Multiple Sclerosis, Writing, Visually Impaired, Nonsense, Low vision, Stories

Real Talk

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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.

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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.

Family, Food, Multiple Sclerosis, Running, Stories, Writing

Shall we chat about food and writing?

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Well, I spoke too soon about the dysesthesia (the burning sensation) on my back. I had a day’s reprieve, but it returned today. So that was kind of disappointing, but it’s fine. It just requires some wardrobe adjustments and limiting my upper body movement until it settles down. No biggie.

With my increase in energy I was able to make more meals at home this week! One of the downsides of my fatigue is that I’m not making meals for my family. This means they are eating crap processed food from the freezer, or Ramen (my daughter’s personal favorite), or fast food. So this week it has been really nice to get back to some better meals. Wednesday I made BLTs and onion rings. Thursday I made shredded chicken for tacos in the crockpot and it was so good (and plentiful) we had it again for dinner tonight. Tomorrow I’m planning to make pulled pork for sandwiches with coleslaw, and Sunday, meatloaf and mashed potatoes. Most would probably not call any of these meals healthy, but compared to what we eat when we are in mom’s-fatigued-crisis-mode, it’s a nice change. Also, it’s mostly been food my picky family all enjoys, so that’s always satisfying.

In addition to returning to healthy habits, I’m trying to get back to writing and working on my memoir. I had been plugging along pretty steadily on that when the fatigue hit. I knew writing a memoir would be challenging, but I’m finding it challenging in ways I didn’t expect. Through the magic of the interwebs I’ve connected with a lot of other memoir writers, however, and I am learning a ton. It’s been really great to bounce ideas off other people who can relate directly to the challenges I’m facing. They offer advice that they’ve learned along the way, and hopefully I’m able to offer them helpful feedback as well. I joined a weekly writer’s group to help keep me motivated. Just being a member of the group keeps me accountable and encouraged to not give up on the process.

You might find this interesting: I’ve read in several books on how to write memoirs, that writing a memoir is akin to training for a marathon. Which is humorous to me. I’ve trained for two marathons, and writing this memoir is by far the most challenging. At least with the marathons I had cut and dried plans to follow. But while “how to write a memoir” isn’t so cut and dried and that is frustrating to me, it means there’s a lot of room for creativity and I’m learning how fun that can be. For example, this past week in my writing group I took a stab at a “quick and dirty” shortened version of what I *think* the book will end up being about. I read it to the rest of the group and it was a lot of fun! It felt silly and free, and like it had sort of gotten me “unstuck” from where I was in the process. I still have so far to go, but I at least feel like I’m headed in a (mostly) forward direction. I will include my quick and dirty short version at the end here, in case you are curious. Keep in mind, it’s not to be read for critique, it was only written as an exercise in searching for a skeleton or outline to the book, which has been one of my ginormous struggles up to this point. I have a plethora of life experiences and stories in my head as well as on the page, and needed to find a way to filter out what actually belongs in this book.

Here is what I wrote this week:

Once upon a time there was a woman. She sat at home alone, feeling helpless and hopeless. She considered swallowing a bottle of Xanax to put an end to her suffering. (They said I should start with my lowest point.)

But! A desperate cry into the interwebs resulted in a friend coming over to save her from herself. She vowed never again to give up fighting.

Why was she so hopeless? What was she fighting? Multiple sclerosis yes, but more recently deafness, permanent vision loss. How will she come back from all this? What will rehabilitation look like?

She decides to start with the basics. Cleaning, cooking, connecting with family and friends. She developed new routines, and as things were scary or feeling new to her, her friends and family helped her to adapt. She overcame fears of boiling water and cutting apples, for example. She began walking around the block with her walker, and eventually walking with her cane to take her kids to the bus stop for school. She eventually was able to give up the cane until one day, she decided to see what would happen if she jogged for a couple of sidewalk squares.

Incredibly, she did not fall!! Bolstered by her victory, she worked and worked at building up the strength in her legs, taking solo trips around the neighborhood. When news came of a local 5k race happening, she decided to sign up to run it. (And here’s where we could write more about all the races she’s run and how she had to adapt, not ever having been a runner previously, and certainly never one with physical impairments.) Five years later, we see a woman running alone in the street, leaning hard to the left, hobbling her way to a makeshift finish line. As she sobs, she breaks through the caution tape and collapses into her husband’s arms. She has just run her first marathon, 26.2 miles, in just under 7 hours. She is elated, ecstatic to have finished on her feet, but vows never to run another one.

That ending is obviously incomplete, but it was a timed exercise so that’s where I had to leave it. I’ve always struggled with endings, so I still don’t know where to go with it, but I’ll figure that out (for those who know my story, if you have suggestions, I’d love to hear them!). If you could see the mess of chapters and paragraphs I’ve collected so far, you would appreciate that writing this quick and dirty tale is a major step forward in creating a plotline for my memoir. Beginnings seem to come naturally to me when I’m writing, but I get a little lost in my head through the middle and by the end I just don’t know how to “land the plane”. So that’s something I’m accepting about myself and working on. This writing project is proving to be a great lesson in grace and patience with oneself! For real.

And that is all, folks. It’s after 9, my brain has officially shut down. No more editing. This is what you get. Have a fabulous weekend!

Cochlear implant, Coffee, Disability, Domestic Engineer, Family, Friends, Grief, Health, Housekeeping, Kids, Multiple Sclerosis

Health Update (Warning: this is a long one)

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I have great news. My fatigue levels have been going steadily down, my left leg has become way more responsive, and as of today, I am feeling zero nerve pain on my back! I can cautiously say I am back to my previous “normal”.

I first noticed the energy levels coming back a few days ago. I had been walking around the house, originally for accomplishing only necessary tasks like using the restroom and drinking coffee. But somehow along the way I realized I was *also* picking things up and putting them away, cleaning small problem areas in various rooms. It was only when my daughter said to me, “you need to sit down”, that I realized I had been doing anything extra. I thought she was telling me to sit down so I wouldn’t spill my coffee (as I often do), but she said it because she noticed I was audibly out of breath from walking up the stairs.  That was the moment it dawned on me. I had been cleaning, and that walk up the stairs to my bedroom was the last straw for my lungs, apparently.

Let me just pause the update right here and share with you the poignant realization that came to me at this time. What dawned on me was this: I am not a lazy person. I do the things that need to be done, when I am able. Even more surprising, I don’t often have to think about it; I just do it. This realization gave me such pause because one of the things I’ve been struggling with over these several weeks of constant fatigue is the feeling like I’m not measuring up because I’m not doing the things I normally do. I was feeling like an unproductive and lazy person. I don’t know why the voices in my head tell me such awful lies, but they do. So while I was happy to have some energy creeping back, I was also sad to think that all that time when I could have been resting peacefully and allowing my body to heal from this wretched attack on my nerves, instead I was beating myself up for not being more productive. I think we like to call this, “stinkin’ thinkin'”, and it’s got to stop.

So I’m putting this here for two reasons. One – so that I can come back to it when those awful thoughts inevitably come back to haunt me and two – so that you can learn from my mistakes and be kinder to yourself as well.

Now back to my health update…

When I realized all these symptoms that had crept up weren’t going away, I had reached out to my neurologist’s office. They ordered lab tests, which all came back normal. They would have liked to see current MRIs to check for active lesions on my brain and spine, but since I have cochlear implants that’s not an option for me. Some newer cochlear implants are safe for certain MRI machines, but not mine. I would have to have them surgically removed first. Not happening, that’s overkill. So, since they couldn’t get updated MRIs, we just moved forward with treating my symptoms. The nurse practitioner talked with me for over an hour in her office, discussing diet, exercise, sleep, stress levels. Through our discussion I think we landed on two possible culprits, poor sleep and high stress.

We’ve addressed my poor sleep quality with a small nightly dose of gabapentin. I have taken this in the past at a higher dose for nerve pain in my legs, but never on a consistent basis. She wanted me to take a small dose every night to let it build up in my system, knowing it would help me sleep but also may help with the nerve pain in my back (the technical term is dysesthesia, if you care to look it up.) The gabapentin did not have a noticeable effect on the dysesthesia. However, it is absolutely improving my sleep quality and I think that has been the #1 factor in the abatement of all my symptoms.

Sleep is an easier fix than the second factor. One of the first questions the neurologist’s assistant had asked me was, “Have you had an increase in stress level?”. Big Fat Sigh. You could say that. I told her we had recently lost a close friend to cancer. Our friend Dave passed away in January, after fighting an aggressive cancer for five months. Five months that felt like both an eternity and a blink of an eye. Dave had been like a brother to us for 25 years. His family is our family. He was only 47, and he’s left behind a beautiful and amazing wife and two grown children. He was my husband’s best friend. His wife Sarah, one of my best friends. His absence is still felt daily in our home.

I shared with Sarah shortly after his passing that I didn’t feel like I had the right to be so sad because he wasn’t MY husband. He wasn’t MY best friend. But she – so graciously and that’s why I love her so much – told me we all had the right to grieve. We all grieve in different ways, and that’s okay.

I didn’t intend for this post to be about anything other than my health update, but it has taken this turn and I’m going with it. What I’m acknowledging is that Dave’s illness and passing was more stressful than I realized. Prior to this I was fortunate to say I hadn’t dealt a whole lot with death. I hadn’t lost a lot of people I was very close with. My immediate family and close friends are all still living. But Dave was close, and I know this because his absence is still felt here in our home. Reminders of him are everywhere. When we were searching for old photos of him for his memorial service, my husband and I joked that we had more pictures of his kids than ours. We have so many great stories, memories of time spent with him. We will never forget him. We are sad, heartbroken, but we know he is now at peace and no longer suffering. And if he were reading this he would say let’s move on Mel, this is depressing.

Okay? Okay. Back to the health update…

So, externally, I can acknowledge that my grief changed the way I was eating, drinking, sleeping, exercising. All the normal, healthy habits I had worked to establish went out the window. And internally, I was holding in a lot of emotional pain. I still am somewhat, but I’m working through all that with prayer, journaling, therapy, connecting with friends and family. My heart is healing.

I have been getting back to my healthy habits, but the reality is that my body tends to delay in its reactions to stress. I am generally a slow processor – “don’t rush me!” – and this translates neurologically as well. In fact, when I had the BIG relapse in 2013 that left me deaf and half blind, it all started one week after I completed my last college class to complete my bachelor’s degree. I had been under a lot of stress, and my body held that in until after it was over. So I think that’s kind of what has been happening now. I was holding in a lot of that stress and grief and when I started to let go of it, my body reacted. Stress and M.S. are a really bad combo. I need to remember that moving forward and be more mindful of my stress levels. Know better, do better. Be kind to yourself, and rest when you need it. That lesson is for both me and you. Do you hear me? It’s for all of us. Shalom, my friends. Shalom.

Books, Disability, Faith, Family, God speaks, Kids, Low vision, Multiple Sclerosis, Stories, Visually Impaired

Learning to sit in the dark

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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.

Faith, Family, Food, Friends, Hearing Loss, Low vision, Multiple Sclerosis, Visually Impaired

Thinking about the spoon theory

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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.

Multiple Sclerosis

This is a “Full Disclosure” post

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I want to be clear here: I am not posting this to gather pity. I am posting this to inform you, my readers, that my life with M.S. is not all sunshine and roses, and I do have difficult days. I ask that as you read this, that you keep in mind those you may know who also suffer from M.S. or any other debilitating illness, whether it be physical or mental or a mixture of both. I tend to post a lot of the positive spins on my disability, the overcoming moments, the victories big and small. Today I have no victories to share. Today I’m just sharing the real. If that’s cool with you, read on.

I’ve been experiencing extreme fatigue on and off (mostly on) for several weeks now. I tend to expect this every month before my infusions, but this time it came on sooner than expected and continues to persist beyond my infusion this past Tuesday. It crept up on me, and I wasn’t really realizing the severity until I noticed my left leg was seriously dragging. When I try to move that leg it hesitates like a 4 year old who was just told it’s time for bed. I pulled my walking cane out of storage for safety. I hate using it, but I need it in large spaces where I don’t have a wall or a handrail to steady me when I lose my balance. Losing my balance happens often throughout the day, and it’s quite unpredictable. I have to move slow. If I turn too quickly, I quickly lose my balance. Picture a human Weeble, if you will (“They wobble, but they don’t fall down!”). That’s me. I haven’t fallen so far, cross your fingers!

The other thing that’s been going on since around Monday is that I have a nearly constant burning sensation on my back, just below the right shoulder. This is extremely similar to the sensation I had on my arm in the months leading up to my M.S. diagnosis in 2009. It feels like a sunburn, and is painful to the touch, which really limits my clothing selection. Soft, silky fabrics only. I’ve had my husband inspect the area, and there’ s nothing wrong with the skin. It seems to be neurological. It quite literally could be all in my head.

With those two things going on, I had been hemming and hawing for the last couple days, wondering if I needed to contact my neurologist. With some encouragement from my Mom and sister, I did just that. My neurologist’s office recommended starting with some laboratory tests, and are hoping to get me in to see them early next week. So I’m waiting for the next step, and doing my best to stay active and not completely lose my mind in the meantime.

The type of M.S. I have is relapsing-remitting, which means it comes and goes. You relapse, experience symptoms, and then those symptoms go away (mostly, sometimes, not always). My hearing and vision loss are permanent and have never gone into remission. The fatigue also never entirely goes into remission, but mostly it’s been manageable. Until it isn’t. Which is where I am at the moment. I am frustrated to be unable to do even a fraction of the things I usually do. Taking care of my home, feeding my family, visiting with friends.

I am grateful I haven’t been in this position for many years, and in that way I can say M.S. has been kind to me, but now that I’m here, I’m angry. I whined the other night while walking a measly 2 miles per hour on my treadmill – “M.S., this isn’t fair! You’re not playing by the rules!” This haughty response came back to me, “There are no rules here. I get to do whatever the hell I want.” It’s a serious mindf#*k, and that fuels my anger. I’m angry that it’s slowing me down. I’m angry that I can’t run. I’m angry that I have to drag the stupid cane around. I’m angry that I had to spend my Friday morning at the medical lab instead of the gym. I’m also a bit scared that I don’t know if this is a true relapse, or if I’m just overreacting (my sister reminds me this is not how I am, in general). I’m scared that it won’t go into remission this time. What if my running days are over??

But, of course, those are panicked, alarmist thoughts, and they are never very useful. I can focus on what I still have today, and hope for what I could have tomorrow. So in an effort not to get sucked into the depths of my personal pity party, that’s what I’ll be focusing on. The gift of today, and hope for tomorrow. I’m really okay. I just wanted to be honest with y’all about the realities of this disease, because I know sometimes I’m a little “rose-colored glasses” around here. And I want you to understand that M.S. really does suck sometimes. Truly. It can be cruel and unpredictable. However, It’s made me a hell-a strong human, so I’ll always be thankful for that.

Rant over. Carry on!

Disability, Exercise, Friends, Health, Low vision, Multiple Sclerosis, Running, Stories, Visually Impaired, Writing

Moving on…

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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.

Family, Low vision, Multiple Sclerosis, Stories, Visually Impaired

I’m a Human Viewfinder

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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.

Funny story, Punky, Stories

My nights are dark and silent

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I had an odd experience this morning and used it for today’s writing practice. Enjoy!

The bedroom is dark. I’ve just removed my eye mask and stood up from my bed. I slowly creep my way to the bathroom, like a drunken sailor, and look at my watch. It’s 4:24. I turn on the closet light and sit on the toilet. I don’t turn on the bathroom light because it’s too much light and I don’t want to leave my sleepy state. I fear falling asleep on the toilet. I put my face in my hands as I relieve myself. I’m still so tired, but the bladder wins every time. Once I’m done, I wash my hands and slowly walk back to my side of the bed. I always love this part. You’re chilled when the air in the room hits your bare skin, until you climb back under the covers, still warm from when you left them minutes ago. Except when you reach to pull up the covers, instead of finding the fuzzy fleece, your hand touches a warm mass of fur. You are confused. You feel around the fur, it’s long, and it’s slowly moving up and down. It’s breathing. It’s your golden retriever, who in your brief absence from the bed has taken your place. You quickly shoo her out of the bed, where she knows she is not allowed. When you climb into bed you find your pillow is not laid horizontally as you left it, but vertically. Like a savage. And now you are just fuming with rage at the audacity someone had to alter your sacred sleeping space. Who knows? Maybe it was me. Maybe it was the dog. It doesn’t matter, I’m mad at the world and my heart is racing. I’m wrapped in this warm fleece blanket again, sans dog, and I need to find a way to get back to sleep, because the sun is still hours away from rising. And it’s Saturday, for Pete’s sake. Slow breathing, think of other things. It’s fine. Your body is comfortable again, in a relaxed state. Let your mind join in. Sleep will come.

That was fun to write, but I wasn’t sure how to end it. I’ve never been great at landing the plane. Practice, Mel. Practice. This is fun!

Books, Running, Writing

Thoughts about writing

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I’ve been thinking a lot about writing lately. This isn’t new, of course. I’ve always thought a lot about writing. But while I was consumed (obsessed?) with training for the marathon, my writer brain took a little vacation. Now that the marathon training is over, and there are no races *officially* on my calendar, my writer brain has emerged its naggy head.

Also, it’s December. This means my whole brain and body are shifting into “hunker down” mode. Hunkering down for me looks likes a cup of hot coffee, cozy blankets, crocheting, and reading or writing. Sometimes I’ll crochet while listening to an audiobook, in front of my laptop so I can pause to take notes on what I’m hearing, or just jot down random thoughts that appear.

Which reminds me of a line from one of my favorite movies, “Empire Records.” Lucas – “Who knows where thoughts come from? They just appear.”

And back to my winding stream of consciousness…

The audiobook I’ve been listening to this week is “Writing Down the Bones” by Natalie Goldberg. Apparently, it’s a classic and is often used in college writing courses. I had no idea. I learned of it listening to a podcast interview with Ms. Goldberg, and immediately added it to my list of books to read. I don’t know why I waited so long. Oh wait, yes I do. I was busy running. Which brings me to the interesting comparisons Goldberg makes between writing and running. Writing is a lot like running, in that your writing muscles can atrophy when you cease practicing. If you’ve been sitting on the couch for 3 months, you can’t expect to get out and run a speedy 5k. You’re going to feel a bit rusty and sore until you can get yourself back “in shape”. The same is true of writing. I had taken an extended break from writing, had neglected this practice, for so long, that every time I sit down to write here on the blog, I feel like I’ve lost the ability to write anything well.

So that’s going to be a focus of mine going into this winter season. I’ve decided to write every day. I’m going to warm up those muscles and I’m going to practice writing, every single day. If I am going to continue to call myself a writer, I need to be writing. Plain and simple. It may not always be good, but that’s okay because that’s not the point. I’m working those writing muscles of my mind. And hopefully it will result in some useful material for the blog here, because since marathon training is over, I’ve got absolutely nothin’ lately. We shall see!

Deaf and half-blind runner with multiple sclerosis