Day Twelve - Hope

 On the twelfth day of gratitude, I am grateful for hope.

I didn't always feel grateful or hopeful. I thought hope could only exist if I would one day make a full recovery. Recovery isn't an option for me. Permanent does indeed mean permanent.

So today, this is what I hope for :-

I hope for good days,

I hope that there are more good days than bad,

I hope to have less flare ups,

I hope that my bad days remain manageable,

I hope not to develop new symptoms,

I hope to eventually take no medication,

I hope to get better at being sick,

I hope to one day work again,

I hope to continue to write, encourage and inspire others on a similar vestibular journey,

I hope you all have a Merry Christmas,

I hope there will one day be a cure - maybe not for me, but for those who will walk behind me.

I believe you can be both chronically sick and happy. I know this because I am.

And I am abundantly grateful.

I hope you've enjoyed reading this. What are you hopeful for? 

Day Eleven - My Family

 On the eleventh day of gratitude, I am grateful for my family.

I believe the only thing more difficult than living with a vestibular disorder, is living with it alone.

Of all the days of this gratitude challenge, this post is by far the most difficult post to write. I just cannot seem to find the right words that will adequately describe how grateful I am for my family. I couldn't have got through these last few difficult years without their unconditional love, support, encouragement, prayers and strength. I simply could not. It doesn't feel as though we are separated by an ocean, because they take up such a large space within my heart.

They are my favourite people in the whole world, and I'm so glad I was born into my family. How lucky am I?

To my sons, thank your for lowering the bar and your expectations of me. Thank you also for stepping up and doing so much more these days, because I no longer can. I'm sure one day your future wives will thank me for this.

And to Roger, my husband - 32 years ago, you made a vow..."For better or for worse"... "In sickness and in health". Well, the past couple of years have truly flipped the balance and tested your commitment. There are now more worse days than better, and definately more sickness than health. Thank you from the bottom of my heart for keeping your promise.

I'm so very grateful. And I love you.

Day Ten - Faith

 On the tenth day of gratitude, I am grateful for my faith.

I think everyone needs something to believe in, whatever that something may be.

Love. Stars. Science. Religion. Gods. God.

Growing up, faith was an integral part of my family. I don't ever remember a time when I didn't believe in God. Over the years, there were times that when my faith waivered a little and sometimes there were even difficult questions about God, but ultimately I always believed.

That is until 2018, when I became chronically ill.

At first I accepted the condition and thought that in order to get better, I somehow just needed to pray harder. Then, I thought there might be some miraculous healing, like in biblical times. Unfortunately that didn't happen either. Eventually I received a permanent diagnosis. I was never going to get better. It was then that I became really angry and turned my back on God. How could God do that to me? And why? 

But here was the dilemma, I found it was much harder, at least for me, not to believe.

 So, with what little faith I had left, every time the vertigo spells came, and I was brought to my knees,  literally and figuratively - I  started to pray.  And through those weak, tearful, earnest and heartfelt prayers...I began to have a real sense of peace.

Peace in the midst of the storm.

Yes, I still have questions, but I've come to realize, there are some questions that will never be answered in this life.

 All I know is this - on my really tough days, when I'm so ill, spinning and dizzy and it feels like my whole world is falling apart. When everything that can be shaken, is shaken and everything that can be taken, is taken, I'm left holding on to the one thing that keeps me rooted, grounded and anchored.  I hold on to my faith.

And for that I am grateful.

(Psalm 56 vs 3....When I am afraid, I will trust in you...)

Day Nine - Confidence

On the ninth day of gratitude, I am grateful for confidence.

It took a lot of confidence for a private person like me, to step out into a public space and start my own Facebook page. I started with two poems and one blog post. I was really nervous

I was nervous because people may not like what I have to say. 

I was apprehensive that people may critisize, misunderstand or misinterpret what I have to say.

I was worried that people would compare what I was saying, to others.

It's true, there are lots of dizziness pages out there. Lot of people doing the same thing.

Paint Nite - the same, but different.

And there are many similarities. But if you look closely, there are also differences. Everyone's story is unique.

 

So many interpretations.

No one can tell my story with the same insight, experience and perspective in which I tell it.

Each one is unique.

 My style of writing isn't for everyone. Poetry isn't for everyone. Some like it, others don't. And I'm ok with that. Sometimes my posts will get quite a few likes and sometimes none at all. I'm ok with that too.

It is my hope that my journey will help someome on a similar journey. I'm happy that I found the confidence to step out of my comfort zone and share my stories with you.

And I'm grateful, that you take the time to listen.

Day Eight - 2020 Vision.

 On the eighth day of gratitude, I am grateful for 2020 vision.

Prior to the Covid 19 pandemic, the term 2020 vision related to the standard test by which your vision was measured from 20ft away.

Today, in the light of the pandemic, it can also mean the way that people now see what is now valuable, meaningful and important in life. The year 2020 has given us all some perspective.

2020 vision - looking at life in a new way.

Perspective changes things. And by looking at something differently, you can often see something completely different.

So, this year I made a conscious decision to look for the good things in my life as it relates to my vestibular disorder. When I did that, I actually started to see the good.

I adopted a new mindset.

I began to reframe the negative thoughts with more positive ones

I started to see myself as a strong person with some physical limitations.

I stopped focusing on the things I couldn't do, and started to see the many things I could do. Now the list of what I can do keeps growing. 

My diagnosis hasn't changed, neither has the prognosis. My symptoms haven't changed.What has changed is my attitude, my outlook and my perspective. And that has changed everything.

I am strong because I persevere, I endure and I don't give up.

2020 vision has allowed me to see the strength I already possessed, and for that, I am grateful

You. Are. Strong.

Day Seven - Empathy

 On the seventh day of gratitude, I am grateful for empathy.

Although I don't remember the actual date, I will never forget the day in July 2003 that I took a crash course in empathy. And boy was I ever schooled on that day!

When my boys were very young , we bought a second hand double stroller for them. The stroller was big, heavy and awkward to get on and off public transit, so I usually walked everywhere.

Elaine, Ethan and Elliot circa 2003.

One day I took the boys to the neighbourhood waterpark . I decided to take a 'shortcut' through a little subdivision. Well, that turned out to be a mistake. While it was technically a faster route, what I hadn't realized was that the roads and the sidewalks were still unfinished. Also, the sidewalks that were finished, had a really high curb. It was quite a struggle getting the stroller up and down, on and off the curb. The children didn't like the constant bumping. Neither did my arms. What a nightmare that was. Needless to say, after our trip to the park, I took the long way home.

But that's only half the story. 

Once I got back to our apartment building, there were two firetrucks outside. Someone had set off the fire alarm, so the fire department were there on a routine call. The trouble is, once the fire alarm is activated, all the elevators stop working too. Roger and I lived on the 27th floor.

Up on the 27th floor!

I abandoned the stroller at the bottom of the stairs, and started walking up to our apartment via the staircase, holding the two of them by the hand.  Both Elliot aged 3 and Ethan aged 18 months were happy to walk up the first few flights of stairs, but they quickly got tired and both 'insisted' on being carried. I half carried, half dragged my two sons, plus their diaper change bag and some groceries up the remaining 22 flights of stairs. By the time we got home, all three of us were crying.

I remember vividly, walking through the front door and thinking to myself...what if I were in a wheelchair? How would I have made it through the subdivision? How could I have made it up the stairs?

I found out later, that the service elevator still works during an emergency, and the building superintendant would probably have let me use it. But that's not the point. The point is - it took this challenging situation for me to be made aware of the plight of so many disabled people. Accessability.

Although this was only a minor inconvenience to me, I realized that a lot people with physical disabilities face this type of situation all the time. They receive very little sympathy, let alone empathy for the challenges they face. No one sees and no one cares - until they are personally impacted. Little did I know then, that I myself would be facing a  unique set of challenges with my own disability down the road. But unless you have x-ray vision, my disability cannot be seen, so it goes unnoticed.

This incident taught me a valuable lesson. One that I have never forgotten. My vestibular disorder has caused me to look a little deeper, beyond what the naked eye can see.

So I always try to show empathy and kindness to everyone,  whether they have an obvious physical disability or not. Because you never know what people are carrying underneath it all.

And when people show empathy to me, without knowing about my hidden disability, well, then I am truly grateful.

Has your vestibular disorder made you given you a little more empathy for others?

Day Six - Community

On the sixth day of gratitude, I am grateful for this online community.

Hey you - yes, you. I'm talking to you. The person who's reading this. Hi there.

I don't always get a chance to say it, but thanks for being here. This community means a lot to me.

Before I became a part of an online support group, I was alone.

My husband of 32 years tried hard to understand my disorder, but he didn't get it. My family tried really hard too, but how can you possibly understand something like this unless you've experienced it? I don't believe that you can.

But you can - because you know.

I struggled alone with my vestibular disorder for a long time until I found this community. And the connection was such turning point for me.

Suddenly I felt supported, encouraged, heard and understood. Suddenly I was not alone.

Day or night, I could reach out through my phone, and you were there. Across borders, continents and timezones, you were there. You answered my seemingly endless questions and were happy to share your knowledge, insight and expertise with suggestions, such as - "you might want to try this", or "you might want to avoid that". More than anything though, you made me feel normal again.

I'm not sure I could've made it to where I am without you, because this is hard.

Yes, there are times I still feel alone - but with this community,  I know we're alone together.

And I'm abundantly grateful.

Day Five - Sense Of Humour

 On the fifth day of gratitude - I am grateful for a sense of humour.

I used to have a good sense of humour. I laughed a lot. But my vestibular disorder changed all that.

I stopped laughing altogether when I first became ill. It's hard to laugh when you feel sick all the time. Sometimes it's hard to even smile.  For me, the year 2019 could be renamed 'The year I stopped laughing'. But what I didn't realize, was that I was also stopping my family from laughing too. I was miserable and I was making everyone around me miserable too. "If mama ain't happy, then..."

One night my husband and son were sharing a joke during dinner. It was actually pretty funny and I could tell they both wanted to laugh, but were scared of how I'd respond. I was feeling really ill, so I was having none of it. I shot them both a glance to let them know there would be no laughter at the dinner table today, when my son looked at me and quite rightly said... "Mom, I know you're not happy, but does that mean that we can never laugh again...?"

That hit me. Hard. I looked at them both trying to stop themselves from laughing, and then I started to laugh too. I mean really laugh. Just couldn't stop myself.  After all it was funny.

That's how I got my sense of humour back. I laughed at something funny.

Now, how funny I will find something, very much depends on how bad my symptoms are that day. Nothing is funny, when you're spinning or nauseous. But I do like to laugh - because life can be funny. And people can be funny. And situations can be funny. And jokes can be funny. And my vestibular disorder doesn't change that.

But mostly I like to laugh, because sometimes laughter is the best medicine.

So I am grateful to have my sense of humour - back!

 

Do you have any vestibular funnies you wish to share? Please share in the comments!

Day Four - Good Neighbours

 On the fourth day of gratitude, I am grateful for my neighbours.

My mom gave me a bit of advice when I first moved into my home in Richmond Hill, 14 years ago...

"Make every effort to stay on good terms with your neighbours, they're the ones closest to you when things go wrong..."

That's is so true.

My parents may only be a phone call away, but physically they are on another continent. And to get to them it takes 7 hours by plane, plus another 2 hours by car.

My best friend Anna Marie, moved to British Columbia on Dec 1st of this year.

And my closest friends are about 20 minutes away.

But my neighbours, well...

Rob and Miranda

Although they haven't lived on the street for too long,  I feel as though I've known them both forever. Miranda is so much fun. Bright, energetic with an enthusiasm for life, she's very generous and giving. We talk about everything and have long conversations over the fence. Rob is a big guy with an even bigger heart. He would give you the shirt off his back and will help you with anything. He's shovelled my driveway many times and it's altogether quite possible that he's mowed my lawn more times than I have.  I feel safe having Rob next door. He's totally fearless and definately the neighbour you run to in an apocalypse.

 And their BBQ chicken is the best chicken anywhere. Served hot from their backdoor to my front door!

 Their girls Abbi and Cassie have brought some much needed fun to our neighbourhood. They are adventurous and creative and have kept us all entertained, amused (and well fed) during the pandemic. 

Alan and Debbie

When a windstorm tore a hole into our roof two years ago, all the roofing contractors were fully booked for the entire week. I just happened to mention to Alan the extent of the damage and within about 5 minutes he showed up on my doorstep with his son Justin , some long ladders and his tools. It took the two of them a couple of hours to fix my roof and they probably saved me a couple of thousand dollars. Plus a whole lot of stress. The roof is still intact to this day.

Also, without a second thought, Alan got into his famous inflatable T-Rex suit and helped me raise awareness about vestibular disorders during VeDA's  Balance Awareness Week. Who does that? My neighbour does that!

Ken and Terri

Ken and Terri are THE hosts of THE best parties not just on our street, but in the whole neighbourhood. They are warm, generous and incredibly funny. They are also a whole lot of fun to be around. Their annual pool party is the highlight of the summer which features Ken's incredible band rocking well into the night. And on New Year's Eve - who needs Times Square? The best party is just few doors down on my own street. Good times!

Ken and Terri also just happen to be the owners of a giant pink flamingo inflatable, which they were kind enough to let me use for Balance Awareness Week on one of the hottest days of the summer. You know you've got cool neighbours if they own a giant pink flamingo!

Mark and Carolyn 

Mark is the probably the best handyman I've ever met. He'll generous with his help and advice and can pretty much build and repair anything. His attention to detail is reflected throughout their beautiful home - which, by the way, looks like it could be on a page in Better Homes and Gardens.

 And Carolyn...well she's more than just a neighbour, over the years, she's also become a very good friend. She's not only talked me down a few times when my boys are driving me crazy but she's also cheered me up.  She'll drop what she's doing and be over in a heartbeat to lend a hand. But what I love the most about her, is her positivity. She has a great outlook. Seeing life the way she does has helped me feel a lot more positive in terms of my own life this year. I just love her. 

....they are the ones closest to you, when things go wrong..."

These are my neighbours. The closest people to me in an emergency - vestibular or otherwise. These are the people who can get there before 911 does. 

I consider myself very fortunate to have these people around me. I don't only have good neighbours, I have great neighbours.

 And I am grateful.