Funny story – Back when I was working I set up a dummy account with my actual email for testing a new web portal. That was over three years ago. Just this evening I received an email from the company urging me to engage them to have my tax returns prepared, only it was addressed to my alter ego… Matilda Redmond.
First it gave me a chuckle, and then it brought back some memories I had left in the past, where they belong. The job I had when I lost my hearing was a really stressful job. I’ll admit now that I hated it. I missed my coworkers when I was forced to go on disability, but I didn’t miss the stress of the job. I had nightmares for almost a year following my departure. However, with the passage of time and the progress of my recovery, I no longer have those nightmares. And I do sometimes miss aspects of the work I was doing – the accounting portion – and wonder if some day I’ll be able to do any of it again.
For now I’m content balancing our checkbook on an insanely regular basis, and managing our family budget. Also, after receiving that email addressed to Matilda, here’s to hoping the nightmares don’t start up again tonight!
Is chaperoned even a word? It sounds weird. Well, either way, it’s what I did today. I went along on a field trip for my son. I passed out papers to kids, I supervised and walked them around a museum. It was a lot of fun overall, but also extremely challenging for me. From the get-go I was out of my comfort zone because I rode the school bus with a gang of fourth graders. Buses are loud, fourth graders are loud, it’s all loud. And since my cochlear implants can only process a handful of noises at any given moment, it was all just a bunch of gobbled-gook to my brain. But the bus ride was really the easy part.
Once we arrived at the museum, I was in a little more shock. It’s just hard walking around unfamiliar places, and even harder when you are with a bunch of people unfamiliar to your specific needs. I mean, on the outside I look completely normal. Well, except for the cochlear implants, but I think most people assume that since I have them, I have no trouble hearing the way they do. I had not tried to explain to any of the adults that I could only see clearly within a small field of vision eight or ten feet ahead of me, or that in loud situations I need to be standing near the speaker, within lip-reading distance. So when the person in charge is talking to the group, I have no idea what they are saying. When they say something funny and everyone is laughing, I stand there feeling rather idiotic. I mean, I never know if what’s being said is important for me to know or not. They could just be giving a history lesson, or they could be giving instructions for where to go and when. If it’s the latter, I would kind of need to know, since I was being put in charge of a small group of children. In hindsight I guess I should have done a better job educating the teacher. But, all anxieties aside, I managed and we all had a good time. Luke and another student both helped me to know what was going on, so there wasn’t much problem there. Also, we were given thorough hand-outs detailing the schedule and location of each segment throughout the day.
So I guess you could say the day was bittersweet. On one hand it was fun, and really awesome that I was able to be there to support my son and his class – he had begged me to chaperone – and on the other hand it was bittersweet. I felt a lot more impaired than I usually do. It was a big stretch out of my comfort zone and away from my physical capabilities. But I think Luke understands that, as he is an empathic kid, and he appreciates that I had the courage to do it. He knows I only do it because I love him.
Oh boy. The days just keep moving along, don’t they? And I feel like I’m forgetting something, constantly. Sometimes I actually am. Usually I’m not, or I am but it’s inconsequential. But I do remember I said I was going to blog about something… the 5k I ran last weekend, perhaps?
Okay, yes. Last weekend I ran my second ever 5k, the Hot Cider Hustle. I signed up for this race back in August, with no other runners committed to running it with me. I had just decided that I needed to get it on the calendar, to give me something to work towards. And if anyone else ran it with me, even better. Then football schedules came out, and it turned out my husband and my son both would not be able to be there, as they had their respective football responsibilities. So it was just going to be me and my daughter. Now, I could get us there with the trusty Spec-Tran, but the problem would be that my daughter would be left alone while I ran the race. Not an option, as she is only 6. So a dear friend of mine offered to take us to the race and sit with my daughter while I ran. That is the first thing I had to be grateful for that day, but it gets better.
As we were driving to the park where the race was being held, I received a text from another dear friend, telling me that she was there, and had just signed up to run! She had run my first 5k with me, signing up at the last minute for that race as well. I love happy surprises. The first race I finished before she did, but only because she hadn’t even been training. This second race I was able to keep up with her new pace for most of the time, but towards the end as it got more crowded I wasn’t able to keep up with her and pass all the people safely. We plan to run more races together, and hopefully next time she won’t wait until the last minute to sign up!
And my most favorite part of this race? My big brother drove up to run it too. He told me just a few weeks prior to the race that he was going to join me, and I was both shocked and thrilled. I hadn’t even asked him to run. Why would I? He lives an hour away, and he’s a serious runner. He’s run marathons, so these 5ks are small time for him. I’m still not entirely sure why he decided to do the race. Part of it maybe was him missing the thrill of it, but I believe a bigger part was his desire to support his little sister (at least that’s what I’m telling myself). Of course he was a huge support to me, big time, and I’ll never forget it. Since he finished the race long before I did, he was able to run right alongside me during my final mile, coaching me to the finish.
This was definitely a difficult run, especially after I lost my friend in the crowd. I had to be sure I was on the right course, because there was a 10 mile race going on as well, and signs directing the runners. I only lost my balance once, and fell into the runner I was trying to pass, but I apologized and kept moving on. No harm, no foul. My brother suggested I get a bib to wear on my back that tells people I’m disabled, so that they don’t assume I can hear them, or that I can maneuver the way the other runners can. I think it’s a great idea, and I’ll definitely be looking into it for future races.
After I crossed the finish line, my brother came around to help me walk, because I really am a mess during those minutes following, when I’ve stopped running. The race volunteers were concerned, but my brother and friend (who had joined in helping me walk) assured them I was fine, that I had MS and I just needed to rest awhile. It may seem silly, but it makes me feel proud for people to know I have MS, and am running in spite of it. I may not run fast, but I’m running, and I’ll keep running until I’m forced to stop.
So, at the end of the day, I ran a very satisfying 3.1 miles in 38 minutes, 34 seconds, and was able to celebrate and share in that achievement with my big brother and two very good friends. It was certainly a day I’ll never forget.
My husband’s employer loaned us a trike for me to try, and perhaps keep if I like. I guess they had purchased it for a single purpose and no longer needed it, so lucky me! It definitely makes riding feel a lot safer for me.
So Monday the kids did not have school (something about Columbus) so we decided to ride bikes up to the store to get donuts and hot cocoa. All was going well until I hit a rough patch of pavement, throwing the trike off course, and eventually me with it. It felt like slow motion but was really only a matter of seconds. I found myself pinned to the edge of the road, this enormous tricycle and basket on top of me. The kids looked back and immediately ran to help me. Thank goodness for them, really. I don’t know what I would have done if I had been alone. It was a pretty scary fall, and I shredded my elbow, so I was bleeding quite a bit for the rest of the trip. Thankfully we were able to snag some band-aids from the donut shop.
The rest of the trip was lovely, with the donuts and cocoa, and then some shopping, and then lunch at a new restaurant that had just opened that day. Best chicken shawarma ever!
But then today. Have you ever been in a car accident, and you hurt worse the following day? It’s a ridiculously delayed reaction from the impact. That’s what’s going on here. I underestimated the impact of that fall. My entire upper body is in excruciating pain and I am finding myself to be the biggest wuss about it! I am such a big whiner baby right now, and so I’m just gonna try to sleep. Last night I kept rolling over on my elbow and it would wake me up and that was just annoying, so hopefully it leaves me alone tonight and let’s me sleep.
I am always telling you all to be thankful for the day and enjoy every moment so now I’ve gotta remind myself to take that advice. Come on now Mindy, it’s just a little aches and pains, be thankful you’re alive. You could’ve been run over by a car, after all! Get some rest now people… get some rest.
Does anyone else on Facebook get those daily reminders of things you posted “On This Day” in prior years? I’ve been getting them for some time now, and lately it’s been a heavy feed of reminders of the days leading up to my MS diagnosis 7 years ago. Today was no different. My status posted on 9/29/09 was this:
“Mindy has been having new symptoms creep up and is kind of freaked out about it.”
One of my comments on this post was this – “I don’t know, they didn’t SPECIFICALLY rule out larvae. I’ll have to ask 😉 But in all seriousness, I’m really just praying it’s not MS.” (This was in part a reply to a coworker friend who had been joking that this was all being caused by larvae in my brain. It wasn’t.)
I think on a deep level I knew it was MS before I was given the diagnosis, even though I was praying against it. In fact, I vividly remember sitting at my desk during a lunch break, scouring the internet for explanations to my symptoms. I landed on a page at the National Multiple Sclerosis Society website that described the many possible symptoms of MS. They listed common symptoms and less common symptoms. When I saw “itching” described among the uncommon symptoms, tears welled up in my eyes and I had to catch my breath.
From the National MS Society: “Pruritis (itching) is one of the family of abnormal sensations — such as “pins and needles” and burning, stabbing or tearing pains — which may be experienced by people with MS.”
This was exactly what I had been experiencing around that time, in my upper arm, and it was by far the most painful of the symptoms I had been having. It was the word – stabbing – that caught my attention. I hadn’t thought to use that word to describe it, but that was it, that was it exactly. So to see it described that way… well, I guess I just knew. At that moment, I knew.
The rest is history, I guess you could say. I’m not certain of the exact date I was diagnosed, but I’m curious to see if it comes up on my Facebook feed. I know it’s coming soon, the anniversary, but I’m not sure if I posted it publicly at that time. I guess we’ll see.
I think the most interesting thing to me as I reflect on those days is that I remember the absolute dread I felt, and the fear and uncertainty of it all. I knew nothing of MS at that time, and I really believed it would be a death sentence. I thought it guaranteed a miserable life spent home bound and dependent on others for everything. I was so scared… so, so scared.
I was also very wrong; I look at where we are now, and I am so grateful for my life. MS is just one of the many challenges our family has faced, and through prayer and patience we are coming out of each one stronger and stronger. It’s just like that saying, that what doesn’t kill you makes you stronger. MS can certainly be scary, all unknowns it brings with it, but it doesn’t have to be. No one is promised another day on this earth. No one is promised health and wellness. We must be grateful for what we have today, and really learn to appreciate and embrace each moment. I am learning step by step to do this, and I encourage you to do the same. Carpe diem, folks, carpe diem.
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34
As happy as I am to have the kids back in school so I can have “my time” back, I must admit I really enjoy their company when they are home. Especially as they are getting older, it seems. Today was especially memorable.
My son woke up at 5:30 this morning (in hindsight, he said that was earlier than necessary) to make homemade pancakes for the family. His intention was to surprise me, but his nosy sister spilled the beans last night at dinner. That didn’t matter though, because in the mornings I have a hard enough time remembering which button to push to snooze my alarm. So I was still surprised, and delighted, really. He makes really great pancakes! Of course he learned from the best (wink, wink). What I loved about this gesture is that it was genuine. He almost seemed to be doing it as a thank you to me, for everything he sees me doing. This is the first year he’s been entirely responsible for packing his school lunches, and I wonder if that’s sinking in with him already. I’m tempted to say it’s making him more grateful. It makes a momma proud.
That was memory #1. Memory #2 was far less significant but still worth mentioning.
My daughter loves the library. She loves reading books and loves that they are free. Also, she still loves horses. This morning she was telling me about the book she just checked out from the library. She said it had the ‘a’ word in it. I looked at the cover. Out was a horse book, and it was clearly a children’s book, so I thought a second more. Then it dawned on me: they were talking about a donkey. Ha! So I explained to her that in that context, it was just another word for a donkey, and that was ok. But when she asked if it was okay to read it out loud at school, I told her I was fine with it but that she would have to run it by her teacher, because she would have to be sure the other kids understood it was not a swear word when used that way. Maybe they could have a class discussion about double meanings and word origins. Might not be a bad idea!
So I started the day with some great moments with the kids and now I’m at the infusion center getting my monthly Tysabri treatment for MS. A typical day in the life of Mindy, you could say.
Also, it’s Friday. Thank the good Lord that you were given the gift of another day, and go out and make it count!
In case my kids ever claim we never do fun things…
June 9 – last day of school, kids went to Grandma’s
June 14 – Dentist! (Okay, that’s a joke)
June 17 – Biked to Holt Plaza
June 17 – Lugnuts baseball game, camped out on the field with the Girl Scouts
June 18 – Selleck family cookout at Oma and Opa’s
June 21 – East Lansing Aquatic Center
July 1–3 – Dundee/Splash Universe
July 4 – Independence Day, Fireworks
July 6 – 8 – Camping with Johnsons
July 15–17 – Garden City Tournament
July 22 – Went downtown (library, Subway, The Peanut Shop)
July 23 – My class reunion, kids at Grandma’s
July 26 – Lake Lansing Park & swimming
August 2 – Ingham County Fair
August 3 – Bowling
August 6-7 – Weekend with the girls (my sister and nieces)
August 9 – Valhalla Park & swimming
August 10 – 13 – Camp Albright
August 18 – Valhalla Park & swimming
August 19 – Michigan’s Adventure
August 26 – Impression 5
QD Donuts at Holt Plaza
9/11 Memorial at Holt Plaza
Walking around the bases with the Girl Scouts
Camped out on the field
Dentist visits can be fun
Ice cream at the aquatic center
Dundee Cabela’s
Eating lunch downtown
Splash Universe
Day camping in the front yard
Waiting for Independence Day fireworks
Fireworks!
Finding frogs (toads?) at camp
$1 Snow cones at the Garden City tournament
Queen Nails manicure
The Impression 5 mouth
Some fun things are on the list, but not in the pictures, or in the pictures but not on the list. And then others didn’t make either, but the memories were made nonetheless, and we will cherish them all. We had quite a summer. Now school starts TOMORROW and we are all so excited! What was your favorite memory from this summer?
Most days, usually at night, I get a burning sensation in my feet. My neurologist calls it nerve pain, and it is another common symptom of MS. It feels like what I would imagine walking on hot coals would feel like. Or say, if you burned your hand on the stove, and the pain lingers. It’s extremely painful. When it happens at night I can usually fall asleep despite the pain, but when I can’t I take the Neurontin my neurologist prescribed. Because Motrin and Tylenol won’t work for nerve pain.
It’s funny, I had this type of nerve pain seven years ago, in the months leading up to my MS diagnosis. Thing is, the pain was in my upper arm. It was so painful I couldn’t even get to sleep, because any time something touched my skin (like the blankets on my bed) it would send sharp pains all through my arm. It was excruciating. I remember my husband had the genius idea of cutting the toe off one of his socks and using that to cover my arm. It worked like a charm, and protected the skin from rubbing up against anything while I slept. So for awhile I was sleeping with a tube sock on my arm! Funny the things you remember.
This morning I was feeling the fiery feet again. I don’t know if it seemed more intense today because I wasn’t trying to go to sleep, but it was definitely worse than normal. The pain was mostly in my left foot, which I suppose is the side that usually gives me the most trouble when my nerves are acting up. I couldn’t even bear to walk, the pain was so bad. I had to have my son go get the Neurontin for me. Thankfully that helped, at least enough to get me walking again. I can still feel the burning, but it’s definitely calmed down.
So, I haven’t been running like I was, simply because summer is so busy with the kids, and the heat wears me out so much. However, I’m anxious to get back to it. This is not because I like running, so much as I like what it does for me. I’ve said all along that it helps my fatigue levels and my balance is better. So, with that in mind, I’ve been wanting to get back to regular runs, even if they are short. I think to get back in the habit, I need to do it daily. Which means I’ll have to run today with the fiery feet. Who knows, maybe the running will take my mind off the burning? I guess I won’t know until I try.
When I came to bed last night I found a note on my bedside table from my son. He was asking if we could go to the library the following day, and if so, he asked that I wake him up. That last part is laughable because he’s an early riser – no way am I getting up before him. But I was touched by the request anyway, and super proud that with one week left of summer, my kid wants to walk two miles to READ.
We had a great time. Luke checked out some Michigan Chiller books he had been wanting to read, and Natalie perused the children’s cookbooks. Then they both put on a couple puppet shows for me, and we headed back, stopping for lunch on the way.
Nothing super special, but we all really just enjoyed each other’s company and had a good time. These are the times I hope they will cherish and store away in their memory banks for years and years to come.
1. I’m type A, lists help me function. I feel discombobulated sometimes and I get confused (especially later in the day when I’m fatigued), and making lists just really seems to sort things out in my brain and help calm me down.
2. I went to my high school reunion Saturday and it was even better than I had anticipated. Most of the girls I was close with in high school were there, and it was *refreshing* to sit and catch up with them. Ha! I’m so glad I found that word, refreshing. I think I’ve been subconsciously searching for it since Saturday. Anyhoo, yes, it was refreshing. I didn’t realize it at the time of course, but it was. It was refreshing because all of these people knew me when I was young and carefree (to an extent, I guess) and they treated me that way. They remembered the old Mindy, and seemed to remember her fondly, but were also overwhelmingly accepting of the new Mindy. Everyone was sharing different memories – just the good ones, of course – and it was interesting what some of us had remembered and others had forgotten. It was nice. No expectations, no judgments. Oh, and also my husband, who had been not-so-secretly dreading the event, enjoyed talking with people throughout the evening, and as a result I never felt rushed to leave. It was a great night, and I think we all left ready for the next one 🙂
Class of 1996, 20 years later
This picture only represents about a fourth of our class, which was small to begin with, but in this case the old adage “quality over quantity” definitely applies. What a great group of people. Oh, and if you’re having trouble finding me in this photo, I’m in the front, fourth from the right with the ginormous tattoo on my arm.
3. Life is short. Just days after our class reunion, while everyone was still sharing photos on the private Facebook event page and discussing ideas for the next one, we were informed that one of our classmates (who was unable to attend the reunion) had passed away. On the same night of our reunion, her family’s van was struck by a drunk driver. Her husband and two children were injured as well, but her injuries were much more serious. She passed away late Monday night. Her name was Lorri, and she was literally a friend to all of us. Seriously, I don’t think there was a mean bone in her body. She was kind and caring, and always ready to share a smile. She will be missed by so many in varying degrees, but our hearts break the most for her husband and children. To lose your wife, your mother, so tragically is unimaginable. And all because some bonehead (I had to put it mildly to keep this PG, but insert R-rated insults if you wish) decided to get loaded and get behind the wheel of a vehicle. Senseless, reckless, stupid, stupid, stupid.
Ok, so I know that’s a major downer, and I promise I won’t leave it at that, but I want to say some things about all this. One – never ever drink and drive. Don’t put yourself in a position where you may be tempted to drink and drive. Hand the keys over, make arrangements, whatever you must do, while you’re still sober and thinking clearly. And two – it floors me how people have been rallying together to support Lorri’s family through this tragedy. Not only has her husband lost his wife, but he was injured as well. They are going to need a lot of help going forward, and thankfully they seem to be getting it. All the good that Lorri poured into people’s lives throughout her life is coming back to her family. A sick twist on paying it forward, I suppose, but it’s still comforting to see.
4. We finally sold our house, the one we moved out of last August. The closing is scheduled for tomorrow, and we couldn’t be more thrilled. My husband grew up in that house and it was also the first home we had purchased, so there’s a twinge of bittersweet there, but our new house and neighborhood make it all okay. When we come home at the end of the day, we are among friends, and we are in the first home we chose for our family. And we have a garage, so who’s complaining? Tomorrow it will be official. No more second lawn to mow, driveway to shovel, utilities to pay. Such relief. Goodbye, South Holly Way. You were good to us, and we thank you.
5. Summer. Friends. Children and their friends. We are making the most of it, for sure. Some days we play, some days we rest. Some days I clean. The screentime rules I usually set for vacations have been neglected repeatedly, but not entirely forgotten. I make the rules around here, and I say it’s okay. So there.
6. Feeding the children. That’s a thing that must be done. Now, in fact, so I’m outtie. Have a superb day, bloggy people. Embrace the moment and hug the ones you love!!!
Deaf and half-blind runner with multiple sclerosis
just a few weeks prior to the race that he was going to join me, and I was both shocked and thrilled. I hadn’t even asked him to run. Why would I? He lives an hour away, and he’s a serious runner. He’s run marathons, so these 5ks are small time for him. I’m still not entirely sure why he decided to do the race. Part of it maybe was him missing the thrill of it, but I believe a bigger part was his desire to support his little sister (at least that’s what I’m telling myself). Of course he was a huge support to me, big time, and I’ll never forget it. Since he finished the race long before I did, he was able to run right alongside me during my final mile, coaching me to the finish.
Little M.S. Runner 