I don’t know if anyone has noticed, but I haven’t really been blogging much lately. Lots of reasons for that, most I’ll keep to myself. But today I was jotting down some thoughts I had while folding laundry. I sometimes think my best writing comes like this, before I ever sit down to write. Since these were thoughts regarding my experience living with multiple sclerosis, I thought it would be appropriate to share here.
My expectations of myself are still, even after almost 16 hours, of someone I used to be. I expect to be able to complete activities with the same energy and stamina of someone who does not have MS. I am still hung up, and low key furious, if I’m being honest, about not being able to do “all the things.” And then I have a bad fatigue week, like last week, and I’m slamming drawers and throwing dishes because I’m angry that I can’t move my legs like a normal person. Like my former person. I *want* to do all the things. I desire to complete tasks so I make lists, I plan. But then, I collapse because just the planning of all the things has exhausted me. Dammit. And then I am overwhelmed by the enormity of it all. It’s so big, in comparison to my capabilities. But then I remind myself that the only way to eat an elephant is one bite at a time. And I ask for help. I pray to the Lord for guidance, for rest, for strength. I ask Him to give me some grace and patience for the moments. Wash, rinse, repeat.
It’s fine. I’m fine. Everything is fine. I remind myself that everything I do, all day every day, takes significantly more effort than it used to. Mostly this is because of my vision loss, which if I had to rate, is my very least favorite disabling feature. It is so difficult to see and I’m trying so effing hard. The striving is utterly exhausting. I’m done with it. Done, I tell you! Done!
It’s bedtime, folks, and I almost forgot to post! My head is all squirrely today. Trying to set up new phone and learn necessary features is such fun. I mean, not really. It’s exhausting, but I’m getting there. I had some trouble last night getting it properly connected to my cochlear implants via Bluetooth, but I handed it over to my daughter and she was able to get it working. Teenagers, you gotta love ’em!
Today was a fun day filled with great conversation with beautiful people. First, at BSF (Bible Study Fellowship) and then later with two of my besties. Three days in a row spending time with awesome women. I am feeling super blessed this week.
Tomorrow and Friday the plan is to wind down and regroup. I have an early morning online meeting with someone from the kids’ school – nothing major, just some routine business to take care of. Hopefully it will be quick and painless lol I had thought about going to the gym afterwards but I decided to postpone that for Friday or Saturday because not being home much for three days in a row leaves me wondering what is needing my attention. The kitchen, fridge, our personal finances. All of it needs some TLC so that’s what I’m looking at. I’m sure you’ll enjoy reading all about that after the fact, right?
I’m enjoying these quick daily updates. One thing I should mention before I go – just to keep it M.S. related for all those who may be curious – setting up this new phone, finding all the features, reading the screen, etc. is utterly exhausting on my eyes. It’s legit work, for real. I find I need to take super frequent breaks to rest my eyes. When they start acting all stabby and bouncing around, I know I’ve overdone it. It’s slow work, and I’m really trying hard to stay thankful that I still have some vision and it’s remained stable all these years.
And that is all, I’ll let you go now. Sleep well, my friends!
Some days we get to feel like we are winning. Not that there’s any type of contest, or reward for this “winning”. I mean the kind of day where you know you’ll be going to bed pleased that you were able to accomplish what you set out to do.
Today sort of feels like that, and I’m rereading that statement above and cringing at how pretentious it sounds. All I’m really trying to say is I’m proud of myself. And I don’t always feel that way, so it feels worth mentioning. Today I went to the gym and tried the 30 minute circuit that I had been wanting to try but had been too self-conscious to do. I was just nervous that i wouldn’t be able to see the numbers or instructions and that people would see me fumbling around or staring so long at the signs and would laugh at me. But I did it anyway! And it seems I started a trend because when I entered the room, I was alone. By the time I finished the circuit, several more people had joined in. When you finally do something that you had been avoiding for so long for fear of being laughed at, it’s a pretty incredible feeling of accomplishment. To be bold and confident when you don’t normally perceive yourself that way? Definitely feels like winning. The feeling is the reward.
Also, and this will hopefully be addressed in a later post, I traveled with my white cane today and I have to make an observation. The city bus drivers are a lot more patient with you when they know you have a disability. I found that when I have the white cane out in sight, they actually wait for me to be seated before they start moving again. I definitely appreciate that. I have so much more to say about this topic but the story is still working itself out, so it will be awhile before I can fully report on it. Stay tuned for that!
These weekly posts are getting to be less about the training and more about how life attempts to interfere. Ah, well. Life happens. You adjust and move on!
So this week I completed one task on my training plan, and that was a 12 mile run. I had originally scheduled this long run for the previous Saturday, but I opted instead to watch my son play tennis. So I had looked at the weather for the week and Tuesday looked like a good enough alternate. And then Allison, my guide runner, texted wanting to see if she could join me for a run. We had talked about doing another long run together, but with her schedule thus far we weren’t able to make a weekend work. Luckily she was free on Tuesday, so we made it happen!
I love showing off these trails. Allison hadn’t run them before (at least I don’t think so), so it was fun to show them off to her. I’m very proud of “my” trails 😉 We had great weather. I could have done with a few degrees cooler, but I’m not complaining because it beats running in the rain. Most of the miles were uneventful, but I could tell during the last couple that my left leg was dragging. I made sure to let her know so she would stay close enough for me to grab her arm if needed. I did trip once or twice but I did not fall (just call me Weeble).
Since the Tuesday long run got me off schedule (and I spent a second Saturday watching my son play tennis) I don’t know when I’ll do my final long run. The race is only 12 days away, so maybe it’s too late to be doing long runs, and I should just lean into the taper? When you are trying to fit training into your schedule *and* work around Michigan’s unpredictable weather, it gets tricky. So I think this week I’ll do some shorter runs to keep up the mileage and extra step-ups and stair climbs to keep those hill climbing muscles ready.
I have to say I’m a little concerned about my readiness for this race. I keep hearing about the gnarly hills/dunes, and I’ve been increasingly slacking on both my short runs and my strength training. Hopefully my early commitment to the training left me with some strength I can draw from during the race. I don’t have a time goal, so I really am just hoping to enjoy myself and the incredible views. I heard that Good Morning America voted Sleeping Bear Dunes the Most Beautiful Place in America. That’s high praise. I mean, what about the Grand Canyon? The entire state of Alaska? Hawaii? But no, our little ole Sleeping Bear Dunes ranked #1. And I’m gonna have the privilege of running through it. I can’t wait!
A few months ago I signed up for a new-to-me 10k. The entire race event is set up to raise funds and awareness for pulmonary hypertension (PH) and multiple sclerosis (MS), and it offered multiple distance options. The name of the 10k distance was “Melinda’s 10k”, which is my full name so you know I just HAD to sign up. I did not look at the course map, and I had no friends who were running it but I wasn’t worried about it. I would wear my DeafBlind vest and be extra careful, and it would be fine. I signed up, and then forgot all about it.
A month ago I received a message from United in Stride, which is an online database that helps pair blind runners with guides. The company was founded in 2015, so it hasn’t been around for long, but I do believe it’s growing. I signed up with them several years ago, when I realized I was getting serious about running, but at that time there weren’t any guide runners in my area so I just forgot about it. Then comes this message from Allison, who wants to know if I need a guide runner for any upcoming races. At first I told her no, because I had forgotten about Melinda’s 10k, but then immediately came back and said yes, actually I do have a race I need a guide for. She was immediately on board! Not only that, she was eager to run a couple training runs with me, which was a great way for us to get to know each other ahead of the race, and for us to practice running side by side.
Me & Allison before the race. Lots of sun! All smiles.
We ran this race together, and it was a good thing I had her with me. For several reasons, much of the course we were the only ones in sight (or at least in my sight): it was a small-town race, not a lot of 10k participants, not a lot of spectators, and I’m pretty slow so I hang at the back of the “pack”. There were several spots in the course where I could have easily made a wrong turn and gotten lost. I was super grateful to have her with me. I had been hoping to beat my previous 10k PR (personal record) from 2020, but that wasn’t meant to be. Not only was it really warm this day, but my fatigue this past month was pretty gnarly and prevented me from doing the amount of training I needed. I was happy to finish though, and I wasn’t too far off my goal, so I’ve got something to work towards for the next one.
Me & Allison after the race, holding up our medals. Still smiling!
The best part about this for me, what I’m really excited about, is that it opens up more options for racing. Up until now I’ve only ever entertained the idea of running races local to me, where I could easily get a ride from my family or friends, and not have to worry about inconveniencing them. The couple I have done outside of our area, my family and friends graciously took me to because they knew they were important to me, but I’ve run out of those bucket list type races. Now I just want to keep racing for the fun of it. It’s hard to ask someone to bring you to an out-of-town race when there’s nothing in it for them but standing around waiting for you to drag your sweaty ass over the finish line (thank you a million times over to my dear husband who does this without complaint, and is always more than willing to hug me and hold me up at the end, despite my level of stink).
So. All that to say, I am stoked to have yet another running buddy. Allison and I have been talking about what other races we could run together, and I love her enthusiasm. I’m old enough to be her mom, which took some getting used to at first, but I think her energy helps to motivate me so it’s a great thing. She made us matching bracelets that say “Unstoppable”, and I’m looking forward to wearing mine at all our future races.
The finisher’s medal and the bead bracelet Allison made for me.
As I was writing this it occurred to me that I don’t think I ever posted about my race from last month, so I’ll get that one started for you too. It will be another great opportunity to talk about my invaluable guide runners. I couldn’t do this crazy stuff without them!
I know it’s been a while since I posted. I’m still writing almost every day, because it’s what I must do for my general sanity, but I haven’t felt a strong need for blogging. Well, that’s not true. This whole blog is pretty much my personal stream of consciousness, and I haven’t wanted to bore you with my thoughts lately. But I’m going to try to get back to it. I’m trying to work some consistency into my life with writing and exercising, so adding blogging into that isn’t a huge stretch. (That’s a lie, I started this post 5 days ago.)
Consistency is a challenge when you are having to work around bouts of fatigue. I never know when it will come and how long it will last. And to be even more honest, it really bothers me that after nearly 15 years with M.S., I still struggle this hard with fatigue. Thankfully it doesn’t send me into a tailspin of depression the way it used to. My brain is getting better at managing, I suppose. Thank you to my therapist for that. And for the Holy Spirit, who whispers wisdom when I make a point to stop and listen.
I’m still running. Still writing. Still deaf, and still mostly blind. I have days when I feel okay with my physical limitations. Days when I’m just putzing around the house, so it doesn’t interfere too much. And then days like last Wednesday, when I was out grocery shopping with a friend. It’s exhausting and psychologically taxing. For someone who lived most of her life as a people pleaser with strong codependent tendencies, it’s a tough switch to not care about bothering the people around me. This is the attitude I must take whenever I am out in public if I have any hope of not collapsing into a puddle of tears. Metaphorically speaking, of course. What I am trying to say is that in order to make it through a store, even a store as small and streamlined as Aldi, I need to put on my blinders and not worry that I might be in other shoppers’ way. There is no sign on my back that warns – “Slow shopper, please excuse” – in order to solve the mystery of why I’m staring for so long at a wall of bread. (They all look so similar and I have to carefully read the labels on the shelves.)
I’m not sharing all that to garner pity or validation (well, maybe just a little). I think I’m mostly sharing it because I want you to remember this the next time you are at the grocery store, or in line at a fast food restaurant, and the person in front of you is taking an excessive amount of time (from your perspective). Maybe there is someone on a motorized scooter parked right in front of the chips you came for, and you have to wait an extra minute or two. Does it irritate you? Does it make you mad? Remember, they are probably just as frustrated having to use the stupid scooter. So please, have some patience please. Your kindness goes a long way.
********** So that post went an entirely different direction than I expected. I came back to it today and groaned. This is the life of a writer. Not every day can be a great writing day, but you keep doing it anyway. The catch with blogging is other people are reading your crap writing and may be (gasp!) *judging* you. So I figured I have two options: obsess over every sentence to tweak and make it better, or delete it altogether. I’m going with a third option. Hit publish and move on with my day. I’ll be back with more updates, I’m sure. See you later, folks. Have a beautiful day.
I recently read a book for book club called Learning to Walk in the Dark by Barbara Brown Taylor. Ever since, I’ve been thinking a lot about the dark, and my relationship to it. When I lost my vision and hearing I became very afraid of the dark. My limited field of vision leaves me wanting more. If I could just get more light in, maybe I could see the whole picture. With more light, maybe I could see it all. But that’s futile wanting. Even with full light, I still can only see fractions. I’ve had extra lighting installed everywhere in my home. Extra lamps in the bedroom, recessed lighting in the living room, under the cabinets in the kitchen. It does help when I’m trying to get work done and need to see specific things. Paperwork, food I’m preparing, the dust on the couch. But it doesn’t fix it. I’m still partially blind.
How long to you feed the longing for something you lost? How long do you entertain the yearning when you know it’s not coming back? Is the frustration worth it? Probably not. When is it time to give up the striving? Probably now.
I’m learning to sit in the dark. I woke this morning to get the kids up for school. I know they are teenagers and should be able to do this for themselves, but I enjoy it. I enjoy being around them in the calm of the morning. I know I’ll miss it when they are gone. This morning when I came downstairs to let the dogs out, I intentionally did not turn on the light in the kitchen. We have under-cabinet lighting, so it wasn’t completely dark. But it wasn’t completely light, either. It was nice. Calm. When I let the dogs outside, out of habit I flicked the outdoor light on and our deck flooded with artificial light. It was harsh, and as I looked out into the yard I noticed the moon hanging low in the sky. It was a near full moon, and it was majestic. So majestic, that I decided I needed to turn off the floodlight and let the moon shine in all its glory. I stood on the deck as the dogs ran around the yard and just absorbed the blend of early morning light and dark.
Normally I would have been trying to conjure up some profound thoughts in response to this moment, but today I just wanted to be. I just wanted to breathe in the morning, thank God for giving me the moon, and let that be enough. Over ten years into this disability, I am still grieving my losses. I don’t think grief is a checklist to be completed. It ebbs and flows, and it never truly ends. But I am thankful that it has waned, and is not so soul-crushing as it used to be. I am learning. Learning to sit with the dark, look up to the sky for solace, and be okay. Because today, that is enough.
Today I used up too many spoons folding laundry and fixing lunch, so I had to make the decision to stop part way through and cross some things off today’s to-do list.
Spoons? What?! No, I’m not having a stroke. I’m referring to the Spoon Theory. I was trying to explain this Spoon Theory to my therapist this week, because she had never heard of it either. This article explains it much better than I can: https://www.goodrx.com/health-topic/mental-health/spoon-theory. Basically, it is a way that many people living with chronic illness conceptualize how to manage our energy levels. Each day we wake up with a set number of spoons, and as we go through our daily tasks, we use up those spoons.
I can say that for me, I never know how many spoons I’ll wake up with each day. My spoon rations (I.e. energy levels) are unpredictable and sporadic. I often have moments in the day where I feel energetic, but it hardly ever lasts very long. That happened today. I woke up feeling pretty well, considering the excessive fatigue I’ve been struggling with over the last month or so. I folded a load of laundry, started on a second load, and then noticed the time and realized I needed to eat. I went down to the kitchen and fixed myself a breakfast taco. After eating, I went back upstairs to finish with the laundry and just couldn’t. I had to sit down. Lie down, actually. Like it states in the article linked above, everyday tasks demand extreme effort. Getting dressed, brushing my hair and teeth, all cost daily “spoons”. I forget that fact and tend to overdo it. Repeatedly. I may never learn. But that’s why I’m grateful to have loving family members and friends who graciously remind me of my limitations (something like, “you have M.S., remember?”) and give me permission to rest (I know, I can give myself permission, but sometimes it helps to hear it from someone outside yourself.)
So. It’s only 2:30 pm and I’m thinking about what I have on my plate for the rest of the day, and how many spoons it will take to clear that plate. I am attending a sporting event for my son tonight and I know that’s going to require several spoons, so I’m resting in order to reserve my energy for that. Because even if I have enough spoons to get there, it’s likely I won’t have enough to pay attention to what’s happening or carry on conversations. With cochlear implants, having conversations uses up a lot more spoons than it did before I was deaf. Same with the vision. It takes a lot more effort to get around than it did before. Thankfully, my husband will be there to support me. That is always reassuring. But that act of evaluating my daily activities and how it will likely affect my energy levels is a daily thing. I think about it all. The. Time.
I’m not sharing all of this to whine, and I hope that’s clear. I just thought you might be interested in hearing a bit about what my daily life is like living with this chronic illness. As I told my neurologist earlier this week, managing M.S. is like a full-time job. Seriously. And I’ve had it “easy” for a long time now, so I suppose I was due to have some difficult days. I’ll get through this. Lord knows I’ve done it before and with His help, I’ll do it again. Slowly but surely, one day at a time.
So with that I say – take a break, reader! Go outside, listen to fun music, take a nap. And happy Friday… have a wonderful weekend.
Wow. I knew I hadn’t posted in awhile but I didn’t realize it’s been nearly two months. I’ve been okay, really. I’ve just been focusing on a lot of other things. And I’ve still been writing in some capacity all along, because I am still the ME who lives and breathes for writing. Writing seems to be one of those things that actually gives me energy. Mental energy mostly, not physically. The running helps with the physical energy. Since it is winter in Michigan, I have struggled to run consistently, because I detest the treadmill, and running outside is neither safe nor desirable. Even when I can bundle up for warmth, I still have the ice and snow to think about. I walk out my front door after a good snowfall and it’s a sea of white, covering potential icy hazards. So I’ve been trying to get to the gym for treadmill running and strength training, but it’s been a bit sporadic.
Also, all the sleeping! With shorter winter days and limited sunlight, I feel like I’m not alone in this. Needing more sleep seems to be the trend, so I’m not blaming the multiple sclerosis for this one, though I do think it’s heightened. I’m definitely needing more sleep than usual. And this year, I’m just accepting that. It’s fine, I’m fine, everything is fine.
We lost a close friend to cancer last month, and that has motivated me to stop wasting time with my memoir. Because he was too young. Life is short and we are not promised tomorrow, so we need to cherish every moment. So I’ve been chugging away at my memoir a little teensy tiny bit every day. All the books I’ve read on writing memoir compare it to training for or running a marathon, which fortunately I’ve done! So I can compare the two, and I honestly believe writing this memoir is proving to be more difficult than training for a marathon. But I also think it will be more rewarding once I’ve completed it.
Writing memoir requires a lot of introspection, self-awareness, and emotional gymnastics. I’m comfortable with this, but it does exhaust me in surprising ways. So I’m learning – again – when I need to take breaks, and giving myself permission to do that. Hi, my name is Mel and I’m a recovering over-achiever. Most nights I try to go to bed with a to-do list for the next day, and very rarely do I tackle everything on the list. The excessive sleeping has been a huge hinderance to that, for sure. Some days I’m writing stories, other days I’m organizing my ideas and brainstorming, and still other days I’m reading about writing. But if I can give the memoir even 15 minutes per day, I’m calling that a win because it’s progress. Snail’s pace progress, but still progress.
So that’s kind of a snapshot of what I’ve been up to. Sleeping, writing, and sporadic exercise. What else, folks? I guess that’s all I’ve got for now, but I wanted to pop my head up and let you know I’m still around, and I’m doing well, overall. I hope the same is true for you. Shalom, my friends. Shalom.
I stood in the aisle at Wal-mart, flooded by the harsh florescent lights above. Crafts to my left, kitchen goods to my right. I said to my sister, “Kari, I just have to say… I really hate not being able to see things.” And then the tears quickly started to fall from my eyes. She came over and wrapped an arm around me and said “I know. I mean, I don’t actually know, but I know how hard it is for you.” She held me for a minute, just knowing I needed that moment to process some of my never-ending grief. You have to let yourself move through it. It comes in waves, but thankfully doesn’t linger for long.
We had been shopping all day for Christmas gifts for our families and this was our last stop. I still had one gift to find for my husband and I was exhausted. Sure, my feet were sore, but I was more mentally exhausted than anything else. It’s tiring having to find things when you can only see a scattered portion of what’s in front of you. If you’ve ever been overwhelmed by the vast varieties of mayonnaise in a large supermarket, then you have a glimpse into my frustrations. Multiply that by 100.
I said to Kari, “it’s not like this at home. At home it’s easy; I feel like I can see everything.” And that’s not because I can physically see what’s there, but it’s because my brain knows. It knows because I live there and interact with every inch of every surface, every drawer, every cupboard. I know because I put it there. Unless someone moved it (or I did, and just forgot), I don’t have to wonder. I don’t have to move my eyes or head around to find things or to read labels. As long as the cans are where I put them last, I know where to find the soup from the beans.
At home, I don’t feel so slow. Out in the world, out shopping, I’m slow. And I am sure I look it. Strangers walking by might think, “Wow, she’s really taking her mayonnaise choice seriously.” No, I’m just trying to find the one I need out of the thousands in this Wall O’Mayo. I’m not conflicted about the decision; it just takes a long time to find and read the words on the labels when you can’t see most of the letters. In my world, patience has become a virtue I would not survive without.
My visual impairment is a permanent result of optic neuritis. Optic neuritis is a fancy term for inflammation of the optic nerves, and for me, it comes out of the grab bag of damage multiple sclerosis has left me with. It presents differently for everyone, but my particular case has left me with permanent blind spots and atypical color blindness. The blind spots are like thick, scattered clouds that impede more than half of my visual field. I’ve compared my vision to taking a completed 1000 piece puzzle and randomly removing 600 pieces. And then spilling water on it to mute the colors. The atypical color blindness means I have a difficult time distinguishing colors like blues, greens, reds, browns, etc. unless they are highly contrasting. This is why I often can’t see cracks in the sidewalk or the texturing on the white walls in my home. I lived in my current house for six years before I discovered the front facing was painted two different colors. The loss of visual field means I can’t see whole faces. I’ve hugged complete strangers thinking they were family members; I’ve stared blankly at friends I’ve known for decades. Again, patience has become a necessary virtue for me.
When I described my vision to a friend recently, she said it sounded like I was a human viewfinder. Which sounds a lot more fun than it really is, but I’ll take it for the laugh. It’s either that, or cry. I’ll take the former, always. Unless I’m at Wal-mart, I guess.
Deaf and half-blind runner with multiple sclerosis
Little M.S. Runner 