Category Archives: Visually Impaired

Some Friday Ramblings

**Note, I started this post several days ago and didn’t finish it. I just didn’t feel like I was writing the way that I used to, or would like to, or “should”. All kinds of silly reasons to abandon a post, but whatever. I’ve been trying to hop back into the art of writing that I have loved, on and off, my entire life. After completing that marathon I was exhausted in so many ways and then lots was happening here at home that required my energy and attention, and then Thanksgiving, and on and on with the reasons/excuses for my absence here. I really desire to get back to regular blogging, regular writing. Lots of changes have happened with me over the last two years so I’m hoping “Writing Mel” is still alive here. I believe she is, and we are just dusting her off a bit. Bear with me, por favor. Gracias. Now back to the original post.**

I noticed when I logged onto WordPress today that they had a writing prompt; the question was “what will your life look like in three years?”. Which is interesting to me, because I was just hopping on here to tell you about a discussion I had with my husband recently that was along these lines. We were basically discussing whether we were content with our lives. And if asked that question, I would say that absolutely, I am content. However, if you had asked me 15 years ago if I would have chosen this life for myself, the answer would have been “hell, no.” I would never have chosen to be disabled and unable to work a job. Having multiple sclerosis, being deaf *and* half-blind, simply put – SUCKS. But I’m 10 years into this, and while it’s taken time, I’ve slowly learned to see (not literally, unfortunately lol) and be thankful for the benefits that have come from it. I’ve learned from these struggles. They have made me who I am today, and I love who that is.

I feel like I’m coming into a new season of life. I’m done training for marathons (for the next few years, at least). My kids are teenagers and can feed themselves (and prefer to, actually). The dogs are pretty low maintenance. So now I’m at a point where I’m learning how to rest. I’m learning how to be okay with sitting still. For as long as I can remember, I have had trouble with sitting still. Not that I physically can’t, but that when I do, there is a general unease felt underneath my skin and deep in my spirit. Like I’m “supposed” to be doing something. I’m often noticing my shoulders are hunched up and I need to consciously pull them back down.

I was actually discussing this general unease with a friend the other day, and she expressed how completely opposite she was from me in this regard, and we had a laugh. She seemed like she was saying she rests too much, and finds herself procrastinating. Sounds a bit like we would do well if we came more to the other’s side and met in the middle. But then where would be the fun in that? I love the variety I see in all of my friends and family members. It’s funny to me the things we experience and think are normal for everybody, when really we are all so different in so many ways. It makes life a lot more interesting, and brings us closer together as we support each other in our areas of strength and weakness.

So back to the season of rest. That’s where I am currently. I still have an ongoing list in my head of all the things I want to *do*, but I’m trying to be more kind to myself. While I’ll never regret running that second marathon, I will admit that I made the commitment without full consideration of my limits; physically, mentally, emotionally. So you could say I’m taking a break. Ish. A semi-break. Evaluating what I value most, and then easing those things back in. It feels a little like riding an inner tube on a lazy river. I’m enjoying it so far.

And that, my friends, is a little taste for you of the rambling that goes on in my brain on the daily. You are welcome. See you next time.

The countdown continues

Flat Marathon Mel

And above we have your girl, Flat Marathon Mel. This is basically what I’ll be wearing tomorrow. Unless I change my mind on the way and switch out accessories. I’m going by the forecast so we’ll see if the weather cooperates. It’s looking to be around 50 degrees and dry. The rule of thumb is to dress for 20 degrees warmer because your body heats up while you’re running. I’ve always followed this rile and it works, but it does feel a little like torture in the beginning when you are standing in the cold feeling drastically underdressed. But I know my body, and I heat up quite a bit, maybe more than 20 degrees, so I believe the tank and shorts should be perfect.

I seem to have forgotten why I signed up for this race so I’ll be spending the rest of the night reminding myself. It’s gonna be fun. It’s gonna be worth it. And God has and will give me the strength to keep going when it gets hard. This race represents all of the ways Jesus has healed me physically, mentally, and emotionally over the past 10 years. This one isn’t about proving i can do it. This one is about enjoying the growth process and celebrating the outcomes. This race for me is about proclaiming victory. We can do hard things when Jesus Christ is our strength.

Lord Jesus, please be with me extra close tonight as I pretend to sleep and tomorrow as I pound the pavement for 6 or 7 hours. May you get all the glory for this one. I couldn’t do it without you.

And also thanks to my cousin Zack, who agreed to be my guide runner without hesitation! He enthusiastically agreed and I’m looking forward to our extended time together. This is such a unique opportunity to share. It’s truly a gift, and I’m excited.

Now it’s off to bed folks! Wish me luck!

Marathon prep

Lotsa stuff!

I’m getting ready! Working through my list. This isn’t all of it, but it’s a good portion. I still need to fill my hydration backpack and have hubby drive me to the store to get some protein bars.

Physically I’m feeling ready but a little worried that I haven’t done any walking or running in the last few days. I did walk to the bus stop Tuesday, and I count some of my housework as cross training , so I haven’t been a total slug. I’m packing myself and getting lots of rest too. Eating all the foods. Eggs, bread, fruit smoothies, sweet potatoes, stuff like that. Carb loading is probably my favorite part of this!

I do believe I’m ready to kick some ass ay this race. Not in the sense that I’ll be fast, I’ll still be a back of the pack runner, but I don’t compete with others. I compete internally and I’m confident I’m ready to beat my first marathon time of 6 hours 59 minutes.

Tomorrow we’ll go pick up race packets and then I’ll get another picture for you with the complete set up. Now let’s do this!

The junk mail monster is messing with me

Recently I started receiving regular spam email messages – not to my spam inbox, but my regular inbox – alerting me of jobs available in the area. I ignored them for awhile, then recently tried to unsubscribe so we’ll see if that worked. But LinkedIn has since jumped on the bandwagon. I suspect it was because I *finally* logged in and removed my status and long expired credentials. Because I’ve been permanently disabled and out of the job market for 10 years. Seems it was overdue.

But LinkedIn did NOT get the hint. So they are sending me job notices as well, and today they sent me a really juicy one. Payroll specialist for a local company I’ve heard is great to work for. This is a job I would be drooling over if I was even remotely capable of doing it. It still breaks my heart to not be able to work. I loved accounting and I loved working. I still miss it and probably always will. It is my visual impairment mostly that makes it impossible to do the job I used to do. So unless they find a cure to fix my eyes I’m out of the accounting game. And most other things that require seeing. Big Fat Sigh.

Don’t get me wrong. I am happy. Content and perfectly accepting of my life now. I just sometimes miss the old days, or at least parts of it. It’s fine. I’m fine. Everything’s fine! 🙂

Restaurant leftovers

My visual impairment is unnoticeable to others, usually. And then there are times you are trying to box up your own leftovers and it becomes comically evident that something isn’t right. I was out for breakfast with a friend and had ordered a delicious breakfast burrito. I was only able to eat two-thirds of it because it was enormous. So naturally, I asked the server for a box to take my leftovers home. No problem, he said. Then he quickly came back and set a foil box on the table. Gone are the days where they box up your leftovers for you, which I am a-okay with. However, I struggle a bit with doing it myself. I shoveled my leftover burrito into the box and then felt around, searching for the lid. I asked my friend, where’s the lid? With an amused smile, no doubt holding back a hearty chuckle, she said, “It’s inside the foil. You put your burrito on it. May I?” She says this as she’s motioning toward the box to offer to fix it for me. The lid was a transparent plastic that sat inside the foil box, and I had just placed my food on top of it, believing I was setting it directly on the foil. Thankfully the lid was upside down, so all she had to do was flip it over with the burrito into the foil dish and all was well.

After that slight debacle, the server came back and patiently waited the 38 minutes it took me to read the receipt and pay using the handheld computer thing. Because I am now a slow reader. It takes time for me to locate and properly identify letters and numbers, especially on a white screen. I want to be sure I get it right, especially when I’m authorizing someone to remove money from my bank account.

My visual impairment is both a loss of field of vision and an atypical color blindness, so I can’t really decipher things unless they are bright and highly contrasting colors. I read an article earlier this week that the color blindness is actually a common symptom that comes along with optic neuritis, which is what I have. Optic neuritis is very common with M.S., but it usually resolves after a short time period. In my case, it never did. It showed up in September of 2013 and took up permanent residence in my life. An unwelcome guest that I continually work to make peace with. Being so visually impaired really tries my patience most days, but this morning I was able to laugh at myself. It’s exhausting and utterly ridiculous and sometimes laughing at myself is all I can do. It happens a lot, to be honest. So I’m going to try to remember and share more of the stories here when they happen and hopefully, we can laugh together.

Week #8 Marathon training 2.0

My second run of the week almost didn’t happen. I had a lot going on this week, I guess. However, thanks to my new gym membership, I was able to get it done after dinner! The display on their machines is nice and bright and easy to read, but it shuts off after 65 minutes so that’s all I ran that day.

I love running by this house. They have a water bowl set out in the front yard and the sign above it reads, “Water for your dog! Or short people with low standards. We don’t judge.”

I really was having fun on this Saturday long run. I was so excited to see that the bridge wasn’t flooded, even though it had been raining that morning. It looks like they put new pavement in to raise the trail up a bit, and that’s likely why it stayed dry. It allowed me to continue on the trail, which made me pretty happy. It’s a really nice trail. Lots of wild flowers blooming, and I heard a lot of birds chirping. Didn’t see any bunnies though.

Since I had to delay starting my run due to the rain, the temperature caught up with me. It was up around 80 degrees even before I was halfway done, and I was slowing down considerably. I was finishing up my 11th mile and was on a long stretch of trail that had zero shade. I had been keeping up on my run/walk intervals but it was on this trail that I could no longer run. On one of my 60 second walk breaks I quickly realized I was in no shape to start running again. I knew my body would not be able to carry me another 6 miles. I called my husband and he came to pick me up.

I tried to tell myself this was not a failure, nor me giving up. This was me making a wise decision to protect my health and wellbeing. I still have lots of training left to do, and I’m still getting stronger. But I still worry some, because I really want to do well at this marathon. Whatever well means for me, anyway. Better than the first one, I guess.

I’m still worried about injuries. My knee, my ankle, my big toe. All of these problem areas are doing mostly okay, as long as I run with protection. I wrap the ankle and the knee, and I buddy tape the big toe. It all seems to be preventing injury but I’m planning on talking to my doctor this week to be sure.

So Saturday’s run turned out to only be 11 miles, not 17. I tried to get the remaining 6 miles in today, but it was again too hot and I have been dealing with stomach issues so I only got in an extra 2. Total mileage for the week was 22.78 which still isn’t too shabby, right? Half marathon training miles of 193 plus 139.25 marathon training miles brings me to a total of 332.25 miles. There are 77 days to the marathon and many more miles to train! Let’s goooo!

Projects!

Lest you think all I do and think about is running, here I will attempt to talk about something else. I do other things. I fold laundry, cook food occasionally, feed the dogs. Oh, and I read, I crochet, and I write. And nap a lot of the days. That’s all wildly monotonous, but sometimes exciting things creep in. This week the exciting news around here is that I am refinishing my secretary hutch. And when I say I am refinishing, I mean I chose the paint color and drawer handles, and then mostly sat back and watched while my friend did most of the work. She loves this stuff, and she’s a whiz at it. I did help with putting on the first coat of paint, since it would be covered up anyway with a second coat and wouldn’t matter if I messed it up. I have never been great at painting, even before I lost my vision. Now with a limited visual field and atypical color blindness, it’s akin to handing a six year old a paint brush and saying, “just do the best you can!”

Below is an early progress photo. We had started to paint the main unit and saw that it was coming apart in the middle. Which was fine, because it is actually two separate pieces held together by wooden dowels. So taking the top section off turned out to make it much easier to finish the painting.

I’m so excited to see the finished product and get it all loaded up and organized with my office items, but it will be a couple weeks before you’ll see that, since I’ll have to wait until the paint has fully dried and cured before I can put things on and in it. It’s going to be so worth the wait. I’ll be sure to post the before and after photos for y’all so you can see the transformation. It’s going to be magical, for real.

The other project I’m working on (again) is my memoir. This is still something I strongly feel a desire to finish, and I’m making some great baby steps towards that goal. Much of the process (perhaps all of it) is expected to be tedious so I’m not sweating the details and I’m taking my time. One of the things I’ve been struggling with is how to organize all my drafts and notes. A lot of the strategies I would have used in the past won’t work now, because I can’t read normal print, I can’t read on white paper, and I can’t see typical colors or highlighting. So I have had to come up with new strategies that work with my visual impairments, and that’s been frustrating. However, this week I was reminded of an app I use, Evernote, that allows me to move my notes into folders, and I can view it in high contrast and I have all the searching and sorting functionality I could want. So that’s been exciting for me. I’m taking some inspiration from the show “Hoarders”, when they take all the clutter out of the house and move everything to sorting tables before they decide what to put back in the house and where. So I’m moving and sorting my notes into “sorting tables” and feeling positive about the progress. With any luck, by the time I get my hutch back I’ll be ready to do some serious writing!

That’s all for now. I hope you all are having a great week! *Shalom*

Week 4 Marathon Training

Week 4 did not go as planned. Thankfully, I’m stil early in my training and can make adjustments as they are needed. Tuesday’s short run turned out to be a long walk, because I was having some abdominal cramping. Thursday’s run was relocated to the treadmill due to the high AQI (Air Quality Index) in our area. Canada is still battling wildfires and the smoke has been so far reaching it’s affected much of Michigan. So I stayed indoors to be safe, but when I got on the treadmill I was having a really hard time getting my legs going, so I ended up walking the bulk of the time just like Tuesday. These long walks didn’t exactly set me up well for Saturday’s planned 13 mile run.

I watched the AQI closely all day Friday, and I was reluctantly prepared to run 13 miles on the treadmill. However, when I woke up Saturday morning, the AQI had fallen to a safe level so I happily filled my hydration vest and headed out the door!

It took me about 3 or 4 miles to really wrap my head and heart around this run. My legs were feeling clunky and sluggish, but I persisted. I think it was at the end of my 4th mile when I really felt like I was moving smoothly and I was actually enjoying myself. I was especially happy that the trail as it goes under the highway was not flooded, which gained me access to the bridge (pictured below) and of course more scenic trail to run.

I reached my turnaround point at 6.5 miles and paused for a selfie (below). Can you see I’m still smiling? I had shared smiles with a lot of passing bikers and dog walkers by this point and was feeling pretty great.

A little farther down the trail after my halfway point I was still feeling good! I was not worried about my time, and I made a point to stop and get these pictures of the beautiful spots along the way. In the past I’ve been so driven with my training runs I was not stopping much to enjoy the scenery. I’m glad I did this day because I have them as a reminder that the long run was *mostly* good.

But then, after I hit 9ish miles I started to slow down. I noticed a sharp pain forming on the inside of my left knee. Being cautious, I walked for awhile, hoping it would calm down. It did not calm down. As I walked I weighed my options. I could walk the 3 miles home, taking shortcuts where I could, or I could call and have my husband pick me up. By 10 miles I decided I didn’t want to risk permanent injury, and I called my husband. I hate doing this. My pride hurt almost worse than my knee did.

When this sort of thing happens I panic a bit. I am 45 years old with M.S. I have only been running for 8 years. What am I thinking? Am I pushing my body past what it is capable of doing? Am I going to break myself beyond repair and have to drop out of the marathon, or worse, never be able to run again? I don’t have good answers to these questions, but I am not quitting. Not even close. I am stubborn as hell, and I will continue working towards my goal until I am forced to stop. So I’m taking this week not as a failure, but as a learning lesson. What can I do different in my training? What can I change up in my strategy that allows me to build endurance more safely? My brother suggested breaking up my long runs into two shorter runs on the same day, and I may try that on the next one. I’m researching all things “marathon training” and am eager to learn more. (If you have knowledge and suggestions, I’m all ears!)

What I wanted to share was a thought I had after passing that 4 mile mark. It’s hard to describe without sounding corny, but miles 5 through 9 felt like bliss. I felt so free and comfortable in my body, which is no small miracle. Ever since losing my hearing and vision, I have had to accept the general unease I feel on a constant basis. Not hearing well, not seeing well, this is a difficult state to be living in. It causes me a great deal of anxiety and frustration and I still struggle with that daily. So to feel so *comfortable* out on the trails, after having run that many miles, was amazing. I felt as if I was exactly where I belonged. And to think that I hated running prior to 2016, and I really only started as a “what if I could?” experiment. Running has been such a gift and miracle in my life and I hope to keep at it as long as my legs keep allowing me to.

So to recap, I ran (and/or walked) 16.49 miles this week for a grand total (including my half marathon training and race) of 251.95 miles. Week 4 is complete and I have 15 weeks to go! Stay tuned folks, and we’ll be back next week for another update from Marathon Mel 🙂

Grieving has no expiration

Yesterday was a weird day. We had attended our nephew’s wedding the night before, and thoroughly exhausted, I slept in until 10 am. Not to mention, my monthly infusion is coming up on Thursday, so I’m already battling fatigue. Yet, I had a growing urge to purge some things that by early afternoon I was unable to ignore. My bedroom doubles as my office, until the kids are grown and move out. In the corner I have this old secretary hutch that I use as a desk. Until yesterday, the shelves were filled with my favorite books. I haven’t been able to read normal books since I lost my vision in 2013. Ten years ago. At that time, I went through a major purge of our old house and got rid of most of my books. The survivors have been staring at me night and day from this hutch’s shelves. Yesterday I was feeling an overwhelming urge to finally say goodbye.

This turned out to be a lot more difficult than I expected. Grieving has no expiration date.

As I dusted off each book I flipped through the pages, remembering the stories, but it was more than that. These were not literary classics. John Grisham, Sir Arthur Conan Doyle, Gilda Radner. An eclectic mix, for sure. It wasn’t the stories that I was grieving. It was the life I had pre-disability. Which is not to say I’m ungrateful for my life now. My disabilities have brought surprising blessings, and I am grateful for all of it. But you can feel more than one feeling at a time, it turns out. You can be grateful but also sad.

So that’s what yesterday was. It was a day to feel sad. I finished packing up my books and I repurposed the hutch’s shelving. I cleaned up the mess I had created and once I had everything put in order I laid down on my bed and let myself cry. That sadness had been building all afternoon and I just had to let it out. Sometimes you have to give yourself permission to feel those ugly unpleasant feelings. Process, move them through, then move on.

And I did. When I had finished crying I got up, took a deep breath, and started making dinner for my family. So now it’s tomorrow and I’m so happy with my updated office area. It looks fantastic, and it’s a nice clean space now for me to work and write. I look forward to using it every day. My vision loss is permanent, and I don’t believe I’ll ever be 100% done with grieving the loss of it, but I’m thankful that these moments come less and less often, and that I can still wake up and find joy in what I do have. Peace, my friends. Shalom.

2023 Bayshore Half Marathon

So. I ran another half marathon. This is the one I was training with a friend for, only she was not able to run the race due to a foot injury. However, she was sending me cheers from home throughout the race and was surely with me in spirit! Also, the race went as well as could be expected. Would you like to hear all about it? Grab a tasty beverage and sit back.

This particular race, Bayshore, has been kind of a dream of mine ever since I heard of its existence. The race offers 3 distances, the 10k (which I ran last year), the half marathon, and the full marathon. The races are located in Traverse City, Michigan, where my dad’s family essentially called home for many years. The small city is located in northern Michigan and is home to the Old Mission Peninsula, which is flanked by the Grand Traverse Bay. My grandfather owned property on the peninsula, on the West Bay, and my cousins and I spent a week every summer there. We have so many great childhood memories from our time “up north”. We ate cherries, we hiked, we swam, we strolled along the shore searching for Petoskey stones. My husband and I honeymooned at the cottage, sharing my childhood memories and making new ones. We’ve had family reunions there. My paternal grandparents are both now buried on the peninsula. The property my grandfather owned was eventually sold and the cottage is now gone, but a big piece of my heart still lives on Old Mission. So when I learned there was a race that actually allows you to run all over the peninsula? Sign me up! I ran the 10k last year, which was satisfying but slightly disappointing because only a small portion of the race I felt like I was ON the peninsula. The half marathon distance starts at the north end of the peninsula and follows the coastline of the east bay all the way south into town. This was the race for me.

Now I want you to understand that racing for me is terrifying at moments. Not being able to see the start from far away, being unfamiliar with the terrain. It’s not like home where I’ve memorized the potholes and cracks in the roads and sidewalks. My anxiety for this race began building several days before the race. But standing in the chute among all the other runners was somewhat calming. I was finally here. And I had trained for this, I was ready to go. Until I realized I was standing near the wrong pace group, among runners way faster than me. Not to worry, I simply shuffled back until I found my people. As I stood there waiting I checked my phone and realized I had lost my Bluetooth connection to my cochlear implants. It’s a good thing because reconnecting involves taking off my hat in order to remove my left cochlear implant, remove the battery, replace the battery to make it “discoverable”, put it back on my ear, put the hat back on, etc. So I’m glad I had that time to make sure I was connected. I rely on my music playlist to keep me going throughout these long runs.

Once I was situated and connected I got back to bouncing around to keep my legs warm and as I’m bouncing I realize there’s a strange stillness all around me. It occurs to me that everyone is looking in the same direction, some with hands on their hearts. Ah! It must be the National Anthem playing. I hope I didn’t do anything disruptive or disrespectful. It wouldn’t be the first time. No worries, carry on Mel.

I wish I could remember more of the details of this race, but I’ll share with you what I do remember. Coming up the first hill, I marveled at the vineyards stretched out on each side of me, and the East Grand Traverse Bay glistening in the morning sun ahead. The road leading me forward, filled with runners. I don’t want to forget that moment. Or later, coming around a curve to an open expanse, my view filled with brilliant blue water on my left and lush green evergreens on my right. I thought about taking a picture there because it was so freaking gorgeous but it wouldn’t have done it any justice, and it would have taken away from my enjoyment of it. I would have wasted the moment fiddling with my phone, most likely unsuccessful anyway.

I continued running, soaking in the atmosphere and the majestic scenery. All the anxiety had disappeared. I was thanking God for this experience. It was incredible. I felt strong. I was at peace. It wasn’t until I was about 6 miles into the race, that I started to really feel the burn and the soreness of my legs. I still felt strong, and my legs were moving well. That’s also about the time I started to see more and more spectators. Kids giving high fives, dogs wondering why all these people are running in the street. Posters lovingly prepared: DIG DEEP – a POWER button – WORST PARADE EVER. I love these races. You think making a poster and standing at the side of the road isn’t a big deal, but it IS. Without the spectators, it’s just a grueling training run. We NEED these people.

Around the 8th mile I was starting to really struggle because the weather had warmed up quite a bit. I decided to take my shirt off during my next walk break but with the deaf/blind vest and the sweat sticking to my shirt, it took longer than I anticipated. So by the time I got reset I was running through an aid station with a gang of onlookers to my comically awkward process. It didn’t matter. There’s no shame among runners, and these people understand and have likely seen it all. In fact, later in the race I was passed by a woman carrying her shoes, running in her socks to the next aid station. You do what you have to do. So it was a bit of a chore to get that shirt off but it was so worth it to lower my temperature a few degrees. It gave me the rejuvenation I needed to keep going.

The last few miles of the race honestly felt like drudgery and I just wanted to be done but those spectators kept me going! The runners were still moving ahead of me and I just kept reminding myself what I came for, and that was to complete this race. And I did! I finished! I set a new personal record for myself, and I did not fall. Though after the finish I was struggling to walk. My left foot knew we had crossed the finish line and just refused to lift, so I hobbled along the fence line until I saw my husband and kids walking up, all smiles. They escorted me to the recovery area and found me a chair and some ice cream. It was an incredible moment, getting to share this accomplishment with my three favorite people in the world. I tear up just reliving it.

Me, in my bright orange vest, running towards the finish line!

This was such a great race. It was so difficult, but I have to accept that reality because I’m signed up to run my 2nd full marathon in October. Yes, yes I did. I swore I wouldn’t run another one but it turns out I lied. I’m glad I already committed to the marathon, because I think I would have chickened out after this race. It was a sobering reminder of how difficult and painful it is to run a lot of miles, but it was also a good reminder of the immense joy I still find in running.

It’s serendipitous that my devotional this morning actually talked about how we can have joy and pain coinciding. We can feel both simultaneously, and that’s an incredibly mysterious fact of life. There will be pain. Expect it. But also we have in us what it takes to keep moving forward and find joy in the midst of it. I am so grateful that God has sustained me as I continue to run. That He has given me the inner strength to keep challenging myself and doing these ridiculous races that both terrify and thrill me.

Isaiah 40:29-31 ESV “He gives power to the faint, and to him who has no might he increases strength. Even youths shall faint and be weary, and young men shall fall exhausted; but they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint.”