Monday, June 27, 2011

Will you?

One of the things I miss now that I've decided to walk up for Communion at church (they would bring it to me and anyone else) is usually the second hymn sung during Communion.

But I do love more that I walk up to Communion and then back to my seat (although it's slow) and am not exhausted (not being tired is the whole key to things) when I get back - actually when I return to my seat my legs are deciding they are "ready to go," but they have to wait until the end of the service. But the hymns... this Sunday it was:

Will you come and follow me if I but call your name?
Will you go where you don't know and never be the same?
Will you let my love be shown,
will you let my name be known,
will you let my love be grown in you and you in me?

I love the words and I love the flowing melody - it's like gentle waves.


Take the road not taken and be amazed.

Go out and do good works.

Let the Three in One in.

The first line seems to be following me so much:
Will you come and follow me if I but call your name?

Be still. Listen. It's there...


Saturday, June 25, 2011

Why church?

People go to church for any number of reasons. A great number of people go to church, I think, to "check the box." They "get it out of the way." They may go there to be seen. I've seen versions of going to church on resumes, sometimes as if to say "yes, I fulfill social responsibilities and am a good person." They seem to be checking some "good person" box. Not always. But...

These are not the reasons I go to church.

I definitely go to church for community. I believe we are all community there. We share many things.

But I also go searching for answers, or trying to listen because maybe I'm being told something. And it's a bit interesting because everyone might be told something a bit different in their mind, even though it's the same service, and we are all there as community.

Last Saturday, I had a vivid, strange dream. In the dream I showed up to be assisting minister. But someone else was there as assisting minister. I was treated and viewed as some kind of alien, and told I would never be assisting minister or lector again. And then... I woke up. The dream was so vivid that I had to think, did that really happen? I went to church and was the assisting minister, but I was distracted. Why the dream? I've now figured it out. It's my mind's way of taking a completely different part of my life and placing it out of context into some other part of my life.

But finding answers... where are they? Last week, the second lesson contained the words "agree with one another, live in peace; and the God of love and peace will be with you." Seriously?!! I mean, I know some people who went to church last Sunday and heard the same thing. But the thing is, maybe the God of love and peace is with them somehow, but they are not living in peace." I bet they aren't aware of this either, and I bet they didn't spend the time I did contemplating how I could live in peace right now.

Then the Gospel ends with "And remember, I am with you always, to the end of age." I got that. Check! I know Jesus is with me. Definitely - I know that. But right now I need some kind of roadmap or decision-making tree as nothing makes sense. Who to trust - what to do - what road to take - when - where - why? I think, right then, I wanted to be alone, not up front as assisting minister... just for a moment.

Near the beginning we said
"Guard us from all evil."

Then there were the hymns,
"Leaning, leaning on the everlasting arms."
I am leaning. Something is holding me up.

"Softly and tenderly Jesus is calling, calling for you and for me...
Why should we tarry when Jesus is pleading, pleading for you and for me? Why should we linger and heed not his mercies, mercies for you and for me?
Oh, for the wonderful love he has promised, promised for you and for me."
Jesus is right here, always, holding, even as I struggle to find a roadmap. He holds. Even if I ignore, he is still holding. That is remarkable. As I flounder, he is there. As I am hurt, he is there. As I cannot believe the hurt, he is there, calling, pleading, and loving.

And so it is appropriate to end the service with these words of song:
"This is my story, this is my song, praising my Savior all the day long."

At the end of the floundering and the hurt, I think I'll find my way down a new road. And Jesus will still be there, holding me.


Friday, June 17, 2011

Sit there.

It's sometimes really funny to look back on something.

"OK, Beth. Just sit there."

"Right...... there......... (on that seat thing) ???"

Imagine a narrow seat that becomes one of those adaptive exam tables. Or just imagine a chair, with a flat seat and no arm rests, just sitting in the middle of the room. That's where I was told to sit.

I froze a bit. Wait. There - that seat - no arm rests - no curvature to help with balance - just in case I didn't "stick" the landing. Ummmm...

I had already walked up to the doctor's office. There were 2 sets of elevators and a long hallway. I was strong enough to do that. Amazingly, I wasn't that tired. But this seat...

"Don't worry about it. You don't have to. It's fine." That was the nurse.

No, see now that those words were spoken, I most definitely had to.

And so... (drum roll?) ... I sat. And that was that. I stuck the landing.

I have been sticking landings when I sit, but there's always something there, just in case.

So there I was.

"You can sit back now."

Oh no, now that I have stuck this landing and am sitting here straight, I'm not going to lean back and relax.

The appointment went on - perhaps the best parts are not talking about my MS, or laughing about something, or talking about the good things that are happening where I am showing MS that I have found competition for it - the competition is winning. MS is losing.

"Hold your arms up like this." That's the doctor. What? Now I have to take my hands off my lap and let go? Strangely, I let go. Not perfect, but I did let go, on the "sit there" seat.

My daughter and I left the appointment. We took the elevators down. We went to the lab, back to the other elevators, and down to the parking. At one point I thought I should sit and have my daughter pull me.

No. If I could stick that landing, I could keep walking.

I made it to the car.

And now I know, I can sit...


Saturday, June 11, 2011

Reflections on a year

It's amazing to me - a year without MS attacks. When I have an MS attack, my legs collapse - I hit the floor - I'm totally exhausted. When I go on steroids I get a rush - then I get angry - it's a roller coaster ride. But now it's been a year without this. And a year without the roller coaster ride of steroids - I am grateful. It's because I'm on Ampyra - nothing else makes sense. I used to have attacks every 5 to 6 months. Given the stress I've had at different points during the last year, I should have had several attacks. I've had "off" days.

And what else? I haven't been really sick for a year. My husband got a horrendous cold. I got a very small version of it where I felt like sneezing and perhaps sneezed a few more times than I usually would. I did recently get laryngitis and a small "bug" with it, but it didn't last as long as it did for others.

I haven't had attacks, and I have improved. What is still hard for me to see things that are easy for others, but are still difficult or impossible for me, even though I have come so far. It's "functional" stuff - opening doors with ease, without a walker getting in the way. I can sit straight, I can write with a regular pen, I can walk further and faster. Many things are not apparent to others - takes me about half the time to get ready in the morning. Heat still kills me; humidity is even worse - learned this when I visited Ohio recently.

So many people have helped me along this journey. People will say "you are walking faster" and I don't know whether they are saying it to make me feel good, or they really mean it. So I go time myself, and I am walking faster. Just this morning I was sure I had slowed, so I timed myself and I was a bit faster again.

My friends at work who have helped me kick up my legs while sitting (one of my exercises) and have added some leg massage with it have helped. They sometimes need to show me how far I have come. The same people raise the handles of my walker as I improve. It's a small few group of people, but they have helped the journey. I don't tend to name people in this blog, but they may read this and know who they are. Thank you!

I added physical therapy (PT) and was lucky to get an awesome PT. She knows I push myself and she will push me. Some days I show up for PT and I'm mentally exhausted. I just want to give in - throw in the towel. But she, the PT, doesn't let me. She doesn't let me off easy either - she pushes me. She shows me I am still doing well, that I am still getting better. She gives me motivation to keep working over the next week and often it's likely I'll get through the week, but return in the same mentally exhausted state, ready to throw in the towel on everything. She continues to push - she doesn't let me get away with throwing in the towel. When the gait machine is broken, I think I am off the hook, but she finds something else to challenge me, and it's never easy.

So, this past year - one of amazement. 21 years of MS is a lot to reverse. Significant progress made. Those who knew me as a runner would not think I look so good, but I look better. When I doubt, I go prove myself. I'll decide my legs aren't working, but then I almost talk to them - think of them working - and they work. Funny how this works - how many people wonder if their legs will work when they stand? If they did wonder, then they wouldn't have to concentrate on their legs when standing to force their mind to make the connection. My mom even comes with me to the track and has an apple for me, at the ready, as a midway snack through a lap. Yes, one stop now when I walk around the track - down from 6 stops in October. 60 minutes for that lap in October; 32 minutes in May.

I'm so lucky - I have supportive friends and family. Part of this is the church community - there are people there who have pulled me through some of the stress. Ampyra pulls me through, too. I'm ready to stop, but then I take a pill, I feel it kick in, and I am off.

And I'm still slow. People still have to wait for me. But I'm moving more. And I'm thankful to the people who wait, who don't tell me I should stop or that using my wheelchair might still be easier, and using my wheelchair would be faster. I'm thankful to the people who realize it's not about me taking things easier - it's about me pushing, and seeing how hard I can push.

Thanks be to God, for all the good of the past year, for being there through the incredible stress and frustration I have had to keep to myself (mostly, and I haven't wanted to let God into it either), and for being there while I push, push, push - others push - others complement. Thanks be to God. I am loved.


Sunday, June 5, 2011

The Golf Cart

Back at the Kenyon reunion, while extremely fun, I realized how difficult it was be to get around campus with a wheelchair. You don't realize where all the hills are when you walk; you don't realize how big the campus really is; you don't realize that shortcuts you always took as a student don't work the same way with a wheelchair. Enter the golf cart!

There was a slight mix-up when we arrived Thur night and we didn't get the cart until Fri morning. I should say Jenny, my roommate of 3 years, got the golf cart on Fri morning. Then she drove it. Fri night I wheeled to our room from the bookstore. Seemed easier than getting back in the car. Wrong. I remember it was easy to get from the bookstore past 2 dorms to the third. How far could that be? Well, Jenny had all our bags unloaded by the time we found our way. The next morning it seemed it would be easy to get to the dining hall - it must be all downhill since the previous night was all uphill. Wrong again. Half down; the other half up. I was so glad to get the golf cart!

You would also think with 3 rows of seats, there should be room to spare. No. Wheelchair in back; walker, Beth, and backpacks in the middle; Jenny and Lori up front. I held onto the wheelchair. To get in, we developed a system where Jenny would lift my left leg and I would somehow hurl myself onto the seat. And away we would go - soon we were singing the theme from Indiana Jones as we traveled by golf cart. It was humorous. In a strange way, these were the good times.

The golf cart liked to jump when going in reverse, so we would all hold on and wonder, just how much would it jump each time. And which roads could we take this thing on?

Through all the comedy, Jenny was amazing. She would load and unload things. Did I want the wheelchair, walker, or both? The weekend was complicated because I needed to walk, but then I also needed to wheel. And when I walk, I realize there are new obstacles called doors, or curbs, or strange grooves in the sidewalk. I guess I realized that when I'm home, I know more of where these things are. What amazes me is this great walking I have at home is challenged anywhere new. At home I know where to use my wheelchair and where to use my walker. Somewhere new, I need both. At home I think I even know which buildings are easier, and even which bathrooms work. Somewhere new, I have to figure it out - is a door too heavy? If there's one of those buttons to open a door, will the door stay open long enough. So for all the times Jenny loaded and unloaded everything, lifted my leg and hoped I made it - well, that's when you know you have a great friend.

We had to return the golf cart. That was a bit sad. I mean, we had so much fun! We got places. Life was good.


Thursday, June 2, 2011

Ain't Got Time to Die

This past weekend I went back to Kenyon College (which I love!) and got to be a part of the Chamber Singers reunion. It's acapella. Going back was a unique experience I loved. I was captured and didn't want to let go. I could feel the music become a part of me, my voice blending with those of about 90 others (including my daughter's!), a feeling of music at the very core of who I am. I have always loved music - it has always been at the core of who I am. But I haven't felt these feelings for so long. Music taken in, joined with others, and then shared with an audience of other alumni from Kenyon College, and people from the local community - it was incredible. In a moment, in so many moments...

Simple warm-ups from college - the favorite of hip-o (1), hip-o (2), hipohhhhhhh (1)... and variations... Ming-ee-ah ... ming a ming a ming a ming a ming... love those.

The concert - when it all came together for me. The most simple brilliance of using a music stand to hold music allowed me to concentrate on the music.

And the concert... (some of it)

Palestrina's Circut Cervus ... (so my soul longs for you oh God)

Erb's Shenandoah ... "Oh Shenandoah, I long to see you ... away, I'm bound away..."
(imagine women's parts)
so beautiful and gripping.

Farmer's Fair Phyllis
The (short) song is about a man searching for his lover. But I'll never forget during rehearsal, the 2 toddlers released, one boy and one girl - the boy chasing the girl. They never "fell a kissing" as in the song, but I laughed s hard I couldn't sing this during rehearsal. During the concert, I somehow pulled it together.

Ralph Vaughan Williams - Loch Lomond
2 soldiers are captured in battle. The enemy decides to let one go but the other will die. The high road is to heaven. The music sways; I am taken as if in the middle of a conversation...
Oh, ye'll tak' the high road, and I'll tak' the low road,
And I'll be in Scotland afore ye;
But me and my true love will never meet again
On the bonnie, bonnie banks o' Loch Lomond.

After I graduated, "Doc Locke" started teaching some songs from South Africa. I never understood the intrigue until I returned this time and learned them.
Together, as a choir, we sway...
Khumalo's "Bawo, Thixo Somandla" and "Umgwagwa"
Berteau's "Shilohini"
I get it now - you don't learn these pieces - you feel them - you bond with others and move together.

Spirituals are always near the end of each concert...
Deep River...
I want to cross over into campground.
where campground is heaven. And to begin this piece on the word "Deep," is done with the note F (ok, perfect pitch must be part of this for me) which has a certain swell to it that only that note can do... and I am gripped... closing in peace, crossing "over into campground."

But then we transition to "Ain't Got Time to Die." This is upbeat. A slave is doing all these things - ain't no time to die. "Workin for my Master" could have a double-meaning of working for a slave owner, but really it's working for God. "NOW GET OUTTA MY WAY! I'm praising my Jesus. Outta my way! I'm praising my Lord... Ain't got time to die." In a different setting, I would have waved my hands in the air. I'm engaged in this piece with incredible joy and intent - more than when I was a student - the song pulls my faith into me while simultaneously letting me sing it out.

And then we come back to Kenyon, where in Locke's "Height of This Hill" (poem by an alum) we learn, we keep learning, we find answers, answers, answers, as we go through life, but we find them from the hill upon which sits Kenyon. Later, "remember Beth, it's them, not you, is one of those answers I find."

And we end with tradition, and the Kokosing Farewell, where we sway like a river and recall that we will never forget Kenyon. Kokosing is the river running next to the hill where Kenyon sits. Watch the video (from 1:40). That's Doc Locke. He has everyone's attention. You can't see it, but he's making eye contact with everyone, individually. He may be smiling at them. It's unique - you just don't get this every day; in fact, I've only had it at Kenyon. And the song - always brings tears to my eyes.

Old Kenyon we are like Kokosing
Obedient to some strange spell
Which urges us from all reposing
Farewell old Kenyon, fare thee well.

And yet we are not like Kokosing
Which bareth not upon its swell
But foam of motion's own composing
Farewell old Kenyon, fare thee well.

But when we are far from Kokosing
we still shall hear a calling bell.
When round us evening shades are closing
Farewell old Kenyon, fare thee well.

And see a river like Kokosing
in meadows sweet with asphodell
where memories dwell dear past supposing
Farewell old Kenyon, fare thee well.