomorrow is our leader’s meeting for Bible Study Fellowship so I need to head off for now and start winding down. I hope you all survived your Monday and enjoy the rest of your week!

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.