The Christine Curse

Bug has had a few electric wheelchairs in his life.
When I met him he was using a burgundy coloured one. It was well used and the way Bug could operate it, I could tell it was really a part of him. Soon after meeting Bug I noticed a brand new sparkly blue wheelchair sitting in the hallway of his suite. I asked about it. Bug said it was new, but he didn't like it. He said he had trouble operating it. It was unfamiliar.
Bug told me about the wheelchair he had in high-school. It was a black and operated similarly to the wheelchairs I was familiar with.
Since Bug's hands don't work like the average person he couldn't use a joystick to operate it. So Bug uses the headrest to drive his chair. There's a control box bolted to the side within arm's reach that has a power switch, a button so he can put the chair in reverse and another device that can tilt his seat back. On the side is a button that controls the opening of his apartment door.
Bug told me that the black wheelchair he used in high-school became nicknamed Christine after the demonic Stephen King car. Bug had gone outside during a break between classes. Now the headrest on Christine kept popping off, so there was a broken drinking straw used to keep the headrest in place. When Bug got outside, the piece of straw slipped from it's place and the headrest got stuck to one side. Christine started doing doughnuts. Bug's chair kept going around and around and there was nothing he could do to stop Christine from spinning on the spot. That was the day she got her name.
Then Bug got a new chair sometime just before moving on his own. She was known as Christine II. It took time for this Christine and Bug to get used to each other. This Christine liked losing her footplate. Then one time Bug was outside heading out for a walk around. He misjudged where he was on the sidewalk and went partially onto the grass. This tipped Christine II causing her battery to shift and come disconnected. Bug was stranded outside half off the sidewalk in front of his building. Thankfully the building manager was in her office, saw Bug and came to his rescue.
Sometime after I came along Christine II was being checked out more and more by the service people that would come to Bug's home. Finally Bug got the diagnosis that Christine II needed to be retired. Her axle had become stripped and was no longer turning one of the tires as easily. This would get worse and if Bug kept using her, eventually her tire may come off.
There was still the brand new sparkly blue chair sitting quietly in Bug's hallway.
Bug really didn't like this chair. It was a bit fancier than Christine II, but fancier didn't mean better. I went to start sparkly blue for Bug to use and she wouldn't power up.
Oops, the battery was dead. Bug had neglected to tell me that she needed her battery charged regularly. Was it forgetfulness or sabotage?
So the sparkly blue chair was taken off to the wheelchair doctor. It took several trips before this new chair was to Bug's operational standard. The control box needed to be raised, the footplates tightened as they tended to fall off as well and the headrest cut down as Bug was catching himself on it.
It's been almost two years since Christine II was retired and sparkly blue has been in service. Bug is much more used to the latest chair, but still laments about how great Christine II was. Bug's wheelchair is probably the most intimate piece of machinery he could have. They need to develop a relationship with each other and Bug has to learn all the quirks associated with sparkly blue. Without the wheelchair, Bug's independence is severely limited.
Who knows what his next chair will be like, possibly a hoover wheelchair?

Until the next time...

Bed time

Bug and I used to sleep together when we first met.
I have a queen sized bed and Bug just has a single. When we were first dating I'd bring Bug for sleepovers all the time, once I got the key to his place.
As of late we haven't been able to share z's in the same bed.
I see our not being able to sleep together as a temporary thing. It's not important, but it would be nice to do that once and awhile, especially when we're traveling.
The issue is that my dear Bug has spasms in his sleep that jolt him awake. He's so concerned about my rest that he's worried these involuntary muscle contractions will keep me up as well. These spasms also exacerbate his acid-reflux and this in turn could cause Bug to gag. Not a fun time for him.
We did have one stressful experience while staying in Seattle a year or so ago.
We were traveling with my son as well. It's fun for the three of us to travel together, but it does add another level of responsibility to my trip, caring for both.
This one evening I got my son settled into bed and he was sawing logs pretty quickly. I got Bug into his pjs, he took his bedtime pill, nibbled on some crackers and we were settled in. Soon after the light turned off, I could sense Bug was not relaxing. Then without warning his right arm shot straight into the air. I actually couldn't tell what happened as it was dark in the room, but I rolled over and touched Bug, 'What's wrong?'
Bug told me he had a spasm. I felt his arm and it was rigid as a flag pole. He was concentrating on bringing it back down to his side. I touched his forehead and it was damp with sweat. It took well over a minute just to get his arm back down onto the bed covers.
'Are you OK?' I asked.
He said he was worried he wouldn't be able to sleep.
This panicked me somewhat as I needed to sleep. I was to be the focus of a public event in the morning and I needed my sleep. I rolled over and tried to concentrate on my breathing. Then out of nowhere wind started pumeling the house we were staying in. Great! This public event in the morning was outside and now a storm was coming in.
Bug was laying beside me stressing about his uncooperative body, this wind storm rattled the house and I needed to be rested for the morning.
As I was laying there feeling adrenline coarsing through my body, worrying about me. This voice in my head said, 'Everything would be fine, just take care of Bug. He needs you right now.'
I rolled toward him. I could feel the tension in his body and I gently carressed his forehead. I made small circle between his collarbones, under his throat. I repeated this on his stomach and then tenderly rubbed his perineum. I continued to carress these four points over and over again. I couldn't tell you for how long I repeated this rhythmic touch, because the next thing I knew sunlight was leaking through the slats of the blind near our bed. Both of us had relaxed from the repetative motions and fell alseep.
Plus the storm had moved on and the sun was out. It was a really beautiful day.
One last time after that Bug and I shared a bed at the men's garthering in Oregon. It was the time of our thwarted trip South when we turned around and just came home.
I do sleep at Bug's home, but I have a mattress I sleep on that's on the floor near his bed. Bug and I almost always sleep really well when I stay over. Bug loves having me sleep over. It changes up his bedtime routine and if he were to have any problems I'm right there to help out. We almost always sleep in later when I stay over.
I look forward to when Bug and I experiment with him sleeping over. I love having his warm body near me as I drift off to sleep, but I'll settle for the comfy mattress on the floor in the meantime.

Until the next time...

Bug's got the music in him

Music is a big part of Bug's life.
He downloads music onto his computer and then listens to it when he's bored of TV or he's done searching the internet for whatever. Some evenings I arrive at his apartment door and the muffled music and inaudible words of a familiar song greet me as I put the key in the lock. My opening the door startles Bug as he'd been right into the music and unable to hear me entering.
Steam and pop music fill the bathroom when Bug's having his soaking time in the tub. An old ghetto-blaster from his teenage years sits on a little table by the toilet, tuned to one of his favorite stations. Lots of times Bug will get an impromptu lip-sync performance from me as I'm soaping up all his body parts.
Bug's burned several CDs for each of the different road trips we've taken. He made his premier CD for our inaugural trip to Oregon for the men's gathering; this was the trip of our first 'I love you'. Since then my glove compartment has filled up with more and more discs created with the latest songs by top pop artists
Bug has his favorite songs and through him I've come to appreciate some singers that I wouldn't have given the time of day to. For example, Britney Spears. I thought she was only popular with teeny-bopper girls and tabloid headlines, but it seems she's attracted the gay disabled crowd as well.
As per the example above, Bug tends to be drawn to female singers as the majority of space on each disc is devoted to them: Pink, Katy Perry, Fergie, Kelly Clarkson and most definitely Lady Gaga. Got to have the Gaga.
I've looked over at Bug nestled in the passenger seat as we're careening down the I5 and his head is bobbing to the music and his lips moving to the lyrics. He gets right into the whole experience, the feelings and vibe of a song he really loves. When he catches me glancing over at him he stops immediately, gives me this sheepish grin, rolls his eyes to the roof the car and says 'What?'.
At Bug's brother's wedding last fall I hauled his skinny butt our of his wheelchair and got him moving with me on the dance floor. His Mom even took over and danced a slow song with her eldest boy. It's a hoot to drag Bug around the room, weaving between dancing couples. He laughs and his eyes come alive. Where at home he has a private interaction with his favorite songs, it must bring a different experience of them to him moving through space with me securely holding him.
I must be a bit more exhilarating when I slide the footplates of his wheelchair out of the way, wrap my arms around his torso and lift him to standing. I adjust my grasp around his ribcage, shift his weight and then... we're off!

Until the next time...

Thirteen years difference

There's almost thirteen years age difference between Bug and myself.
Lucky thirteen.
I was just beginning grade seven on a small farm near the Shuswap Lake when Bug was being born at Saint Paul's Hospital on Burrard Street. Four years later I had my driver's license, my first girlfriend and was acting in community theatre in Salmon Arm and Bug was- well- he was four. When I was sitting in the movie theatre watching Breakfast Club with my friends, Bug was five and home with his parents. A year later, in nineteen eighty-five, when I graduated from high school and went off to college, Bug was starting grade one. And when Bug was receiving his high school diploma, my son was soon going to have his first birthday.
Sometimes when I hear a favorite song on the radio I'll tell Bug how old he was when it first came out; on the rare occasion he wasn't even born yet. Or if we watch an old movie I'll do the math and figure out how old Bug was when I'd seen it in the movie theatre. He'll say, 'Why didn't you come and get me?' I'll joke and say 'Yeah, Hi Mr. and Mrs. Bug's Parents I've come to take your ten year old son to see the first sequel of the Back to the Future franchise (I was already living in Vancouver by this point)'. We have a good laugh at the image of me as a young adult taking this kid to a movie. It all looks and feels innocent, until we add the fact that we're now in a sexual relationship, then it gets kind of creepy.
I've had one boyfriend prior to Bug who was much younger than me, but for the most part I've dated older guys. It was not my intention to be in a relationship with a man over a decade younger than me. There's a beauty to Bug's youthfulness and I know that my past relationship experiences have helped him. I've done a lot of work on myself and have gone through much of the insecurity that can crop up in new relationships.
I'm Bug's first boyfriend and I have a responsibility as someone who's been around the block a couple times to take care, nurture, encourage and support Bug as he navigates through all the feelings that come up for him. I don't worry about our age difference, in fact I think it's helped us.
I was in my mid-twenties when I had my only long-term relationship with a man, it lasted five years. We were both working through our own shit. It was a very dark time for both of us and we really hurt each other, I dare say damaged each other. I'm so glad that Bug isn't my first boyfriend and that I'm not doing the basic work I did in my twenties of loving myself and then trying to help him. Yikes! The thought of that makes my brain ache.
We each bring gifts and strengths to this relationship. Bug is a pretty easy going guy. He's got a great sense of humor and has an ease about the way he conducts himself. He's a good balance for my extroverted, energetic, gotta-get-it-done attitude. He calms me and I energize him.
I don't know if it was luck that brought Bug and I together, besides the fact that technology had a big part in it (thank you internet!), but I know this is the relationship for me.
Lucky thirteen.

Until the next time...

Time for missing Bug

I'm going away in the morning by myself to Seattle for the weekend. I'm meeting my friend Pansy there and we're going to hang out till Sunday.
Bug really doesn't like it when I go away without him.
Actually, to be honest, there's a part of me that doesn't like it as well. I know that as his caregiver I need time for myself. Bug understands this as well, but still he doesn't like it. As his partner I also need time away. I need time to miss him. I need for that ache that settles in my chest near my heart when I haven't seen him for a couple of days. I need that excitement as I draw closer to his home after forty-eight hours or more of not seeing each other and anticipating his smile. Ah, that smile!
Bug often tells me how unfair it is that I'm able to plan a weekend away and then just go and do it. He laments how much he'd love to be able to do that, but it isn't easy. There really isn't anyone in his life who could take him away or who's even willing. His Mom and Dad are the only people that spring to mind and as much as Bug loves his parents, it just isn't the same as going away with a friend for a weekend in Seattle.
I down play my enthusiasm at going away. I've taken at least a week off each year that I've been Bug's caregiver. A week is an eternity to Bug and I know he loathes having me away for so long. It's pretty difficult for me as the days draw closer to my departure. We tend to bicker a bit more and there are lingering silences between us. His smile is limp as I say my final good-bye and the door closes behind me.
Bug's Mom is always encouraging me, gently, to take my days off. She's always reminding me of the time owed to me for breaks. I get really split. Yes I could use the time off, but I also love, love, love traveling with Bug. He's so easy to travel with and appreciates it more than anyone I know.
This puts me in that old proverbial rock and hard place. Going away is always clouded with just a tinge of guilt. Guilt at leaving Bug home, well cared for, but at home none-the-less.
I'm planning on being in Bug's life for a really long time and I know self-care is paramount if we're to have longevity in our relationship. I know that I need to stay true to my path, do what's important to me and some of these things don't include my partner. They probably wouldn't include any partner, disabled or able-bodied. It's just that now each decision I make for myself to get away has a counter effect on my boyfriend.
Even as I have my suitcase packed and I'll pack up my toothbrush tomorrow morning, I sit here not feeling totally enthused about going away. That tinge of guilt is resting near my heart, beating in time with each pulse... thump, thump- thump, thump- thump...

Until the next time...

Cartoon Fun

Bug loves his DVDs.
He had quite the collection of movies when I first met him. His assortment of movie titles ranged from si-fi to horror, lots of horror. Yes, Bug has a tendency toward the freaky and gory. He really enjoys action films too; car chases, fist fights, guns firing off uncountable amount of bullets and things blown to bits can get Bug squirming in his seat.
Bug's also been returning to his childhood. He adores the cartoons he grew up with. The list is too long to even count. One of the things Bug did to occupy himself when he first moved away from home was to take the shows he'd taped on VHS and convert them to DVD. The recopied quality was terrible, all fuzzy and grainy, but it kept these shows alive for Bug.
Since I've come along we've been able to add to his DVD collection with boxed sets and full series of some of his ultimate favorite shows. There's a company in the States that Bug had dealt with extensively online. Bug acquired one particular series about four adolescent turtles that kick bad-guy butt, however soon after owning the series, this online store promised a remastered version. Bug sends e-mail to them every couple of weeks to check in with the progress of this new and improved version. Following the adventures of Leonardo, Donatello, Raphael and Michelangelo had been something that Bug's done since the show came to life on TV screens big time in 1987. In the early two thousands, an updated version of the show hit airwaves which Bug watched, taped and converted to DVD. It's been over two decades that Bug's enjoyed, re-watched and re-watched and re-watched this series.
Every so often he'll find a series (that may have lasted a season or two) on Amazon for cheap and he'll get it. In two years his animated series collection has grown a lot. He's received several series as birthday and Christmas gifts and also just because gifts. I think those can be the funnest gifts, getting something in the middle of the year, far away from Christmas and far enough away from his birthday.
Bug's screen saver on his desk-top computer cycles through hundreds of pictures he's downloaded from the internet. Colourful images of the shows he owns and one's he's hoping to get scroll by in an endless stream. Bug has several screen-shots from Jackie Chan Adventures, a show he's been unable to buy as it hasn't been released in it's entirety yet. Definitely not being able to buy it, has increased Bug's interest in it.
Bug's aware that there are other ways to watch his favorite shows, Youtube, free online websites and now Netflix, but I think there is a comfort and pleasure in looking over at the shelves lined with the plastic DVD cases and seeing childhood memories all in a row.

Until the next time...

A memorable trip

I’ve told you about Bug’s favorite trip, but I haven’t written about what I feel has been the best trip we’ve taken together so far.

After the first month of hanging out with Bug I got on a plane and flew by myself to Atlanta. I was off to a gay men’s spiritual retreat called the Gay Spirit Visions Conference. The GSV came out of a grassroots movement in the late eighties where gay men in the south-eastern U.S. states came together to support each other through the beginning of the AIDS epidemic. The GSV had come to my consciousness through reading about it, particularly in Mark Thompson’s amazing book Gay Soul. I had read a couple of the biographies where the men talked about the GSV conference.

After my flight from Vancouver, I was greeted at the Atlanta airport by a new friend that I’d met at another unrelated event in Tennessee the previous Spring. My friend drove us across northern Georgia to North Carolina where we were off to a Unitarian retreat center nestled up in the Blue Ridge Mountains. We arrived under the shroud of darkness and fell into our twin beds to sleep until the sun woke us a few short hours later.

I had a wonderful four days filled with workshops, lectures and making new friends. Even though I’d only known Bug for a month or so, I was really conscious about how amazing it would be to bring him to this place and this group of men. All the cabins were accessible, the dining hall, there were slatted ramps running all over the land connecting the buildings to each other. Despite everything being built on a mountain, it was an ideal setting; I could see Bug being here.

As Bug’s and my one year anniversary approached, news started going out on the web about registering for the up-and-coming Gay Spirit Visions Conference. I asked Bug if he was interested in going. He said he was.

The organizers had set up an incentive program several years earlier to encourage young men to attend the conference. Men under thirty were eligible for a scholarship and a nominal travel bonus to attend the conference. Since Bug was twenty-nine and his thirtieth birthday was two days after the conference ended, we applied for and received one of these scholarships. Also when I put in that I was his caregiver and Bug needed me to travel with him, the generous men gave me a discount on my registration fee. This helped make the trip more affordable.

Bug and I drove to Seattle, as I had gotten really cheap tickets out of SeaTac. We stayed one night in the Quality Inn near the airport and with my car parked in a secured lot, it was still cheaper than flying from home.

We rented a car in Atlanta where we stayed one night in a hotel. The next morning we traveled northwest to the Mountain Retreat Center and arrived in the early afternoon. The conference technically began with dinner followed by a meet and greet and information session in the building next to the dining-hall connected by one of the many ramps .

Bug and I found our assigned cabin. Bug was a little chilled as it wasn’t terribly warm on the mountain. I tucked him, fully dressed under the covers of his bed while I unpacked the car. Since our cabin was only equipped with a shower and Bug had the love of the tub, the search to seek out a bathtub was on.

When I wheeled Bug over to the dining-hall for our first meal, we were a bit early and the hall wasn’t open. Some men were gathered on a deck jutting off from one end of the building. I introduced Bug to some of the familiar faces I recognized from the previous year. One man was crocheting these colourful skull-caps. He had a brown paper shopping bag full of his creations. He said they were free for the taking. Bug gave me a look, that he wanted one. I dug through the bag and tried a couple different ones on him. He settled on a black and white patterned cap. At dinner Bug and I was greeted by a room full of more familiar faces. Hugs were exchanged and all the men wanted to know who I’d brought with me. Many of the men were aware that Bug was coming as they had to OK his scholarship and these men were eager to meet him.

I think Bug was a little overwhelmed by all the attention, but he was gracious, smiled and said hello. He answered some of the questions put to him about how he liked the facility and how was our trip.

At the multi-purpose room once the president of the group outlined the agenda for the conference, all the chairs were quickly folded up and whisked away. Now was time for the greeting part of the evening. We did introductory exercises so that the men could interact with each other. One of the exercises was to look deeply into the eyes of the man standing before you. I tried to keep focused on myself, but I was really aware of Bug and wondering how he was handling this foreign intimate experience. There was a short line-up in front of Bug’s chair and one by one men kneeled before Bug and looked into those beautiful brown eyes. Bug had a big grin on his face, a reflex of being a little uncomfortable, but he stayed present with this exercise and gave his attention as best as he could to each of the strangers bent before him.

Later I had teary eyed men come and embrace me, thanking me for bringing Bug to the conference.

On evening there was a fashion/talent show. I was prepared to read a piece I’d written about Bug’s and my first meeting. There was a room in the multi-purpose building full of drag. I found this polka dotted top, pants and a hat with a polka-dotted band on it. I asked Bug if he wanted to dress up for the fashion show. He laughed and said why not.

It was a blast to get him dressed up, wheel him down the aisle and pull his chair up onto the stage for him to be witnessed in his crazy dotted getup. There were several outrageous outfits and the room was thunderous with applause, but I imagined it was mostly for my Bug.

One other night was a dance. The music was great, the vibe was high and everyone was there to have a good time. I yanked Bug out of his chair, pulling him to his feet and danced him around the floor several times. It was quite a workout for me and I was a slippery sweaty mess by the end of the evening. When Bug and I got back to Vancouver one of the fellows from the conference e-mailed me with a poem he’d written about Bug and me.

Prom Night (for Bug and Stitch)

There are as many ways to dance
as there are dancers.
Raising with arms, lifting with eyes,
smiling the beat into being,
the couple spins and pulses,
open and secret,
intimate, sacred.

Each move is sweet
with infinite possibility
and the slow, rich simmer
that men achieve
whenever their souls touch.

Everyone on the floor
sees them.

I was so proud of Bug and how he took an unfamiliar situation and stayed as present as he could with it.

Until the next time...

Our wee obsession

Bug and I have a little obsession.
A weekly obsession that brings us both joy.
It's an obsession that can have lingering effects through the rest of the day.
We enjoy a regular visit to our local Starbucks.
We can be sitting quietly together in Bug's apartment, the TV flickering images of a popular game show when Bug tilts his head toward me with that look. I've come to understand what that sly little smile means. The gentle lift of his eyebrows and the mischievousness dancing in his eyes.
It's become a weekly routine for Bug and I to wander the two blocks to our local familiar coffee house, rain or shine. It's a chance for Bug to leave his home for an hour or so. Even with me in his life and we do so much, there are chunks of time during the week where Bug's on his own watching TV, listening to music on his computer, or surfing the web. These little sojourns for a warm beverage cuts into that routine.
In the cooler weather I bundle Bug in his over-sized ski-jacket and if it's really cold I'll wrap a fleecy blanket around his legs. Most of the time Bug can get himself over to the strip-mall where the cafe is in his electric chair, but every so often he'll ask me to bring him in the manual chair.
Our route shortcuts us through the alley where we avoid the busyness of Hastings street and can arrive to our caffeinated destination quickly.
Arriving to such familiarity is comforting. The sights, sounds and smells wrap up in feelings of welcoming. Bug parks his chair at a table. I still check in with him for what he wants, but it's usually the same each time; short cafe mocha with a splash of peppermint flavouring. The treat that we may or may not have with our drinks is the only unknown factor when we walk through the door. It could be a chocolate chunk cookie, chocolate banana loaf, or any one of the other delectable treats under the glass domed case.
I'm pretty predictable with my drink order as well. I've become one of 'those people' who's developed and fine-tuned their drink order over the years; grande soy chai late, three pumps of chai, no H2O, no foam... see what I mean?
When traveling, that smiling mermaid has become a beacon of familiarity when everything else is unknown. Bug and I can darken the doorway of any Starbucks, order our customary drinks and suddenly we're only a couple blocks from home.
When we were in Mexico with Bug's family we arrived just as a tropical storm was descending on the region. One day we finally braved the rainy elements and ventured into Playa del Carmen for an afternoon of shopping. Bug was chilled from the dampness and we came upon a Starbucks. I asked if he wanted a hot chocolate and he replied with an eager 'Yes!'. As we were enjoying our familiar beverages and watching the rain fall outside, Bug said he didn't think he'd be drinking a hot chocolate on vacation in Mexico! We were so grateful to have stumbled upon this little pice of home.
After Bug and I have enjoyed our treats and waved goodbye to our friendly Barista, we usually head over to the supermarket and pick up some stray and forgotten food item for the evening meal.
As much as we enjoy our trips away, it's the familiarity of the known that brings us home.

Until the next time...

New Caregiver

How did I become Bug's weekly caregiver?
Bug and I had our first face-to-face... encounter... at the end of August 2008. Quite quickly we started to see each other regularly. Most of the time we hung out during the day and had the odd supper together, but since I didn't have a key to his home I had to get Bug back so his current caregiver could tuck him into bed. It was about six weeks later when I received a key and then Bug and I got to stay out later. He was great about walking me through his bedtime routine; it was very specific.
The second week of November I went over to Bug's place after supper for some TV watching. His caregiver at the time was getting ready to go for the night as I had offered to put Bug to bed. When she had herself together for her bus trip home she turned to Bug and said, 'I'm giving my two weeks notice. I can't do this anymore.' Bug didn't respond. He sat in his chair with what was either surprise or shock on his face. His caregiver gave me a look and said, 'You'll be taken good care of.'
Then she was gone into the dark fall night.
It was only a moment or two after she left that Bug's shoulders started shaking and he cried and cried.
He had been with this caregiver for over six years. Bug had no idea she was going to drop this bombshell of news on him. I held Bug as the tears streamed down his cheeks and his rigid body shook out the sadness and shock.
When he'd calmed down I told him he was coming to stay with me that night. I got him bundled up in his coat, grabbed some clothes, pajamas and toiletries and we were out the door.
In the morning after breakfast as I was getting Bug dressed he looked at me and there was excitement in his eyes.
'Would you become my caregiver?' he asked me. 'You already do everything. You know how to do everything. I've always wanted a male caregiver.'
I didn't know how to respond. At this point in time I'd been unemployed almost a year and had no idea what I wanted to do. I was definitely not going back to the kind of work I had been doing.
Bug and I had a meeting with his Mom a couple days later. The time frame was quite tight with only two weeks notice. Bug had talked to his Mom about his idea before the three of us sat down together. She thought it was good, but was concerned about how this would affect Bug's and my new relationship.
I talked about how much I really cared for Bug and enjoyed being with him. Then I said, 'but number one he needs a caregiver before he needs a boyfriend.' This was the basic truth he needed someone to do all the basic day to day stuff and I could commit to doing that.
During the helper's last two weeks she called in sick a couple times and I got some practice at caring for Bug. My official start date was December 1st.
Bug was thrilled and I have to admit I was excited.
Several years earlier I had done child-care for my stepson when he was three and the next year I looked after my two year old nephew. When my son was eight months old his Mom had to go back to work and she offered to pay me to stay home with him. She had a great job as a high-school teacher and I was between jobs. She told me that she'd have to pay someone anyway, so why not pay her son's Dad because she knew he'd get great care. It was a wonderful situation for me as I got to be my son's primary daytime caregiver until he was almost four.
Looking after Bug didn't feel any different in that I willingly would have done the work, but I needed money to pay monthly expenses and Bug's Mom was thrilled that her son was being cared for by someone who really cared for him. It felt like a win win all around. Bug had a new caregiver, Mom was pleased, I was getting paid to hang out and help my boyfriend!
I think some of the people in my life had issue with this. One person, who was an OT, felt that there was a conflict of interest; we haven't spoken in a year and a half.
Bug came out to his Doctor, who's the same man who delivered him over thirty years ago. I think he was caught off guard a bit and asked us to come back and talk to him about it at a future date. When we came back and sat in front of him he asked us questions to make sure that no one was being taken advantage of. This was valid. Bug and I were able to show him what a great situation this was for us.
Other members of Bug's family have come to me at various family events and whispered how happy Bug was. I got told numerous times that this has been really good for Bug.
I know it's been really good for me too.

Until the next time...

Pete

When I started working for Bug over two years ago, he and I went through all the closets and cupboards in his home and did major Spring cleaning, even though it was December. He had several closets in the apartment all stuffed. Over a few weeks we recycled broken electronics, sorted through his clothes, gave car loads of stuff to second-hand stores and ultimately threw out a bunch of things.
Hidden on the top shelf of Bug's bedroom closet was a sad blue penguin. Written in large letters across the penguin's white throat was 'Hi! I'm Pete'. This sad looking childhood toy was examined and eventually put back in his place, the closet door closed, sending him into darkness again.
One evening, a few days before this past Christmas, Bug and I went to his folks place for beverages and a visit. His Mom asked if I wanted to see home movies of Bug when he was a little pupa. She put a tape in the VCR and images of Bug's first Christmas, birthdays, summer vacations and more Christmas' flashed on the TV.
In one scene Bug's Grandpa and Grandma were caught on tape walking through the front door. The crispness of Winter on their faces. They had wrapped presents and tucked under Grandma's arm was a bright blue penguin.
It was Pete!
This was a gift made by Bug's Grandma for his first Christmas. In the grainy video you could see that Pete was a brilliant blue and his throat and chest were a crisp white, like the snow seen through the open doorway on the video. Pete's beak was a deep golden colour and his eyes two large circles of white with slightly smaller circles of black pupil.
Bug's Grandma lived to see a couple more Christmas' as she passed away before Bug was four.
Bug and I got home after tripping down memory-lane with his parents and I went to the closet to rescued Pete from his dark home.
Pete had seen better days.
He was crestfallen as the stuffing in his torso had migrated to other areas of his body; he was in a perpetual bow. His beak was bent at a forty-five degree angle much like Bug's left wrist and there was a hole in the faded golden fabric. Pete's right wing was pinned on and rust marked the puncture holes where the pin held his wing in place. The blue fabric had run into the white fabric around Pete's butt. Here the fabric was yellowed from an old water mark. When Bug's middle brother was a wee little guy he decided that Pete had to go to the bathroom and put him on the toilet. Pete slipped and got a lower body bath in the toilet-bowl water.
I brought the blue penguin to the living-room where Bug was waiting. He asked me if I could fix Pete. When I came back to make Bug supper I brought needle, thread and stuffing. I took the rusty pin from Pete's wing and opened up one of his seams where the blue fabric met with the white. I packed Pete's chest with the eco-friendly filler I'd brought and soon he was standing upright and proud again. I moved my hand gently inside and got to the opening of Pete's beak. It took a little piece of stuffing to get his beak standing straight out again. I carefully sewed closed the incision I'd made in Pete's chest, patched the hole in his beak and put his wing back in place.
Closer examination revealed that Pete's feet were loose, so I made sure they wouldn't go anywhere.
Now Pete stood on the dining-room table almost as good as new. There wasn't anything I could do about his toilet stain; I was concerned that anything I did might perpetuate the blue dye leaching onto the white chest material.
Pete doesn't live on the closet shelf anymore.
His new home is on a ledge close to Bug's bedroom doorway where he guards the room and watches over Bug when he's sleeping.

Until the next time...

Change of Plans

Bug and I had made big plans around our second Valentines together. The Olympics were coming to town and we thought it would be best if we were far far away.
We decided to do a road trip. We'd drive to the men's gathering in Oregon again; Valentine's Day was on the Sunday of that weekend. Then we'd head down to San Fransisco and visit friend's in Berkeley. Then it was even farther south for fun filled days at Disneyland and on our way home we'd stop off in Vegas for a few nights.
It was going to be an adventure!
Our first stop was Vashon Island where we had the bloody heal incident with the jacuzzi tub. That wasn't the way to start a road trip adventure.
Next we went to the men's gathering and had an OK time at first, but after another day it was clear that we weren't having much fun at all. We both took on more and more stress. Finally on Valentine's morning we woke up together in the familiar double bed from our first time there. We had a cabin mate who was still in deep slumber so Bug and I whispered Happy Valentine's to each other and exchanged kisses. Then we talked about how un-enjoyable the past few days had been since we ventured from home. We talked about what was ahead for our Bug and Stitch Road Trip: 2010. The more we talked about heading south, the more stressed we felt.
I made the suggestion that we could just turn around and go home. Bug's body visibly relaxed and that charming grin appeared on his face. We both lightened with giddiness and the though of being home overwhelmed us.
It was decided that we'd leave the gathering as soon as possilbe, even though there was still another day. I packed up our things and we set out mid-afternoon. We stayed at our friend Pansy's home in Portland for a couple nights and rolled into Burnaby the Wednesday after February fourteenth.
The relief we both felt at being home coursed through our bodies. We didn't feel any disappointment at cutting our road trip short.
We learned a big lesson that trip; planning a month long trip was too much for us. We bit off more than we could chew, so to speak and shorter trips would be better for us. We could still go to all the places that we'd planned, just go to them individually, spread out over time.
I got on the computer a few days later and booked us a flight to LA.
We were going to Disneyland in May!
The following September we stayed with our friends in Berkeley for a long weekend.
We have yet to make it to Vegas but that'll happen.

This Valentine's I surprised Bug with an over night trip to Seattle. We drove down on the 14th and stayed overnight at a Ramada hotel right downtown. We walked to a mall nearby and had supper then went to a romantic comedy. It was a wonderful way to enjoy Valentine's with my boyfriend. He bought me lovely helium filled balloons and an over-sized card with monkey's on it and inside it said 'It's Valentine's Day! Wanna monkey around?'. Taped inside was a gift card for a favorite bookstore of mine.
The best part about this Valentine's was that we were together, simple.

Until the next time...

The First I Love You

I wanted the first time I told Bug that I loved him to be special.
My feelings for him had been growing and those three words were on the tip of my tongue, but I refrained from blurting them out.
Our first Valentine's happened to be during the men's gathering in central Oregon. We were greeted on our second morning by Cupid's day.
Bug had gone shopping with his Mom for a present for me and I had a bag of chocolaty/peanut-butter goodies hidden in my luggage for him. Bug's gift to me was carefully concealed in a bag that I had to pack with his belongings.
We woke up together in a double bed in one of the thermally heated cabins. Bug had a huge grin and asked if I wanted to open my present. In the bag was a beautiful heart shaped box stuffed with assorted chocolates. There was a metal key tied to the box as a decoration. I freed it from the red ribbon and put it with my house and car keys.
I gave Bug his present and said, 'I love you.'
But this wasn't the first time.
Nope, I'd professed my love a day earlier.
Each morning of this five day retreat there was something called a Heart Circle. This tradition was taken from the First Nations' talking circle. A talking circle is where members of a community circle up and a talisman is handed around. Whoever has the talisman, or talking stick, has the floor and cannot be interrupted. Everyone present is to give their attention to the speaker. Our group took this premise and called it a Heart Circle. Specifically it's to encourage men to speak what's in their hearts. Instead of a talking stick each person who speaks wear's a shawl.
I brought Bug to Heart Circle on our first morning and after listening to several men share I was moved to speak.
I got up and the shawl was placed on my shoulders from the fellow who had spoken before me. I pulled the shawl in tightly around my torso and started pacing around the circle of friends and strangers. I knew what I wanted to say, but I wasn't sure how it was going to come out.
It went something like this...
'I've been fortunate... blessed, to have someone come into my life recently. He's swooped in and single-handedly changed everything. I was prepared to be single and had no intention of meeting anyone, but I guess someone had different plans...'
Honestly I don't remember exactly what I said, but I blathered on, teared up, made my friends cry and ultimately told Bug that I loved him.
He was sitting in his wheelchair in pink pajamas with this kookie cat pattern and gave a nervous laugh, then said he loved me too.
Later I asked him if it was OK I had done that. I told him that I always wanted to remember the first time I told him I loved him. I figured I probably wouldn't forget it if I made an announcement in the middle of a circle of men.
Besides I only get to tell him I love him for the first time once.
Bug laughed and said I was being a dork. Yes it was OK that I had told a bunch of strangers that I loved him.
How else would I have done it?
Lots of times when I'm fishing my keys out of my pocket to unlock my home, or I'm starting my car, I'll see the key from the heart shaped box of chocolates and be wonderfully reminded of Bug's love for me.

Until the next time...

Independent Living

One of the things about Bug that has inspired me is his bravery.
He is a very brave person.
It takes a certain amount of tenacity to be in Bug's body, to have the limitations and needs that are required to keep him going through a day and yet at the age of nineteen deciding that he wanted to live on his own.
His Mom told me that she'd expected her eldest son would live at home through his adult years. Bug was clear that he wanted to move away from home. At first Bug looked at living in a care facility, but one visit and he knew it wouldn't be for him. The other alternative was to live in his own independent place. It took Bug and his Mom two years to find the home that he's been in now for about a dozen years. The space had to be designed to accommodate a wheelchair and it had to have it's own separate accessible entrance.
Once they found the place Bug's parents said that they would cover all his living expenses. Bug said nope. He wanted to apply for disability through the ministry. This way he would be as independent as his situation could allow.
Isn't that amazing?
For me there was no doubt that I'd leave home, as quickly as I could. There was no doubt that I'd have to find ways to support myself: pay rent, feed and cloth myself. Bug wanted that for himself too.
I'm still awed when I think about how much it took for Bug to be able to live on his own. Even before I set foot in Bug's home that first meeting it was evident that it was set up for him. His electric wheelchair allowed him the freedom to move about at will. While Bug and I were silently checking each other out and he eventually invited me in, he bent over to the side and his forearm hit a button on his wheelchair. There was an audible click and the front door swung open, as if by magic. An electric door opener made it possible for Bug to open it on his own allowing him to come and go with ease.
Inside his home Bug had remote controls adhered to the lower portion of his desk front. These controlled his TV, DVD player and stereo. A large white button turned his phone on and he used his lower lip with his tongue tucked in there to punch in phone numbers. Another button turned the air-conditioner on and off remotely.
When Bug has someone with him they're able to put this aluminum pointer on his head that looks like a mosquito stinger; yes another bug reference. This headgear was designed so Bug could type on his computer keyboard. He's so fast tapping out words using his head.
It's inspiring how Bug has adapted to be able to do things that the majority of people take for granted.
As I've gotten to know Bug and spend time with him, we've worked together to make his home even more his own. We found a lamp that had a push button to turn it on and off. It was intended to be stepped on, but we stuck this button portion of the lamp cord onto the other side of his desk and Bug can wheel up and use his own foot to turn the lamp on and off.
Also, as Bug and I traveled there were a lot of pictures taken. Bug can't leaf through photo albums, so I created collage photo frames of our trip to Disneyland and another trip we made to San Fransisco. These were brilliant for Bug as they encapsualte the whole experience in one frame.
I'm beginning to understand what works and possibly doesn't work for Bug as I spend more time with him.
My mind has been opened up more than I could have imagined.
Yes, Bug is a very brave soul.
And thanks to technology, he's an independent living brave soul.

Until the next time.