The Sum of Me.

A Vestibular Anniversary.

I recently celebrated another birthday and got out my calculator to figure out exactly how many days I've been alive. I have been living for 19,725 days (including leap years).

Of those 19,725 days, I would say that there are probably around 500 that I would classify as memorable if I were prompted by a date, a photograph, or a memory.

And of those 500 days, there are maybe around 20 that are truly significant. Days that have been life changing or life altering. Days that I can recall the smallest of details without having to think too hard about it. Days that have somehow redefined my life. My marriage, the birth of my children, the death of some family members, or major world events. 

And then there is this day. June 25th, 2018. The day I got Vestibular Neuritis.

June 25th, 2018. My last 'normal' day.

My calendar tells me that there are certain days that should be observed differently. Red letter days that stand apart or are set aside for religious, cultural, geographical or historical reasons. Then there are other more personal days that I consider special. Birthdays, weddings, graduations, baptisms and anniversaries etc.  But then there is this day. My vestibular anniversary. It will be next week.

Unlike other anniversaries, it won't involve any kind of celebration. There won't be balloons and cupcakes. But neither will I flip through old photo albums and cry about all the good times I used to have before having a vestibular disorder. It's not a happy anniversary, but it isn't a sad one either. However, since this day has split my timeline in two :- B.V (before vertigo) and A.D (after diagnosis),  and since this day will directly affect  how I spend the rest of my days, I feel somehow that something should happen. Like it or not, this day is significant and holds more weight than most of the other days. It will come and go whether I choose to observe, recognize or even acknowledge it. 

Perhaps I'm overthinking it. Maybe I'm trying to attach too much meaning to an event that doesn't really need it.  Maybe this is an anniversary where I don't need to do anything.  Maybe it can just be a day of simple reflection. Of looking back and seeing how far I've come.

Do you observe your vestibular anniversary? If so, how?

I Want To Give Up

I've been discouraged this week and I just feel like giving up. Of course I'd like to be done with my vestibular disorder, but I also feel like giving up writing.

I received some negative feedback both publicly and privately about a post that I wrote. I also lost a few followers on my Facebook page too. And it's all weighed very heavily on me.

Now, I should also say that I have received some positive feedback too. However, it's always the negative voices that scream the loudest. And those are the voices I've been listening to.

Writing has become very important to me recently. It's somehow been a way for me to process my feelings about living with this disorder. But these last few days have made me wonder if it's worth it or why I even bother. I thought about deleting both my blog and my Facebook page, and with my finger hovering over the delete button, I was reminded of another time when I came close to quitting something important to me. I almost quit my first marathon.

I started running on my 40th birthday My initial goal was just to lose a little bit of weight. But eventually I fell in love with running and joined a running group. Within in few years I'd run five half-marathons, so running a full marathon seemed to be the next logical step.

Throughout my twenty four weeks of marathon training, I was one of the slowest runners the group. I found the training really difficult, and always seemed to be straggling behind. Most of the other marathoners in my group had set a specific time goal for the day of the race.. As for me, I personally didn't have very high expectations of myself. I simply wanted to finish. 

Marathon Group ready to race.

The day before the race, I had an accident while gardening and spent three hours in the emergency department. I'd badly burned three fingers of my left hand on the engine of the lawn mower (don't ask!). I expressed my concerns to the attending physician...he simply laughed and said "Unless you're planning to run the marathon on your fingers, you'll be fine"

But I wasn't fine.

Right from the start, I was having a hard time keeping up with my running partner, Chae. We had trained together, and if anything, I'm a usually a little faster overall. But by the 21 km mark, I was falling behind. I told Chae to go ahead and promised I'd be right behind her.

By 25 km's, my fingers hurt, my legs felt heavy and the first signs of fatigue began to set in. I slowed down even more.

I don't remember much about the next 10 km's, except that I was going through a busy park with very narrow paths. I saw lots of families, strollers, people on skates, people walking their dogs, but no runners or mile markers. Somehow I must have taken a wrong turn. I was lost. 

Eventually I got back onto the the right path and crossed the timing mat at 35 km's. I was now on the highway and stared at the long road ahead of me. I still had 7 km's to go. I'd been running for hours and my legs had turned to Jell-O. I was exhausted.

Close to tears, I started to walk. Thinking that music might be a good distraction, I got out my sons iPod. But since I could neither run nor walk to the beat, I found the music irritating. Actually it was annoying. I tried putting the iPod back in my pouch, but it wouldn't fit right. I then tried to tuck it inside my shirt, but it was too uncomfortable. In a fit of frustration I  just threw it to the side of the road. Yes, his new iPod discarded like a candy wrapper. I'd had enough. I think this is what they term "hitting the wall". The point in the race when you run out of physical energy and have to rely on mental strength.  I'd heard about "the wall" but it was supposed to be for a fraction of the race. For me, the entire race felt like the Great Wall of China. I wanted to quit.

At around 37 km's I came to an intersection. The police officer who was directing the traffic, blew his whistle and raised his arm to stop the cars so I could safely cross. I tried to run the few metres it took to cross the street and couldn't even do that. I was so embarrassed. The police officer yelled at the drivers "Stop - marathoner coming through..." I angrily spat back at him "I am NOT a marathoner". He took my hand and very quietly and very kindly said, "Young lady, even the last marathoner is still a marathoner"! And then I completely lost it.  I took one step toward him, buried my face on his shoulder and burst into tears. Right there in the middle of the street, I sobbed my heart out on a police officers shoulder. After a few moments, he said, pointing to his watch... "I have a job to do, and so do you..."   Gently pushing me forward, he said "Keep going..." while the drivers clapped and honked.

Although running was difficult at this point, I managed to alternate between a slow jog and a faster walk. His kindness and his words had strengthened me a little. I began to think that it might be possible to finish the marathon after all. Yes, I would have a very slow finishing time, but it would look a lot better than seeing DNF (Did Not Finish) on the results page.

On and on I struggled over the next few kilometres. Each step just seemed to get harder. There were a few runners ahead of me, but fewer behind. I started to see people who had finished the race walking back smiling and wearing their medals. Cars honked and the drivers told me to keep running. Run? I could hardly walk. My legs had turned from Jell-O to cement. Everything hurt. But mostly my pride. I was publicly falling apart and it was humiliating.

At 40 km's I saw my husband and son walking towards me. They'd heard from Chae that I was having a tough time and set out to find me. Upon seeing Roger, all the emotions came flooding back. I told him I wanted to quit. "It's over. I'm done. Go get the car, because no medal is worth this amount of suffering". My son, Ethan began to cry too and even offered to finish the race for me. My husband explained to him, that neither of them could do it for me,  but they could do it with me.

And that is exactly what they did. They walked beside me and encouraged me to keep putting one foot in front of the other when I so very desperately wanted to stop.

"Keep going..."

A few metres before the end, I turned the corner and at last saw the finish line. My husband and son stepped aside and let me cross the finish line alone. In that moment, everything became a blur. I remember hearing the announcer say my name. I remember someone placing the medal around my neck.  I remember feeling relief at finally being able to stop. But then, I heard cheering - really loud cheering. I wiped the tears away to see my marathon group in front of me. All of them. Every single member of my group had waited for me. Some of them had finished their own race two and a half hours before me, but they heard that I was struggling and waited to see me finish. They were happy for me they celebrated with me but mostly, they were proud of me. What I saw as weakness, they saw as strength. I was speechless.

I'm a marathoner!

But perhaps the most touching part of my marathon story took place afterwards. Two weeks later I found a message in my Facebook inbox that I'd somehow missed. It simply said this:-

Hello Elaine,

You don't know me, but I saw you running the Toronto Marathon yesterday. I noted your bib number, and then searched  for your name and was happy to see that you finished the race.

When I saw you, you were crying and having a hard time. I didn't think you would make it, but I'm glad that you did.  I'm not a runner myself, but I've decided to run a marathon.

Thank you for inspiring me.

Michael 

Wait, what???

He was inspired by me? How? Why? I was struggling. I was crying. I was walking!

Then I realized he wasn't inspired by the fact I struggled, he was inspired because I didn't quit.

Again, speechless.

I feel that running a marathon is a lot like living with a vestibular disorder. It isn't a one time event that you train for, complete and then receive a medal and a t-shirt. No, a vestibular marathon is something that you live daily. And it's hard. Very hard. For each one of us it's an individual journey and for some of us it is much harder than others. People can have these debilitating symptoms for years. Even decades. It is both physically and emotionally draining. And sadly with a vestibular marathon, there is no finish line.

If you find yourself struggling in your vestibular marathon today, it is my hope that there is someone who will give you words of encouragement, like the police officer did for me. I hope that during your most challenging moments, there will be someone who can come alongside you and walk with you, like my husband and son did for me. Finally, I hope that you will find yourself surrounded by a group of fellow vestibular warriors, that know exactly what you're going through, and can celebrate both the struggles and the victories with you.

So, although I've been discouraged about my writing lately, I probably won't quit. Why? Because there might be someone reading this right now, who sees that I'm struggling and is inspired to keep going. 

And since every marathoner is awarded a medal, here is one for you. Congratulations on surviving another day of your vestibular marathon.

Living with permanent?

Chances are if  you have children (or a pet), they've done some sort of damage in your home at sometime that is permanent or least long lasting. Chances are you've also got some kind of product under the sink or in the garage to undo, cover up or remove the damage.

I can think of three occasions where my  two sons eldest son left damage in our home.

Once, when he was around two years old, he got into my glitter nail polish and left a trail on the wall, from the bathroom, through the living room, all the way to his bedroom. He was caught red-handed. Or perhaps I should say 'glitter handed'! We ended up repainting the rooms. Another time he wrote a message for me on our dry erase whiteboard. With a Sharpie. Yes, there was a dry erase marker for him to use, but he really wanted to get his point across. Wrote it in all caps too. We replaced the whiteboard and locked up the Sharpies!

But the most permanent damage has been to my dining room table.

Many years ago, both my boys were doing their homework in the kitchen and kept fighting with each other. So I decided to separate them. I sent my eldest into the dining room to finish his homework, thinking that since he was older, he would be more responsible. I was wrong.

Well, a week or so later, I was polishing my dining room table and I noticed something. My son showed his disdain for his homework by inscribing his 'feelings' deep into the grain of my table.

He was doing math at the time.

He also showed his disdain for his brother? Or perhaps me? Or both of us? A second inscription.

I'd like to think it says 'fork'!

I was furious.

I looked into having my table refinished, but because the damage is so deep, they said they would have to really thin out the wood and it couldn't be done. I also thought about replacing the table, but I didn't want to because I love this dining room set. So I've just had to learn to live with it.

 Now, at Christmas, Thanksgiving, Birthdays or when we have guests over, I have to get a little creative with my place settings and decorations so as to cover up his wood carving, but on the most part, I've learned learned to live with the damage.

In the same way, I'm learning to live with the permanent damage of my vestibular nerve caused my bout of vestibular neuritis in 2018. Sometimes I have to get a little bit creative and adjust my life according. Some days I'm actually successful at it. Other days, not so much.

 My sons piano teacher would never say "practice makes perfect" as the most common saying goes. She would instead say "practice makes permanent". Everyday I get to practice living with this disorder. And everyday that I practice, I get a little better at living with it.

And would you know, there are even some days that I polish my dining room table...and smile.