Standing INSIDE The Fire: Garth Brooks Concert

Too many times we stand aside

And let the waters slip away

'Til what we put off 'til tomorrow

Has now become today

So don't you sit upon the shoreline

And say you're satisfied

Choose to chance the rapids

And dare to dance the tide...yes

I will sail my vessel

'Til the river runs dry

Like a bird upon the wind

These waters are my sky

I'll never reach my destination

If I never try

So I will sail my vessel

'Til the river runs dry

--Garth Brooks, The River--

Our View

Going to big concerts has never been something I've done a lot of in my lifetime--even before I got sick. I've seen Chicago, Phil Collins, Billy Joel and REM. Yup. I think that's it. Because well, ya know, Phil Collins was pretty cool in 1994. 

The Stage

The last big concert I attended was at the same location as this most recent concert--Billy Joel in 1998 shortly after I got sick. I remember the struggle it took to make it through that concert. It was before I had a diagnosis or any idea what was wrong with me.

Here's Garth!

While we were at the beach, it was announced that The Garth Brooks World Tour with Trisha Yearwood would be making a stop in our town.

All I could think was: could I make it to this concert? Is this a possibility? Can I sit up long enough to go to a concert now? Can I handle the crowds, the lights, the noise level? 

I asked myself these questions because seeing Garth Brooks in concert is at the top of Jeannine's bucket list. 

After talking to Lisa at the venue we have attended all of our concerts (Wynton, Audra McDonald, etc.) about the logistics of attending, I decided to give it a go. 

The logistics ended up being a bit of an accessibility nightmare, but I'll save that for another post. Too bad Lisa doesn't work this venue, because she hung the moon.

Obligatory Selfie

I called Jeannine from the beach and asked her if she wanted to go. Of course she did. But she wasn't going to ask me or tell me about the concert because she didn't want me to feel pressured to do something I might not be up to. (Thank goodness Mom was reading our local newspaper while we were away).

And Another One

Jeannine went online right at 10 AM the day the tickets went on sale and after additional concerts were added, we got seats. Six sold out concerts! 

Garth Looked Pretty Teeny From Where We Were Seated

Jeannine has had the shittiest 2015 so far, so Mom and I were so excited to be able to treat her to this outing for her birthday.

To be able to accompany her on one of her bucket list items meant the world to me. 

Garth is not a 'bucket list' concert for me, but he puts on a great show and so does Trisha. 

I wanted to hear my three favorites: The Dance, The River and Standing Outside the Fire.

And I got to hear all of them. 

Trisha only sang three songs, which was a little disappointing because she is definitely one of my country favorites as well.

He's A Great Performer

There's this love that is burning

Deep in my soul

Constantly yearning to get out of control

Wanting to fly higher and higher

I can't abide

Standing outside the fire

Standing outside the fire

Standing outside the fire

Life is not tried, it is merely survived

If you're standing outside the fire

Playing All Of The Favorites

Even before I got sick, I spent so much of my life coloring inside the lines. But afterwards, I found that so much of life was literally merely surviving. Surviving was often all that I could manage. Joy is hard to come by in the midst of so much suffering.

Now I just want to grab life by the reigns. I'm jumping into the fire, taking the risks that come with life, falling in love, branching out, trying new things.

It's all part of what Garth would call The Dance ("I could have missed the pain but I'd have had to miss the dance.") and The River.

Trisha!

I am SO glad I did this! It's another HUGE victory in what feels like a year full of victories.

Just a year ago, going out to dinner was a huge victory. Going to performances where Lisa works was still very hard. 

And now, here I am in April 2015 doing what seems unimaginable to someone with an overactive sympathetic nervous system.

Bright Lights! Big Crowds! Flashing Lights! Lots of NOISE! Sitting Up for Several Hours! Singing Along during the Concert! Clapping My Hands Over my Head! Gone From 6:00-10:30!

(My PT was particularly excited about the hand clapping over my head. :))

Ready For Garth!

Was I completely exhausted the next day? Yes. Did I stay in my PJs and barely move? Yes. 

Did I have an Autonomic Storm that left me up all night sick with forceful heartbeats, ringing ears, tremulousness, shakes and chills, agitation, anxiety, PVCs, gastroparesis, nausea and neck pain? 

NO!

I DID NOT.

I took a small amount of extra medication to sleep, but otherwise my ANS was CALM.

This quieter sympathetic nervous system and being able to sleep after a big event is the biggest reason I can now engage in more activities, be in larger groups of people, and go to events with more noise, lights or crowds. 

The biggest contributor to the quieter ANS is definitely the mestinon, but it's also a culmination of 17 years of hard work tweaking of medications plus incorporating other therapies.

Bucket List Time

Was one day of recuperation worth it for the joy in my best friend's eyes as she watched the concert? Absolutely.

I'll never forget that we got to check something off of Jeannine's bucket list Together. This time, I got to be by her side for something. She's always beside me.

Spoon Necklace + Garth Shirt

I have a little bit of buyer's remorse over spending the extra bucks to buy a shirt, but it's going down as one of the most comfy shirts ever. And it's going to be a reminder of all of the changes happening in my life. It is a reminder of this new life, of this body that is healing, of this friendship that has sustained me, of the courage to continue to Dance, travel The River, and Stand INSIDE the Fire.

Hearing Standing Outside the Fire makes me want to hop back in time and dance with my Connor House Girls (my eating house at Davidson) in one big circle as we dipped our feet into the "fire" as we danced.

In fact, I think I just may turn it on and dance to it myself. Just because I can DANCE again. I am dancing again--body and soul.

Blessings,

Emily

Jeannine: Caregiver of the Year!

Jeannine With Her Mom, Lee

Jeannine and I are two peas in a pod while also often being polar opposites. One thing that is vastly different about us is that she hates to be the center of attention, and I don't mind it one bit.

So, I have taken it upon myself to brag about her and shout from the rooftops how freaking awesome my best friend is. (Seriously, I had to ask permission to even write this post!)

The two of us had one heck of a week at the end of October. On Monday the 27th, I saw Dr. ANS and got my crazy good news.

The next day, Jeannine called me to tell me her crazy good news:

She received a Caregiver of the Year award!

She was nominated by her co-workers and the prize is, drum roll please...a five day cruise specifically for caregivers. The company that gives the award will provide 40 hours of in-home caregiving while she is away. Her flight is paid for. She gets spending money on the trip. And she gets to take her best friend from college with her.

Jeannine has shown such amazing grace in the face of tremendous suffering and burdens. Sometimes I fear I forget to step back enough to really take into account how remarkable she is. Because, most days, she is what she has always been to me: my best friend.

She isn't 'Caregiving Jeannine' or 'Fundraising Jeannine' or 'Volunteer Jeannine'. She's just the constant in my life, grounding me, reminding to believe in myself, coaching me through whatever emotional feelings I'm having, and chatting with me about gossip and TV shows. 

But while she's still managing to be an incredibly present best friend, she's also doing something that most 38 year olds have no idea she is doing. And she's doing it with incredible sacrifice, patience, grace, love, perseverance and resilience.

Jeannine and I rejoiced a lot that last week in October. One of the things Jeannine has taught me is that no matter how down and out one of us is, we must rejoice in the other person's joys. 

It was absolutely INCREDIBLE for the two of us to have so much joy between us all at the same time. We've waited a long time for it.

You so deserve this award, my sister by choice. 

Blessings,

Emily

39: Best Birthday Ever?

I know, I know. I've been talking about my birthday a lot. Maybe too much.

As I look back on it though, I have to say: it really was perhaps the best birthday I have ever had. Okay, no, Wynton didn't show up at my door, but otherwise this one tops all. This isn't about bragging about all the things I 'did', it's about how I felt.

I mean, perhaps it is a little sad that Wynton didn't show up...but you get the idea. :) He and Lisa showed up when I needed someone to show me how to find joy again, and that is what made those meetings so impactful on me.

Birthday Roses From Sarah, Bob, Lana and Buffy. :)

The top reason this birthday was so fantastic:

I spent the entire month of October celebrating LIFE. So many of my birthdays over the past few years have been tinged with sadness--sadness over not being married, over not having a child, over not being healthy, over not having things I so want in life.

This year, I felt fully able to celebrate all of my incredible blessings. My life feels full and vibrant. It feels full of love and stability in relationships. It feels full of family that loves me and friends who are amazing. It feels full with two puppies that I adore.

I didn't focus on what I 'don't have'. At all.

That, in and of itself, was a huge victory for me.

I just embraced the dancing light that I do have.

Gorgeous!

But then, the joys just kept piling on.

I dyed my hair blue and made my 39th birthday wish to raise $3900 for Dr. ANS. I felt energized, alive, passionate, and empowered by this impactful campaign. I felt humbled and overwhelmed by the donations and support that came flooding in. 

I Am Spoiled

On my birthday I took phone calls; I opened mail; I received gifts and flowers; I went OUT to dinner with Mom and Jeannine; I ordered a glass of wine for the first time in 17 years; I got carded at the restaurant. It was a wonderful day.

We went for a Fall drive.

We went out to brunch as a big family--Dad, Abbie, Mom, Jeannine and me. Together. All of us. Dad and Abbie spoiled me with special gifts. Abbie even dyed part of her hair blue too.

I got boots. The big tall kind that make me feel like a million bucks.

I savored every moment of being with those I love, hearing from those I love, and enjoying the activities I could engage in that I hadn't been able to do before. And wearing my boots with a dress.

I had a Celebration of Life party at the Spa with a group of fantastic women. One of my friends surprised me by secretly paying for my spa treatment. We had food and wine and pampering and laughter.

I felt alive.

And just as I thought the month was a wrap, that really, things couldn't get any better, we travelled to Hopkins and got the news that Dr. ANS expects me to get better and better and better.

Besides the love in my life, that is undeniably the best gift I could have received. 

The next day, my best friend won a caregiver of the year award. 

And scattered in between all of these big, huge moments I had a birthday lunch with Rebekah, a concert outing to see Brian Stokes Mitchell (and Lisa and Brianna, of course!),  a lunch out with Mom and Barbara, and dinner out on the Inner Harbor with Jess. My friend, Emily, adopted a baby on the same day I got my news from Hopkins. I'll never forget Kai's Gotcha Day!

Love the Vase and Butterflies Too!

I suppose it's no wonder November finds me feeling a little bit tired. October was a pretty busy month--physically and emotionally! But oh, so very worth it.

I'm starting to plant the seedlings now for how I most want to celebrate next year. How can I make it the most meaningful? Mom will be turning 70 and I will be turning 40, and I want us to make sure we take time to pause and celebrate LIFE again.

Thank you to everyone who made my birthday such a wonderful one in so many ways! 

I have my pile of cards ready to read. Over and over. Whenever I need a reminder of what really matters in this world.

Blessings,

Emily

A Blended Birthday Brunch

Our Blended Family

On Sunday, Dad and Abbie treated our whole blended family to brunch at a place that has a wonderful view of the mountains. 

The View

It's such an amazing testament to Dad, Mom and Abbie that we are able to be together--all of us--and truly enjoy each other's company. We care about each other, we watch out for each other, and we work very hard to make the best of having an adult child with illness in the family. Since Jeannine and I grew up together, she fits right in with both of my parents and with Abbie.

When Mom redid the basement, Abbie kept telling her how happy she was for Mom for doing this for herself. In these moments, I tear up because I know how very fortunate I am that all three of my parents are able to put aside their differences in order to have the best relationship with me.

Solidarity

Abbie surprised me with an awesome birthday gift: she dyed part of her hair blue too! She is supporting both breast cancer and dysautonomia this month. Such a meaningful gift! And she rocks the look too! 

Making My Same Wish!

We celebrated my birthday again--this time with Dad and Abbie singing--with the other half of the gluten-free pumpkin cake. 

All of this good food over the weekend may explain my post-birthday gastroparesis flare which has been a major bummer this week.

Perfect Day

We decided to take advantage of the perfect weather and scenery to snap a few pics of our wonderfully blended family.

Thank you Dad and Abbie for the birthday treat! I had such a special birthday this year!

Blessings,

Emily

Our Labor Day Weekend (Part 1): Seafood Extravaganza with Jeannine

Congratulations Jeannine!
Prosecco and Chambord

We had a wonderful, relaxing, and celebratory Labor Day weekend. 

On Friday afternoon, we drove to one of our favorite state parks with the puppies. It was a perfectly clear, sunny, not-too-warm day and we enjoyed StRolling the bog walk and the peacefulness of the lake. We have not been able to make it to this park since 2009 because it is a bit of a drive. It was special to go and to have more time to really enjoy the park and not feel as sick.

Isn't This Bottle Gorgeous?

On Saturday evening we celebrated JEANNINE and her new job. She's still working within the same company, but has a new position that she is very excited about and we are very proud of her.

Even The Top Has BLING On It!

We enjoyed a Seafood Extravaganza (Jeannine's favorite treat) of shrimp, ratatouille, gluten-free pasta (if you can find RP's Pasta at a store near you, it is absolutely worth the splurge), salad, mixed berry pie and locally made frozen yogurt. 

I'm sad to think about the end of summer and the waning options for fresh local fruits and veggies. Our dinner was almost entirely locally sourced.

BFFs

At our 20th reunion, one of our signature drinks was called the Double Decade Delight--consisting of prosecco and chambord. We recreated that drink to celebrate Jeannine's new job. Yum! With the new meds I am on, I have been able to tolerate small amounts (very small) of alcohol which is lots of fun. It doesn't take much for me to feel the effects though, and the glass I drank was a bit much for me! :)

Celebrating--Ramona Quimby, Age 8 Style

One day on the phone, Jeannine said to me: "Someday when I have a little more money, I am going to do what Ramona did in Ramona Quimby, Age 8. I am going to buy a box of tissues and empty it just for the sake of emptying it, and I am going to squeeze out a whole tube of toothpaste and not worry about wasting it."

Emptying Her Box of Tissues

Well, I stored that little idea in my head and decided that we would each empty a box of tissues and a tube of toothpaste. 

She Loved It!

As you can tell, Jeannine found this all very therapeutic! :)

Gorgeous Dahlias from the Market

It doesn't take much to make us laugh and smile. We just enjoy being together talking and eating good food.

I really enjoy that I am well enough for us to entertain in small ways--and do small things like decorate the table with flowers and think of something fun and creative to celebrate (toothpaste and tissues!). 

Oftentimes, especially before this uptick in my health, just the trying to come up with an idea of something fun felt completely overwhelming and like an insurmountable task. 

Mom's Magnificent Mixed Berry Pie

We wish Jeannine much success in her new job. We wish her new challenges that she enjoys. We wish her a great team of people working alongside her. We wish her all the best. Always.

Blessings,

Emily