Braver

Things Shall Never Die

The pure, the bright,the beautiful,
That stirred our hearts in youth,
The impulses to wordless prayer,
The dreams of love and truth;
The longing after something's lost,
The spirit's yearning cry,
The striving after better hopes-
These things can never die.

The timid hand stretched forth to aid
A brother in his need,
A kindly word in grief's dark hour
That proves a friend indeed ;
The plea for mercy softly breathed,
When justice threatens nigh,
The sorrow of a contrite heart-
These things shall never die.

Let nothing pass for every hand
Must find some work to do ;
Lose not a chance to waken love-
Be firm,and just ,and true;
So shall a light that cannot fade
Beam on thee from on high.
And angel voices say to thee—-
These things shall never die.

Lyrics by Charles Dickens,
Music by Lee Dengler

Me and Hunter at his conducting debut.

For the first time since my own performances at my high school, I went back last week to see a concert. Hunter, who is part of several choral groups and is now a senior (*gulp*), made his choral conducting debut to the gorgeous piece Things Shall Never Die. I felt like a proud big sister watching him! I also learned that everything at the high school looks exactly. the. same. Just older and more worn. And they serve the same red punch after the concert as they always did when I was in school. 

Besides weighing the benefits of going on an outing with the physical consequences I will pay afterwards, one of my biggest 'blocks' when it comes to going out is my need for the big reclining chair. Using the wheelchair has become increasingly easier and freeing, but I'm not quite there yet with the reclining chair. I hate making a scene or standing out or looking funny.

But, I really, really, really wanted to see Hunter sing and conduct.

Me, Miss Alexandra and her new rainbow rubber bands on her braces. :)

In advance of the concert, Scott contacted the choral director regarding my needs. My follow-up email received a warm reception from the director, an eagerness to accommodate my needs and a warm welcome back to the school for a concert. Hunter, Scott and the choral director arranged everything in advance, including bringing my reclining chair to the auditorium and setting it up.

When Mom and I arrived at the high school, Hunter immediately met us at the entrance all dressed in his tux (isn't he handsome? :)). Hunter said: "Let me show you to your seats!" and graciously led us to our special spot, where we were also immediately met by the choral director who made sure we were comfortable and could see well and said: "We're so glad to have you back!"

Now, I did not attend a small high school. The school is over 2000 students large. And when I would have expected the performers and director to be back in the practice room warming up, they were instead in the auditorium hanging out. And took the time to welcome us.

The crew: Mom, Scott, Hunter, Anne, Alexandra, Me.

Scott, Anne, Hunter and Alexandra (I will call them The T Family) have been instrumental in my increasing acceptance of my disability. They absolutely do not care that I am different. They just show joy in being able to spend time with me or see me. When Hunter greeted me at the concert, Alexandra came over excitedly to hug me, and Scott and Anne came over to chat, all I could think was: Was I that brave as a self-conscious teenager? Was I as accepting as Hunter and Alexandra? Would I be as comfortable and accommodating as Scott and Anne had I not become sick? 

When I first met them in 2005, I was at my absolute sickest. Because we are neighbors and The T Family is always willing to help out with things, they've come to our house and seen me looking and feeling horrible. Anne has sat by my bed while I've been bedridden and receiving IV fluids. Alexandra has cuddled with me. Scott has visited me in the ER. Hunter has always come over for a Halloween visit. After my port surgery, I desperately wanted to leave the four walls of our house and went over to their house in my PJs.

In general, I'm a great actress, and very few people ever see how I'm really feeling. Most people never see what I look like on my worst days. It is a rare and humbling gift to find people who are so immediately accepting and comfortable with illness and disability. 

The T Family, and all of the others who have encouraged me to go out no matter what it takes, have made me braver. While I was anxious about attending the concert, it was hard to find much room for anxiety when I was surrounded by so much support, assistance, and acceptance. It was also great to be welcomed back so warmly to my alma mater, which I love dearly and have many wonderful memories of my time in the music program. 

Going to this concert made me realize that instead of focusing on the idea that I might be 'making a scene' or 'causing a hassle', I need to change my focus. Instead of being worried that the high school students might find my situation awkward, I need to remind myself that by being brave enough to go to the concert shows them that it's better to be out in the world than to stay home and miss out. 

I first used my reclining chair to see Wynton Marsalis in concert. And if you are a regular reader of my blog, you know that was a huge whopping amazing success, thanks to Lisa! For some reason

going back to my high school required some extra courage.

I've been so incredibly fortunate to have people like Lisa (who helps with the big fancy concerts I've been to) and The T Family whose number one priority is that I get to enjoy the arts and an outing. They also take great joy in my success. 

I really hope to make it to some more of Hunter's concerts before he graduates this Spring, as well as to some of Miss A's concerts (she is quite the artist herself!). The price for an outing is a big one--I didn't sleep the night after Hunter's concert and was really wiped for the next couple of days--but I am braver for it.

Bravo to Hunter for his fantastic performance and thank you to The T Family for your lessons in acceptance.

Blessings,

Emily