Loving, working

These days I'm back to work pretty full-time with the L'Arche Edmonton community, helping with our triennial accreditation process. I'm happy to be working -- I can't think of a better place to work. The policy-related typing and organizing I'm doing isn't exactly exciting and gives me eyestrain by the end of the day, but my colleagues are a lot of fun, and laughter drifts down the hallway from every direction. I love the place, and the people.

Plus, I have Thomas to keep me company -- my friend who makes it his business to know the location of everyone in the building, or alternately, where the people who are missing might be. If Thomas doesn't know where someone is, he sometimes makes something up that seems plausible to him, and sticks with his story until that someone shows up.

Thomas' dedication to his friends within and often beyond our Community Centre is one of the things about him that I really love. He's happiest, of course, when everyone he loves is present, and he gets a bit worried when people are sick or away for too long. Sometimes we have to phone people who are missing but in action elsewhere just to keep Thomas from getting too agitated. But these days, with his friends mostly present and accounted for, he's happy to just sit and drink his coffee at the table near my desk, and tell everyone when people are coming in or going out for the day.

Thomas can't quite figure out why I keep showing up every morning because he's used to me being very part-time. Today he asked, "You here tomorrow?"

"Yes, Thomas," I replied with a smile. It's nice to hang out with someone who loves everyone so much that he wants to know the timing of where they'll be morning, afternoon... and even tomorrow.

"I not grumpy t'day": thoughts on paying attention

My work-at-home life has shifted out of the house for the past two weeks as I've been filling in for L'Arche Edmonton's receptionist, who is away on vacation. I've really enjoyed my mornings in the office in spite of a few frustrations with technology breakdowns, mainly because I get to see my friends at work. There's no human interaction when I'm writing L'Arche history at my kitchen desk.

I also get to see my friend, Thomas, every day, and I've learned something from him again -- my L'Arche friends with intellectual disabilities often cause me to reflect on what's really important.

Last week I discovered that it's essential to notice when Thomas comes into the room, and to say hello, no matter what my computer screen is demanding of me. On Tuesday, I was fighting with an email program that refused to either send or receive what had to be critically important emails (not likely) and was completely focused on it when Thomas arrived. He walked into the room, sat down at the table not far from my desk, and waited for me to notice him, which, unfortunately, I didn't for quite some time. When I finally did look up and say hello, he said, "I not talking t'you," in his angry voice.

Nothing I could say or do made up for the fact that I hadn't greeted him sooner. He sat, arms crossed, glaring at me, and eventually, got up and walked out. When I mentioned this to someone else, she said, "Oh, just be sure to greet Thomas right away, or he gets grumpy."

On Wednesday, when Thomas arrived, I said hello to him and asked how he was as soon as he walked into my room. His immediate, happy response was, "I not grumpy t'day," and I said, "I'm so glad. I like to be with you when you're happy." He spent a good part of the morning at the table near my desk, offering commentary on the falling snow or the situation in the parking lot ("lots of cars"), or in companionable silence. He didn't require a lot of attention, but it seemed important to him that I acknowledge his presence occasionally.

My experience with Thomas has me thinking a lot about these gadgets and gizmos that are always demanding our notice -- computers, TVs, tablets, smart phones and possibly a half-dozen other things that I don't even know about. They compete with our attention for each other, and if we let them win the competition, basic human interaction and courtesy lose out. How could a broken email program ever be more important than Thomas?

And yet everywhere we look there are people sitting together in different places, lost in their separate devices. Not that the devices are always an issue -- it's the lost-ness that is. As a technological society, we've developed the tendency to think that the business on those devices is terribly important. But it's essential -- and only human -- to be aware of those around us and their needs for our attention and care. When our devices start to suck us into unawareness of each other, it must be time to remind ourselves of our true priorities and turn them off.

It might just mean the difference between a "grumpy" or a "good day" for someone we love.

Simple Christmas idea #4 -- Turn off the TV

Removing distraction...

I've moodled this idea before, but it seems to have even more significance for the Christmas season somehow. When I was growing up, my sisters and I decided we would give up TV for Advent one year. Not veging in front of the boob-tube gave us a lot more time to prepare homemade Christmas gifts, curl up and read, practice Christmas carols on the piano or guitar, hang out with friends and each other, and a lot of other things that made us happier than any Christmas TV programming could.

When it comes to the holidays, the fact is that people connect better without background noise, or top news story interruptions. Giving up the TV might seem difficult during Christmas special season, but time to do special things with the people you love is always worth more, isn't it? Heck, it might even be worth turning off the cell phone, at least on Christmas Day. Or longer, if you dare!!

***

Here's a little something that's too good not to share. At L'Arche last Monday, I told my core member friend Thomas that we got a new car on the weekend. (After becoming a single car family we soon realized that we need one that will be able to make it through back alley snowbanks in the winter time and pull our trailer in the summer, so we opted for a Hyundai Santa Fe. Our smaller, shorter car is up for sale.) Nothing excites Thomas like a new car. He went straight to the window to look for it, and was a little disappointed when I told him that my husband took it to work.

On Tuesday, Thomas asked me about my new car again, and I told him my sad story. The fellow who parks beside Lee somehow neglected to notice the slightly larger new vehicle beside his usual parking spot, and managed to scrape the paint off the rear corner of it on the first day. 

Thomas was alarmed. "You sad?" he asked, sitting down beside me. 

"Yes, Thomas, I'm a bit sad," I admitted. 

He leaned in closer. "You wanna talk about it?" he asked. "You can talk to me."

He was ready for me to cry on his shoulder. I was so touched, I offered him a cookie from my secret stash. 

"You're nice to me," he said, happily munching.

"You're nice to me, too," I smiled.

Today is the International Day of Persons with Disabilities, and I'm celebrating Thomas and all my friends with disabilities!

The beauty of L'Arche, 40 years later

This weekend, on Saturday, our L'Arche community here in Edmonton is celebrating its 40th anniversary. Just eight years after the beginnings of the first home of L'Arche in Trosly, France, a couple in Sherwood Park bought a duplex in Sherwood Park, christened it Shalom House, and invited four assistants and one core member with developmental disabilities to make it their home. 40 years later, there are six homes and a Day Program for our community, which includes more than 20 core members, and assistants from across the globe.

Now that I think about it, I grew up with L'Arche. When my family arrived in Edmonton in 1974, we met some of the first community members at our church. I witnessed the assistants and the core members going shopping together, participating in parish picnics, and especially, enjoying music at mass by dancing in the pews. They always seemed to be happy!

During my university years, I worked at group homes run by Resources for Dependently Handicapped (RDH). It was while I was there that I learned about the beauty of L'Arche. One of the fellows I worked with had been an assistant at L'Arche, and he pointed out the difference between institutional group homes modelled on L'Arche, and the real thing; the difference between L'Arche assistants who share life with core members, and group home staff who work shifts with clients. That's when I decided that I wanted to work for L'Arche.

Of course, life took me in other directions -- until three years ago, when my friend who is now the L'Arche Community Leader asked if I would mind helping her out part-time with filing, typing, and whatever other odd jobs she might need done. The job bonuses are plenty -- sharing a little bit of my life with the community, working with a wonderful admin team, kibbitzing with the core members who come to the community centre for our Day Program, and feeling like I've found another home.

Yesterday, I was at the other Maria's desk making a phone call (there are two of us Marias sharing the same office) when Thomas came into the room.

"You taking Maria's job?" he asked. I nodded, in the middle of ordering anniversary cake. "Then I take your job," he said, gleefully settling into my chair.

I shook my finger at him and finished my call, then went over to shoo him away from my desk.

"Unh-uh, my job now," he teased.

"Okay," I said. "You work hard. I'm going to get a cup of tea."

I returned four minutes later, and he was still sitting there, smiling like the Cheshire cat. "My job now," he said again.

"Okay, Thomas, then I'll have to sit on your knee to get my computer work done."

He didn't budge, so I half-sat on his knee, and said, "Owww, Thomas, you're a hard chair. Too lumpy!"

He laughed, but didn't move until I told him that I had a real job for him, and got him to do a little bit of "decorating work" for the anniversary celebration.

The thing about L'Arche, its real beauty, is in the relationships between community members. In the early days of L'Arche Edmonton, the founders took the view that they had to save people with developmental disabilities from the misery of institutional life. But over time, many of us involved with L'Arche have come to see that it's the people with disabilities who save the rest of us from thinking ourselves indispensable, from being self-centred, and from taking ourselves too seriously. They help us to realize that while we all have our burdens to carry, none of us need to be perfect, but all of us need to be loved. 

At L'Arche, we have much to celebrate! Happy 40th Anniversary, my dear friends!

Lunch at L'Arche

 Last week, my neighbour, Shelley, and I went to the L'Arche Friday Hot Lunch. Every Friday, the Day Program invites friends to come and share lunch, and Shelley was invited as guest and took me along with her. It had been a long time since I joined my friends in Day Program for lunch, as I don't usually work on Fridays.

Other times that I've attended, I've ended up sitting at table with friends both with and without disabilities, and the conversation is usually dominated by the latter. Conversation at hot lunch is usually quite lively, with plenty of good natured teasing going on... but on Friday, Lucy* invited me to sit at her table along with three others with disabilities. Lucy, Mariette, Leanne and Thomas didn't have much to say over their lasagna and Caesar salads, so I had lots of opportunity to sit back and observe all the things I wouldn't have noticed had I been engaged in lengthy conversation:

-- Darren, getting up and going to the fridge for his favourite condiment, ketchup, and Kana quietly putting it on his lasagna for him.

-- Thomas, suddenly getting angry about something. I tried to find out what was wrong, but he muttered, "Not talking to you." He got up and left the room muttering angrily, though I'm pretty sure that only our table saw his outburst...

-- Harry, being mischievous, and tucking a squished-up serviette down the back of Carmel's shirt... which of course, led to more napkin wars.

-- ... Leanne, being concerned about Thomas each time he showed up at the door and turned away again, still angry for reasons unknown...

-- Glen, in earnest conversation with another guest at another table, and later, gleefully victorious at arm-wrestling.

-- Alice, the Day Program coordinator, quietly making sure everyone had enough to eat.

... But the best part of the whole hour was when Leanne, our tiniest core member, decided to bring Thomas, our biggest core member, back to the table. Thomas was still looking rather disgruntled, but he had peeked around the doorway, and she waved to him and said, "Thomas, come sit." But Thomas was holding back, so she got up and marched over to him. Taking him by the hand, she talked him all the way back to our table and made him sit down. Then she gestured to his empty plate. "Hungry?" she asked. He nodded. She took his plate to the serving table and loaded it with another piece of lasagna and more salad, brought it back to him, and asked if he wanted more juice. He nodded again, and she went and refilled his glass.

Thomas forgot what he was angry about, and happily ate his meal. Tickle wars broke out on the other side of the room (Harry again) and soon spread to our table. Leanne and I tickled Thomas, and he tickled us... and when the meal was over, I found myself reflecting on the fact that I would have missed Leanne's tender care for Thomas had I gotten caught up in a table conversation. Leanne made our meal a celebration through her acceptance of Thomas, and her gentle way of coaxing him from loneliness to belonging.

On our way home from Hot Lunch, Shelley commented, "It's so easy to forget what's really important. But whenever I come to L'Arche, I remember."

Amen, sister.

*I use pseudonyms online for all my L'Arche friends.

"I missed you!"

Last week I set foot in the L'Arche Community Centre for the first time in August. When our community leader is away, as she has been for much of the summer, there's less for me to do, and I can do much of it from home. As I'm only a part-time administrative assistant, it's easy to feel disconnected from the community at times, especially since many things happen and faces often change when I'm not around.

That's why I was so delighted with Thomas' greeting last week. "You're back!" he said, coming over and giving me a completely spontaneous big bear hug for the first time in recorded history. "I missed you!"

Usually, I have to coax an admission like that from Thomas by asking leading questions, but not this time. I hadn't realized that I had been away long enough for him to actually note my absence. His welcome made all the difference to my day. Not skipping a beat, he proceeded to give me his daily report about where everyone was and what he had been doing.

We all need to feel loved and valued, even if our role in the lives of others is a small one. It seems to me, often, that our people with disabilities don't take presence for granted, but have a special gift when it comes to reminding us that we're all important to the community because we're loved, valued... and missed when we're absent.

Who have you missed over the summer? Have you told them you missed them?

I share chocolate with you

At my desk in our big classroom office at L'Arche yesterday, I looked up to see Thomas enter the room, clutching something to his chest like he didn't want anyone to see it. In his hands was a small box of chocolate almonds, the kind packaged for fundraisers, and Thomas was clearly waiting for me to notice.

"Hi, Thomas," I said. "What are you eating?"

"Chocolate. I'm not sharing," he announced.

"Oh, Thomas," I replied, "I thought we were friends. Don't I share my cookies with you sometimes?"

No reply. Thomas was ignoring me, busy eating his almonds. When he looked at me again, I said, "Don't friends share? I just want one."

He poured a few more into his mouth, and I couldn't help but grin. He was enjoying this.

"I love chocolate," I said, "especially from my friends."

No reply.

"I really love chocolate, and it's really nice when people share."

He went to the windows and looked out as though he was thinking really hard. Then he looked at me, poured one almond out of his box, and gave it to me. I thanked him, saying, "Now I know that we're really friends, Thomas, because you shared with me too."

"I share chocolate with you," Thomas said, a huge chocolate-toothed smile on his face.

"Thank you," I said, "it's delicious." As he headed for the door I said loudly, "I love chocolate, and I love Thomas."

He kept going like he didn't hear me, but he returned several times that morning, wearing a big grin, saying, "I share chocolate with you."

"Yes, you're my friend," I replied, thinking, I know, Thomas. I love you too.

It's nice to be missed

My dizziness just isn't quitting, so last week, when a doctor suggested I that I should rest, I took him seriously.

For four days.

I rested.

Well, sort of.

Resting can get pretty boring, believe you me. I read an entire book. I listened to the radio. I lay on my bed and snoozed a few times. I wrote a few emails and a few moodlings. I took a walk to a coffee shop with a neighbour (I still need exercise!), and she let me hold onto her for dear life. Finally, I got fed up with resting, because it didn't seem to be helping my dizziness.

So on Monday, I called my boss and asked if I could come to work on Tuesday. I suggested that I do like before, working in the morning and resting in the afternoon, and she said that if I listen to my body, she'd be okay with that. She had a few things for me to do, so I caught a ride with my dad, who was on his way to the curling rink anyway. (He's in much better shape than I am these days.)

I walked into the L'Arche Community Centre, saying hello to a few surprised colleagues, happy to see them again, and I settled at my desk. It wasn't long before Thomas made his rounds, checking, as he always does, on every one's status: who is present, who is absent, and when the absent ones can be expected. That's his favourite activity -- keeping tabs on his community, and keeping us all in the loop on every one's comings and goings.

I think he was actually surprised to see me. I was delighted to see him!

"You here today," he said.
"I am," I agreed.
"You sick?" he asked.
"Just dizzy," I told him. "Did you miss me?"
Usually when I ask that question, Thomas says, "No." But this time he actually smiled and said, "Yes."

Made my week, if not my year!

A home for Thomas

I've been telling Thomas stories here for a while, but on Monday at work, I was invited to write Thomas' story to explain what L'Arche has meant in the life of one of our community members. I've asked permission to share what I wrote here because we need true tales to warm our hearts in these cold winter days. Thomas and friends warm my heart every week; I'm so lucky!

A Home for Thomas

Thomas doesn’t talk about his childhood at all, but from what we can gather, it was not a happy time in his life. One of seven brothers, all of whom were born with varying degrees of Fetal Alcohol Syndrome, Thomas bounced from one foster home to the next until he was 15. He spent the next 31 years of his life in institutional settings, changing residences many times. His anger issues and violence made it nearly impossible for anyone to care for him very long, as he grew to be over six feet tall, and at one point reached a weight of over 300 lbs.

The instability of Thomas' existence brought out the worst in him, and he was very heavily medicated when an amazing older couple met him and recognized his potential. They felt that he could have a happier life in a more stable and loving environment, so they took him in for a time and lavished him with affection and attention, helping him to wean off his medication and become more active.

The couple knew that they wouldn’t always be able to look after Thomas, so they entered into dialogue with L’Arche Edmonton in the hopes that Thomas would be willing to join the community and the community would be able to welcome him. He was still very rough around the edges when he arrived at L’Arche, and was accompanied by reports from various sources in his past that said  “Thomas will never be able to function in a group.” But the couple who had looked after Thomas were insistent that he had much to contribute to L’Arche, and in the end, Thomas joined the community.

Thomas’ first few years with L’Arche were very difficult for everyone involved. His violent outbursts and anger issues made it hard for the other community members to connect with Thomas, and he with them. Over time, however, Thomas developed a friendship with a rather outspoken core member whom he respected, and whose opinion he valued. Jenny could say anything to Thomas, and he would listen. With her encouragement, his outbursts became more infrequent, and he developed many relationships. It was hard for him when someone would leave the community, but he gradually realized that even though people came and went from his life, there was a core of people who loved him and were committed to living in relationship with him.

Now that Thomas has found his home in L’Arche, he is a core member in every sense of the word. He lends the community the stability he once lacked in his life by connecting with everyone. He attends the L’Arche day program, where he proves past caregivers wrong on a daily basis by working well within the group. His hearty laugh can be heard throughout the building, and he knows the whereabouts of all the staff and core members: who is sick at home, and who is on a day off, whose car needs a wash, and whether someone will arrive later than usual.

In the past decade of his life, Thomas has progressed from a painful past to a joyful present and a promising future. Not only has he learned the value of real relationships with other people, but our L’Arche community has grown through Thomas’ call for us to be in relationship with him. Now that he has found a stable home in L’Arche, he has been able to connect with his family of origin in a meaningful way as well, spending time with his brothers now and then. Thomas’ journey, though difficult, has been one that has given life and joy to all of us in L’Arche who know him today.

A gift from Thomas

It has taken Thomas nearly a year to figure out my name and the fact that I'm a regular fixture around the L'Arche Edmonton offices. Of course, that's mostly my fault. I think I confused him early on by telling him that I was "being Carmel" for a few days while our office administrator was away. He seemed suspicious of me for a long time after that. It also took me a while to understand that when he said "Who?" rather loudly, he was asking my name as only Thomas does. No wonder it took him so long to remember my name -- I didn't realize he was trying to in his own way.

While I was running the stairs to set up a meeting yesterday, Thomas met me on the landing, clutching some precious papers. One was a very colourful picture of a haunted house. "Is that for me?" I asked, knowing very well that it was for his favourite person in the building, and that I am not that person. Thomas told me who it was for, and I praised it up and down, then asked him when he was going to make a lovely picture for me to hang up at home.

He looked at it for a moment, then he looked at me, and gingerly handed it over. I applauded his use of colour, and was about to hand it back to him, when he said, "No, it's for you, Memaria. See, I being nice to you."

Later I learned that Thomas had started out making a "present" for a brother he will be visiting soon, but changed his mind, thinking to give it to his favourite -- but he got sidetracked again. His picture now hangs on the wall in my dining room. How could it not?