My Greatest Fear

What's your greatest fear? Financial ruin? Food poisoning? Missing the latest episode of "Stranger Things"? Mine is the fear of being left alone. It's a very real fear for us quadriplegics. We can't move our bodies. We can't stand independently. We can't pick up a phone to call anyone. At best we have our voices. And gratefully I have mine. But I never really thought about what I would do if I found myself totally alone, unable to contact anyone for help.

It happened on an early fall Saturday in September. My husband woke me up at 9 AM to tell me he was going outside to do some yardwork. He asked me if I would be OK. "Sure, I'm still sleepy anyway. Just leave my phone on my chest and I'll call you when I'm awake for good." Famous last words! 

Somehow during my twilight sleep, I had a full body spasm. A full body spasm is when the body seizes, going rigid from head to toe. The phone fell off of my chest. Completely off. Upside down off. No matter how loud I yelled, "HEY SIRI!", she did not answer with her customary slanglish, "HUH?" 

My AI Alexa was no help either. She decided to give me the silent treatment. No matter how much I begged her to call my husband, she did not comply. She merely repeated the phone number and said, "Calling" and then… SILENCE! I tried this at least 10 times. NOTHING! Einstein said the definition of insanity is doing the same thing over and over again, expecting a different result. Yeah, I was definitely going insane.

To add to the anxiety, our 14 year-old puggle, Mel, was whining and pacing the bed (Yes, she sleeps on our bed sometimes. Don't judge.) She was anxious because she had to go potty and was hungry. I should note that a 14-year-old dog is equivalent to a 98-year-old human. When a 98 year-old is whining and pacing because they need to pee, that is NOT something to be ignored. 

Oh, it gets better (or worse depending upon your perspective). What could be worse? How about this? The door to the bedroom was closed! So no matter how much I yelled, "HELP!" or "ED!" (Ed is my husband) or "HELLOOOOO!!!", no one could hear me. And the dog couldn't get out. THE HORROR!!!

I should also mention that I could hear Ed right outside the bedroom window. He was using the leaf blower. The leaf blower?! Why would anybody need to use a leaf blower doing yardwork? The leaves were still on the trees! SMH! Plus he was streaming 80s dance music on his iPhone at full blast. ARGH!

I could've panicked (OK, I was well on my way to doing so), but instead I decided to employ my faith. James 1:22 says, "Do not be just hearers of the word. Do what it says." So I started quoting every scripture I could think of, mostly the ones about being strong and courageous (Deuteronomy 31:6, Joshua 1:9, Isaiah 41:10). Then it hit me: Why am I calling out to people instead of calling on the name of the Lord. I mean, after all, it says in Romans 10:13, "For everyone who calls on the name of the Lord will be saved." 

So after 60 minutes of trying to use my voice, my Alexa device, and my hard of hearing iPhone, I decided to do just what the scripture said. I CALLED JESUS! I called Jesus loud and strong! By this time, Mel had jumped off the bed and was scratching at the door trying to get out. I just kept screaming, "JESUS!!!!!"

Five minutes went by. 10 minutes. 20 minutes! I was going to keep calling Jesus until my voice gave out. I wasn't even worried about Mel peeing all over the place. Quite frankly, I wasn't even worried about being completely forgotten. Because I knew the Lord my God was with me. Jesus is always with me. Even when I'm in bed and my quadriplegic body can't move. He's right here. I KNOW he is. That's why I was able to be peaceful. It says in Isaiah 26:3 "He will keep in perfect peace whose mind is stayed on him because he trusts in him." 

FINALLY, my ears tingled with the sound of Mel yelping, a sure sign of Ed's return. At least 10 minutes went by before I saw his face at the bedroom door. Now the old me would have been getting hot under the collar because of this added delay in my rescue. But it quickly dawned on me that he needed to take Mel potty first. No whining required on my part. No need to get frustrated and take it out on my hero. I just waited patiently, resting in the knowledge that help was on the way. When Ed finally showed his handsome face, I was able to smile a genuine smile and say, "What a relief to see your smiling face! It is like seeing the face of God!" (Genesis 33:10)

Being left alone is still my greatest fear. But now I have the tangible assurance that God will send help my way if I just call on the name of Jesus. Jesus hears me. Even when the door is closed. Even when the leaf blower is blowing. And he hears even over 80s dance music at full blast!

Feeding Time

Do you remember feeding yourself when you were a little kid? The joy of plucking tasty morsels from the plate and popping them into your hungry mouth?

Eating by yourself. For all, it’s a foggy recollection. For most, a recent mundane memory. For me, it’s like it was just yesterday. Because it was.

MS has pretty much robbed me of my independence. I can no longer dress myself, bathe myself, or even do my own hair (and ladies, you KNOW what a blow that is to the “she psyche”). Getting my teeth brushed is a comedy of errors (“That’s too hard!” “That’s too soft!” “Wait! That’s Preparation H, dude!!”). And we won’t even go into the other girlie stuff. All I can say is thank God for menopause and makeup-free Alicia Keys!

Feeding myself is a BIG deal. I can still feed myself a little bit. Call me lazy, but it’s so much easier to let someone feed me. It’s actually quite a spectacle, especially when two people are trying to feed me at once. What should be a coordinated effort actually looks something like the Coney Island hotdog eating contest, except two people are jamming food into my mouth at a frenzied pace. Think Joey Chestnut being fed by his parents. Yeah, scary, right?

So yesterday, Ed was headed out to get some exercise, but it was also time for me to eat dinner. I instructed him to simply throw a couple handfuls of spinach, raw broccoli, beets, and some feta cheese into a bowl with the slightest drizzling of balsamic vinegar. He sat me on the family room couch, draped an apron over me, gave me a fork and left me to do some mindless eating while watching “Wheel of Fortune” and “Jeopardy”. He said he’d clean up after me once he returned.

I attacked my meal with gusto, fearlessly jabbing the large chunks of food, chewing with reckless abandon. When it got down to the dregs, I opted to employ the Moroccan method and use my fingers. When Ed returned, all of my food was gone. I repeat: ALL of my food was gone. And virtually nothing on my apron. Not to mention the fact that I’d won $54,000 in cash and prizes on “Wheel” and become the new Jeopardy champion!

My A+ effort scored me a couple squares of Lindt chocolate. Dark chocolate. With raspberries. Going for the whole enchilada tonight: an entire bar of 70% with sea salt. Bon appétit to me!

Bike the US for MS: My Virtual Ride

Faith moves. “Sometimes life hits you in the head with a brick. Don’t lose faith.” (Steve Jobs)

I was diagnosed with secondary progressive MS in 2003. After a 14 year battle to maintain mobility, I’m now confined to a power wheelchair (Boo!). But with the generous support of Bike the US for MS, I was able to buy this nifty NuStep recumbent trainer (Yay!). It helps me to keep “moving”, stay healthy, fight strong!

Faith moves. “Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” (Helen Keller)

Since I can’t ride cross-country (my power chair only holds a 25 mile charge), I’m joining the Trans Am team by doing a “virtual ride” using my NuStep. Starting today, June 1, my goal is to log 37,850 steps by the time the team reaches San Francisco on August 1.

Faith moves. “Faith is taking the first step even when you don’t see the whole staircase.” (Martin Luther King Jr.)

Here are my “groundrules”:

• Following the Trans Am route for the cyclists, I’ll NuStep 10× their mileage for each day (e.g. cyclists ride 60 miles/Angela NuSteps 600 steps). To view the Trans Am route, go to http://biketheusforms.org/routes/transam/default.asp. (It's at the bottom of the page.)

• Each day, cyclists ride from sunup to sundown, taking rest stops as necessary. I’ll do the same. It may take me several NuSteps sessions a day, but my goal is to log all the steps between sunup and sundown.

• Acknowledging my limitations with MS, there will be days that my energy will not allow me to NuStep. That said, occasionally I’ll log extra steps in a day to store in reserve for the days that MS gets the best of me.

• Along those same lines, I will do all the NuStepping on my own with no assistance. As tempting as it would be to ask someone to move my arms or feet for me, I’m determined to do this by myself. No guts, no glory, right?

Faith moves. “Without faith, nothing is possible. With it, nothing is impossible.” (Mary McLeod Bethune)

You’re invited to follow my progress on Facebook or by signing up for daily updates on my blog, A Myelin My Shoes (http://amyelinmyshoes.blogspot.com/). Time to get to NuStepping! Ready? Set? Here…  I…GO!

#RideStrong

Bike the US for MS: My Story

Who is Angela Shaw? And why does she keep “liking” pictures of people on bicycles on Facebook? The answer to the first question is still under development, so let’s tackle the second…

Born and raised in Los Angeles, I grew up indulging in every physical activity reasonable within the confines of city living. I played street football. Climbed short trees and brick walls. Rollerskated down monstrous hills. And I rode my trusty steed daily: a 1974 Pep Boys special 10 speed bike painted in bright banana yellow. We ruled the streets of View Park.

What marvelous adventures we had: speedy rides to the library; super treks to the beach; escapes from neighborhood canines, irritated neighbors, and big-time bullies from around the way. When I went away to college, hauled it across the country to Iowa in the days when baggage handlers were absolutely clueless how to board a bicycle (“Dude, does this thing need a ticket?”). We had high times in the Midwest as well, patrolling roads lined with cornfields, cows, and the occasional swine.

Alas, it was in Iowa that I lost my faithful friend. It was stolen off the porch of my first apartment building, a 19^th century Cape Cod flipped to create cheap student housing. Snatched from the wooden stair rail it was attached to, I never saw my banana yellow bike again. And I learned a valuable lesson: Never trust the wooden stair rail of a 19^th century Cape Cod.

The next bike I got was when my husband and I were newly married. We lived in Northern California at the time. We spent many a weekend patrolling the bike path that paralleled the American River. I remember he outfitted his pedals with racing clips. Brave man. Knowing that my feet were unlikely to adapt to the trappings, I declined. I wanted the assurance that, if I ever had to jump off of my bicycle because of an impending crash, my feet were free to leave. The thought of being found with a bicycle wrapped around my body, feet still attached, was unnerving. More importantly, there would be some serious “swag” damage. I have my pride.

My last cycle was a “mom” bike, with thick road tires and horizontal handlebars. I only rode that one a couple of times, the last which resulted in horrible crash alongside a busy expressway. You would’ve been proud of me, though. I got right back on the bike, pedaled 3 miles, and arrived at my destination (a ladies meeting at church) with skinned knees, hands and bloody forehead. Yeah, God put the kibosh on that pride thing but quick!

That happened in 2001, two years before my MS was diagnosed. I haven’t ridden a bike since. I miss the feeling of exhilaration cruising downhill at top speed, the amazing sense of accomplishment of conquering a steep climb, the freedom of feeling the wind blowing across my face, fresh air energizing every cell in my body. The closest I get to that feeling these days is hitting the streets in my power chair ramped up to full speed. We don’t do downhill. I digress…

Fast-forward to 2010. After long, full careers in the military and ministry, my husband retired and moved us to Charlottesville, VA. We needed to slow down. We needed room to breathe. We needed to find connection with a community that understood the challenges of living with MS. Charlottesville not only had top medical care through the James Q. Miller MS clinic. It was also home to a well-established chapter of the National MS Society. Golden!

On June 3, I received a phone call from the chapter. “There’s a group of cross-country bike riders coming through Charlottesville today. Would you mind coming by to meet them? I think you’d be an inspiration.” (Nice move. Flattery will get you anywhere. Uh oh! There is that vanity thing again. Ha ha!) Nevermind inspiration part. I was going to meet some people who were able to do what I now only dreamed of doing. And they were doing it to fight MS. “I’m there!,” I shouted. We jumped in the car (okay, my HUSBAND jumped in the car after tossing me in the passenger seat) and sped to the meet up location.

My heart raced at the thought of just seeing bicycles. And to meet a crew about to traverse the United States? Beyond exciting! This was something I always wanted to do. Even though my physical ability was nonexistent, the thought of “riding” vicariously was more than enough for me. And they were doing this to fight MS. Awesome!

After drooling at the site of shiny, shiny road bikes, I got to meet some of the riders: a recent college graduate; a father and his two sons; a woman recently diagnosed with MS; a sixtysomething gentleman riding for a friend. And one swarthy fellow who just liked to ride his bike and stop for a brew every 100 miles or so. They were happy. They were humble. They were SO looking forward to the journey. SO pumped to ride for the cause. We shared photo ops, hugs, high fives and handshakes and promised to keep in touch with each other via social media. There was an immediate connection among us. And as anyone in the MS community will tell you, connection is the #1 enemy of MS. Connection counts!

For the next 60 days, I followed them via Facebook and Twitter. I swooned over every picture. Smiled at every triumph. I sent encouraging tweets and posted about their journey all along the way. And I cheered with tears in my eyes the day they dipped their tires in the Pacific Ocean. 3500+ miles coast-to-coast. All to bring awareness to the cause, to help those in need through service projects, to deliver much-needed funds for ongoing research, programs and services. All in hopes of a cure.

Bike the US for MS. I’ve followed this amazing group every year since that very first meeting in 2010. They come through Charlottesville every June 3, and every June 3 I do my best to be there to welcome them. (Yes, I will be there this Saturday… Woo Hoo!) To thank them. To have just a moment of camaraderie with others who use wheels for transportation. (Wheelchair. Power chair. Bicycle. We all gots wheels!)

So that’s why, for the next 60 days, your Facebook news feed will show my “likes” of all these pictures of people riding bicycles. These are my people. My sheroes and heroes. My warriors in the fight against MS. And keep your eyes peeled. One year you just may see me among them. Ride strong!

Infusion Day

Infusion Day? Oh, it’s the best!

Every 28 days through the year

A new lease on life as I battle MS

Tysabri keeps me in gear.

Without it I feel very strange 

Thinking slow and memory pale

Like a car that needs an oil change

My movements seem slow as a snail.

My Hero waits patiently all the while

Three hours from start to finish.

Quick with a joke to make me smile

Sharing bites of sushi with spinach.

Once I’m infused, the energy’s back!

I’m wired and ready for sound.

Memory clear, I’m sharp as a tack

A new lease on life I’ve found.

103 infusions, still going strong,

103 sticks I've endured.

Nine years of fighting. Yeah, way too long.

Won’t end until there’s a cure.

Seeing Clearly through Brain Fog

Brain fog. That vague feeling of ineptitude. You’ve got the ideas. You’ve got the thoughts. And you know the words are in there somewhere. But you just can’t get your ducks in a row. You can’t string your thoughts together. You have the words on the tip of your tongue, but they are falling off the precipice of that mental block you’ve hit.

Brain fog is, clearly, a very real condition. Everyone experiences this cognitive hiccup from time to time. However, it’s a particularly prevalent symptom of those living with MS. In fact, more than half of all people with MS develop problems with this and other cognitive functions. Difficulties include…

• ·        Information processing (dealing with information gathered)
• ·        Memory (acquiring, retaining and retrieving new information)
• ·        Attention and concentration (particularly divided attention)
• ·        Executive functions (planning and prioritizing)
• ·        Visuospatial functions (visual perception and constructional abilities)
• ·        Verbal fluency (word finding)

Yesterday I had my weekly physical therapy session at HealthSouth. I just started back again after a two-year hiatus, way too long to be living with MS without professional input. My PT (physical therapist) is a rock star! She’s super knowledgeable about MS and employs the latest methods to keep her patients fighting strong.

During therapy, I lay on a therapy mat while my PT moves my limbs in order for the brain-body connection to occur. My job is to think through the motions as she does them manually. The hope is that my legs and brain will partner together to allow independent movement. I really have to concentrate. If I don’t, no relationship is established between the brain and the body.

I was having a brain fog day, so I had to work especially hard to not have my attention divided. Did you read my “Decisions?…” post the other day? Yeah, so you see how my brain works and how I can be easily distracted.

She put my leg up on her shoulder to stretch it. While doing so, she purposely said, “I’m putting your leg up on my shoulder to stretch it.” My job is to hear the words and see the action in my mind, “willing” my leg to do it independently. But my neurons began to wander and I’m distracted by my thoughts…

“Whoa! She’s really stretching that leg. I bet this is how a rubber band feels when it gets stretched. Rubber bands. I like the little red ones. They remind me of SpaghettiOs. Tasty, too! I should know. I had my stomach pumped when I was 3 after eating a whole bag of them…”

“So, how does that stretch feel, Angela?”

Whoops! My attention snaps back to the moment. I’m supposed to be concentrating on making a brain body connection, aren’t I?

“It’s okay. Not too bad.” No, really. It wasn’t bad at all.

Next, she asked me to lie on my side in a relaxed fetal position. “Now, take your free arm and punch it forward, then pull your elbow back.” Right! Arm forward. Elbow back. Got it!

I laid there motionless for a second. Processing, processing, processing…

“You okay?,” she asked quietly. Perhaps she thought I’d fallen asleep.

And then it happened. Connection made! I punched my fist in front of me like I was pushing a door open. Then I pulled my fist back like I was closing the door, pulling my elbow behind me. Success!

Now she asks me the $64 million question…

“Tell me, what muscles do you feel yourself using when you do that?”

Oh, c’mon! Now I’ve got to use my “word finding” skills, too? Okay, you can do this. Think, Angela. Think!

“My abs!,” I said resolutely. “My abs.”

A moment of silence.

“Yes! That’s right!,” my PT exclaimed. “You’re using your abs to balance yourself on your side and to move your arm back and forth. Good job!”

So, in spite of brain fog, I was able to get through my PT session successfully. And the bonus? I remembered the exercises from yesterday and was able to duplicate them again this morning. Booyah! Take that, brain fog!

Decisions. Decisions? Decisions!

Congratulations! You just exercised your cognitive skills. How? By clicking on the link that brought you to my blog. You had to make a conscious choice of what to read at this very moment and I, for one, am honored that you would choose my random meanderings about life with MS.

I never quite understood what was meant by the term "cognitive skills" until MS. That's because difficulty with cognition is very common in people with MS, so you better know what it is you're up against. Difficulties include attention span, memory, producing and understanding language, learning, reasoning, problem solving, and decision-making. I've had run-ins with every one of these cognitive hiccups, but the bane of my existence is decision-making.

Some people like having lots of choices. They are the ones whose mantra is "variety is the spice of life". That's all well and fine if you're accustomed to adapting quickly and making decisions on the fly. My MS makes it hard for me to be spontaneous. There is no such thing as a quick decision.

Let's say you and I go to Ben & Jerry's for a double scoop sundae. My treat! You step right up to the counter and order a Cherry Garcia Waffle Cone Sundae. Wow! I'm so impressed with your depth of knowledge of the menu choices and your unflappable resolve to get exactly what you want. I, on the other hand, am completely overwhelmed by the flavor selection (not to mention having to sort through all the clever names).

Now you might say, "Well sure, Angela. Who wouldn't have a tough time deciding between all those delicious flavors?" True. But then not everyone has MS. My thought process goes something like this:

"Whoa! They sure have a lot of flavors here. I like chocolate. Let's see what they have in chocolate. Hmm... Chocolate. Chocolate Fudge Brownie. Chocolate Chip Cookie Dough. Cheesecake Brownie. Oh, that sounds good. I like cheesecake. Do they have any other cheesecake flavors? Wait a minute, if I'm going to eat cheesecake, I should go to Cheesecake Factory. But the closest Cheesecake Factory is an hour away. I want something now. But do I want ice cream? Maybe we should go to Five Guys first. I wonder who the five guys are. Are they brothers? Are they friends? If one of them is a woman, is it really fair to call it Five Guys?"

By this time the server has grown quite impatient with my inability to decide and the mom with a trio of rambunctious kids is giving us "the look" trying to hurry us along. Tasting doesn't help. My tongue is as confused as my brain which controls my tongue. (Got that? Great! Your cognitive skills are super sharp today!)

In an effort to maintain the peace, you gently suggest, "How about something simple like Chunky Monkey? I hear that's really good!" My mind begins to spiral out of control:

"Ba-Ha-Ha-HA! Chunky Monkey: the King Kong of Ben & Jerry's flavors! King Kong. What a great movie! They've remade that so many times. My favorite will always be the original because the animation is so hokey. I especially liked the fight between King Kong and the dinosaur. Classic! I love classics. What would be classic ice cream? Chocolate, vanilla and strawberry. Neapolitan ice cream. Didn't like the chocolate. The strawberry tasted fake. The only thing reliable was…"

The tension in Ben & Jerry's is palpable. The silence (with the exception of the Britney Spears Muzak droning in the background) is deafening. Any moment now the server will lose his minimum wage required smile and the mom will wind up her Mommy backpack to take a swing at me.

"I'll have a scoop of vanilla on a sugar cone."

Sigh… Once again I succumb to taking the path of least resistance because decision-making is just so hard for me.

I'm getting better, though. I've come to understand that decision-making takes a lot of work. It takes focus ("I am here to get an ice cream sundae."), memory ("My favorite flavor is chocolate."), resolve ("I am getting a hot fudge sundae with chocolate ice cream."), and a healthy sense of humor ("This'll be a sugar high worth posting on YouTube!").

So let me know when you're ready to go to Ben & Jerry's. I'm ready!