Sunday, August 31, 2008

The magic of music...

I love the song called Carolyna by Melanie C. It's catchy and upbeat. The Spice Girls are not one of my favourite groups, so I am surprised that I like this tune so much. I first heard it on a late night video countdown show. Once I was hooked, I would crank it up whenever I heard it. Since it was often on the video countdown around 3:00 a.m, I hope my neighbours weren't woken up by my TV. It takes more than two or three minutes of a loud song to disturb some one's sleep, right?

It's sunny out this morning. I haven't been outside yet, but I think it will be a bright day. I am a bit grumpy. Sleeping hasn't been happening much for me lately, which could be due to my after dinner coffees over the last few days. If my insomnia is due coffee in the evening, I don't have a right to complain, because I know what to do to sleep better. Knowing what to do and actually doing it are too different things. When it comes to coffee, I rarely cut back for any reason.

I watched the show Top Chef when I went to bed last night. It was the first full episode I have watched all season. The contestants were brassy and rude, more-so than most reality cooking shows I have seen. I was glued to the TV and couldn't wait to see what would transpire. It's unfortunate that I didn't start watching the show at the beginning of the season. There was probably another show on at the same time , so maybe my late start is for the best. I already watch too many shows when I ought to be sleeping.

The song High And Dry by Radiohead was just on Yahoo Radio. I hiked up the volume. It's such an awesome song. Every time I hear it, I remember when I moved into my first apartment. My older brother would often drive me back from visiting my family since his girlfriend lived near by. The trip gave us a chance to talk and listen to music. His taste in tunes is similar to mine, so we would usually compare current favourite songs and artists. My brother loves High and Dry. He sings along and makes me laugh. I always enjoyed our trips back to city since I usually discovered new songs and it was a time for just my brother and I. Much has changed for both of us since. My brother is married, works full-time and now owns a home farther away. I moved, met the Observer and now take the bus back and forth to my family. Though life has changed, I love how music can bring us back to happy times in the past. It can also make the present more groovy, and who minds that?


Saturday, August 30, 2008

A sweet coffee and stranger...

I had a misto at Starbucks tonight. It's an equal volume of coffee and milk mixed together. It was good, but a hot expresso is my still my favourite "fancy coffee." The barista who served me was nice, so I didn't mind too much when she messed up my order slightly. I guess this is easy to do when there are so many different choices. I enjoyed people watching and my sophisticated coffee. Unlike my usual house blend, the misto wasn't bitter or strong. It was sweet and milky. I took a long time drinking it and it warmed my insides. I love that sensation. It's comforting.

After Starbucks I went to the drugstore. As I was waiting in line, a gentleman hooked up to oxygen was talking about how he was waiting for a lung transplant. He was so concerned about making sure I was served. His kindness meant so much to me, especially given his fragile state. When we have to struggle to function, there is often compassion for others who do as well. There are parts of being a minority that have taught me a great deal about human nature. The man made me realize how fortunate I am to be breathing without thinking. Hours earlier, here I was worrying about a few bugs on lettuce.

I am about to go to bed and I will pray for the sweet stranger in the drugstore who was so thoughtful tonight. May he breath easier soon.


Green things on my greens...

I am disgusted. I was just eating salad. I noticed a wee green bug crawling on my pants. It looked like a green beetle. I took a second to look in the salad bowl and noticed (with horror) more green beetle bugs. Isn't that gross? How many did I eat? Are they crawling around in my stomach? I am nauseous thinking about it.....

In a panic, I called my Mom. She told me not to worry, I won't get sick and to make sure my lettuce is washed well. I know that it's important to wash produce, but now I know exactly why. There are butterflies in my belly (along with creepy green things.) I am trying not to think of those bugs. What if they give birth to a whole bug family in my stomach? I am going to Starbucks. Hopefully I will be able to stop pondering these nasty additives in my salad. I usually love salad with pear, apple, cranberries, nuts or cheese added in, but those things don't move. I like my food to be still...


Friday, August 29, 2008


I am a little sad that the last official weekend of summer is upon us. I love that fall is getting closer, but fall turns into winter which I don't dig. There is something so freeing about being able to go out without a jacket.

Last night I met the Observer's aunt and uncle from Belgium. They were very sweet. Neither of them spoke much English, so there was little conversation between us. I did a lot of smiling and nodding. They brought me a pretty scarf and chocolate, a very thoughtful gesture. I could tell how much the Observer's parents are enjoying having family here. There was a contentment in the eyes of Observer's father and his mother was happily and expertly being a six-star hostess. The Observer loves company and I am always touched by how important it is to him that I meet significant family and friends in his life. He was translating for me and getting mixed up. It was cute, funny and slightly irritating all at once. The Observer is considerate in some unique ways.

Today I was a bit angry over some political drama involving my attendant care. There is one staff member who is engaging in silly, pointless, power struggles. She annoys, upsets and flusters me. Before I went to bed last evening, her bizarre behaviour had me so confused. My head was spinning trying to figure her out. Her complaints and weird ways left me baffled. Having ruffled feathers makes it challenging to sleep, but I did manage to catch some shut eye. A fresh start and some reassuring words from a trusted friend made me feel better. There are some things in life not worth understanding. I learned last night that communication doesn't only happen through speaking the same language; it can happen in a house full of love and family, and that can be comprehended in any language.


Thursday, August 28, 2008

Buzzed up...

My new shirt is too big. I show too much cleavage. For some ladies, this would be a good thing. For me, no thanks. I do like to feel feminine and curvy, but not when it involves showcasing my chest. The attendant who helped me try on my shirt suggested maybe I need a smaller size. The more I think about it, buying another short-sleeved shirt is silly; summer is almost over.

I had trouble sleeping last night. My mind was buzzing. I ordered a decaf coffee last night so that I could sleep. Dad brought my coffee to our table. He takes his black, so he's not used to having to put milk or sugar in a cup of java for a more complicated connoisseur like me. He mentioned a few times that he may have mixed up my decaf and his regular coffee. As I lay in bed with my thoughts whirling, I had to agree. Thankfully, I'm not too tired today.

I am just about to go run some errands. People sometimes stare at me because of my wheelchair. Having lived my whole life with this minor annoyance, I am accustomed to long, curious glances from strangers. I know they are only unsure of a girl who is a bit different. I try not to emphasize my differences. If people stare at me today, it won't be because my chest is on display.


Wednesday, August 27, 2008

A brighter day...

Sweet, sweet, relief! Well, my stomach troubles are sorted out. I woke up miserable this morning. I still felt nasty and as huge as an elephant. Within seconds of honouring the call of nature, I felt like a whole new me. My sore back disappeared and my energy returned. Instead of resembling a huge elephant, I felt like my usual, chunky self.

Taking advantage of my brightened state, I picked up my other purse (which only held cash, not my cell phone or bank cards) and went to the St. Lawrence where I browsed through the funky, fresh, stuff. I bought a tiny flask of maple syrup for the Observer's relatives from Belgium.

There's a new store close to the market that is affiliated with Loblaws called Joe Fresh that I have wanted to check out for a while. I liked their clothes and spent a long time debating whether I really needed anything new. It was the usual "before purchase" routine of, "Will I wear this? Do I need it? Is there anything similar already in my closet?" It took me half an hour to finally leave the store with a pink and red tunic-style top. I reasoned that it would hide my bulges. I don't often buy clothes unless I specifically need them. The odd time I do, I have a habit of buying a coffee shortly after my big purchase. It's bit like having pie and ice cream. No one needs both, but if we're already indulging, what difference does it make to indulge a little more? My logic is slightly twisted, but coffee fogs my judgement.

Halfway into my apartment, I noticed the garbage can down. The garbage can is ALWAYS standing up. For a second, fear ran through me along with thoughts of an intrider. Seconds later, I realized that, yes there was a man in my apartment. It was my Dad. Years ago, he had made a spare key to get into my place in an emergency or if, like today, I was shopping minus my cell phone and he was up for a visit. I am so glad he has a key. Though he rarely uses it, just knowing that he can reach me anytime is comforting.

Dad and I went for sushi. I loved hanging out with him. It's been a while since we've had some top-notch time for just us. The sushi was good, but any food is enjoyable when I eat in the company of my favourite father. We finished the night by having coffee at a shop near my building. There was a man washing windows before we went into the coffee shop. He stopped and said, "Let me hold the door open for you and your lovely daughter, sir." My dad thanked him and told the man that I needed my hair washed, so it would be great if he could do it while he had all the right supplies. We all laughed. Moments like that are rare.

Remember how yesterday I was so miserable and I hoped a good sleep would change my perspective? It took my body's cooperation, some shopping, and a surprise visit from Dad to make my day nearly perfect. I asked for Dad's opinion on my new Joe Fresh shirt. After giving it a good look, he said, "Doesn't it look like one you already own?" I'm not meant to keep that shirt, but it did make my day a happy memory.


Tuesday, August 26, 2008

Grumpy girl...

The weather today was beautiful. The sun stayed out all day and there was a refreshing breeze. I knew I needed to take advantage of the seasonal climate, so I headed straight up a major city street. I didn't turn once, just kept going straight. I found some nice, safe little areas. Before I knew it, I was in Little Italy. The red, white and green street signs gave the area away. I saw lots of little motorcycles (vespas) and heard Italian words. There were so many gelato places. Being in Little Italy made me miss the Observer. When I'm surrounded by people who talk like his family, kind of look like him, and I see things I talk about with him, how could I NOT miss him? The Observer and I haven't seen much of each other this week, because he has family visiting from Belgium. I miss our dates, talks, laughter, and connection. I miss my family too....

My stomach is bothering me. It's nothing major - just my normal, every day struggles. My troubles are making me miserable, bloated and upset. I know I'll be OK. Right now, I just want to go home. Maybe a good sleep will improve my outlook. I feel as big as an elephant. If I could rid myself of waste like one, my stomach would be better and I'd be much happier.


Monday, August 25, 2008

Only family...

I just heard an eerie scream. It's late and dark. Those factors make the scream more freaky. My music is on now. The noise will block out any activities I would rather not hear. Sometimes being oblivious keeps me happy.

The weather was colder than I expected. There was a windy chill in the air. I wore my capri pants. I am sad to think that I have already made the most of my summer wardrobe. More summer days have passed than are left to enjoy.

Mom and I talked for a while on the phone today. This isn't unusual. I enjoy our talks. Mom asked when I'm coming home again. I told her that I wasn't sure but it wouldn't be long. She said, "I'll make you salad."

I had to smile. I love salad and Mom knows it. Her offer was so sweet and pure. My heart surges of affection for her all the time, especially when she says simple things like she'll make food for me. I don't come home for the salad; I come to feel that love that we only feel for family. Of course, the salad is good too.


Sunday, August 24, 2008

The queasy shady lady...

It's almost 7:00 p.m. I feel like going outside. I might. Making decisions has never been my strength. I've been home for a little while from visiting my parents. We had a nice visit. Home is usually so predictable, and that's part of its appeal.

My bus ride was long and late. The driver had a full load of passengers. He was friendly and relaxed and that makes any delay more manageable. He picked up a shady lady who made me nervous. I think I heard her say she was going to be sick. Malaise aside, the woman looked unstable. Her expression was strained and she was just off. Her teeth stayed clenched for the whole ride and her running shoe was half on. Anyone looks rough when ill, but I bet she has other, more permanent difficulties. My assumption could be wrong, but that's what I thought. Yes, I was being judgemental, but my gut instinct kicked into gear. Vomiting in any form distrubes me, so hearing that the shady-looking lady wasn't feeling well really put my guard up. Luckily, she made it home without any upheaval. Phew! Our brief encounter gave me butterflies, but not the good kind. I live around shady people, but I suppose sitting beside one who confesses to being close to throwing up is different than being asked to spare change or seeing someone rifle through garbage. Vomiting traumatizes me; whether it's the fine work of a shady lady or someone decked out in brand name clothing. Barf is barf - just like people are people.


Saturday, August 23, 2008

A morning at the market...

I met my sister and my soon-to-be-brother-in-law at the St. Lawrence Market this morning. I love going there. Any opportunity to hang out with my sister is important, but especially at the market. The weather is just too beautiful not to be outside. There is a delicious, rich coffee they sell that always makes me happy. That coffee alone reason to stop by the St. Lawrence Market. It's Buskerfest downtown this weekend, so the market was even busier than usual. I enjoy the challenge of getting through the crowds without bashing into passerby in my wheelchair. I accidentally backed into a lady who was sitting eating at a table, but she was kind and understanding. I have come across people who are not as understanding, so I really appreciate when people realize I made a mistake. My brother-in-law was acting as my shield by walking in front, so we made a good team.

My Mom has a tea cozy that is thirty years old. It's stained, faded and ugly. I have been searching for a new one for months. A major reason for going to the St. Lawrence Market today was to look for a tea cozy. My brother-in-law helped me find a huge assortment. We spent a while trying to pick out a tea cozy that matched Mom's taste and house decor. I think we found just the one. My brother-in-law has good taste, so I trust his opinion. I didn't buy the tea cozy yet, but now I know where they are sold and will go back and spend another sunny Saturday morning there. Some tasks are worth taking time to complete.

Friday, August 22, 2008

Sweet endings...

It's 11:40 p.m. Almost bed-time. Dinner tonight was fun. We ate at 8:00. p.m. I was VERY hungry. When I'm hungry, I get a bit snappy. I'm not proud of my snappiness. Unfortunately, the Observer must be used to my "before dinner grouchiness."

The weather stayed on our side, so we made it to the place that was our original first choice. I had salad with feta cheese and cranberries. My favourite aspect of the restaurant we choose is that their tables look as though they could be part of a cottage. The wood could be used to make a boat or dock. We had a nice view of the city. Being late, the sky was dark and the lights looked pretty. I had a side of banana bread and stole the two pieces of garlic bread that came with the Observer's pasta. I thought the exttra bread would be my dessert, but I ought to know myself better than that, because we ended up sharing an espresso mousse with chocolate biscotti. Sometimes there is no substitute for a chocolaty ending to a beautiful summer night.


Reversing a thumbs down...

I haven't accomplished much today. This morning I puttered around not doing much. I talked to my parents which is always good. I am going home tomorrow and will see my brother and sister-in-law. My brother seems to be very uncomfortable, but my sister-in-law is doing OK. At least half of the situation is positive. In reality, how could my brother have surgery and not be uncomfortable? While pain is not pleasant, it's expected in this instance. Like everything, it will pass and my brother will be better off for having it. I do feel for the guy.

The day started off sunny, but it's looking a bit like rain. My Dad informed me that rain is in the forecast. The Observer and I are meeting for a late dinner. We are planning to wheel a distance so hopefully we miss the rain. Last night I made reservations at three different restaurants. If the weather doesn't hold out, we may end up picking the closest option.

Remember my attendant care troubles last week? Well, my attendant was warned by the executive director of attendant services to shape up or shape out. Last night I was very nervous to see her because she has a habit of retaliating with nastiness when clients complain. Thankfully there was no mention of complaints or that I reported my attendant a second time. She said hello to me and made small talk and that was a pleasant surprise. Maybe she was warned against giving the silent treatment. Whatever the reason, I was glad my attendant was civil. Her eyes were red, puffy and sad - a result of her warning, I'm sure. While I don't like to learn anyone is upset because of my actions, I recognize that I had to come forward and complain or her performance would get worse.

The actions of attendants have a direct impact on the well-being of all the clients they see each day. They can easily brighten or dampen some one's day. I do respect my attendant. She is smart and skilled in her work. She does her job well when she puts her heart into it. The trouble is that her heart is often not present. My attendant can be lazy, controlling, exhausted and manipulative. My hope is that her warning will help my attendant see that she is better than she realizes. Wouldn't this benefit all who work with her and, most important, my attendant herself? While negative feedback and a call for improvement is a blow, isn't a good sign people know we are capable of doing more? I doubt my attendant will see her poor reviews in this light, but maybe she will smile a little more. They would be fake smiles, but we all have to start somewhere...

Thursday, August 21, 2008

Creatures of mystery...

I saw something brown with a tail in the hallway outside of my apartment door. My brain didn't register that it was a living creature until it was gone. That was probably best for both of us. The type of creature is still a mystery to me, but just knowing that there was A creature at all gives me the creeps. I'm itching thinking it. On the way inside my apartment,I stayed by my automatic door until it closed completely. That was one fast critter and he or she is NOT welcome in my home....

I am listening to Oh by the Dave Mathews Band. I love the lyrics:

The world is blowing up
The world is caving in
The world has lost her way again
But you are here with me
But you are here with me
Makes it ok

I hear you still talk to me
As if you're sitting in that dusty chair
Makes the hours easier to bear
I know despite the years alone
I'll always listen to you sing your sweet song
And if it's all the same to you

I love you oh so well
Like a kid loves candy and fresh snow
I love you oh so well
Enough to fill up heaven, overflow,
and fill hell
Love you oh so well

And it's cold and darkness falls
It's as if you're in the next room so alive
I could swear I hear you singing to me......

It's another sunny day. I went shopping this afternoon. I hit up H & M and Old Navy. My wallet isn't any lighter, but I did come close to buying a pair of brown pants and a pink and red top from Old Navy. The top was long and that style works for me, as it hides my roll. After some pondering, I decided I didn't really need new clothes, especially now that fall is nearing.

Have you ever noticed that kids look cute even when they are sitting still, looking around? They don't have to do anything to be cute. They just are. They have no expectations like adults. They chill without worrying or thinking ahead. They take the present for what it is - now. It's refreshing and so appealing. Maturing means learning to plan and predict and some of us (me) have trouble stopping. When your mind is constantly working, it's difficult to enjoy the present. Being only partly "here" does have advantages - like when a furry brown creature is in front of your door and you're too preoccupied to notice.


Wear Sunscreen...

Ladies and Gentlemen of the class of '97... wear sunscreen.
If I could offer you only one tip for the future, sunscreen would be IT. The long term benefits of sunscreen have been proved by scientists whereas the rest of my advice has no basis more reliable than my own meandering experience. I will dispense this advice now.

Enjoy the power and beauty of your youth. Never mind. You will not understand the power and beauty of your youth until they have faded. But trust me, in 20 years you'll look back at photos of yourself and recall in a way you can't grasp now how much possibility lay before you and how fabulous you really looked. You are NOT as fat as you imagine.

Don't worry about the future; or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum. The real troubles in your life are apt to be things that never crossed your worried mind; the kind that blindside you at 4pm on some idle Tuesday.
Do one thing every day that scares you.
Don't be reckless with other people's hearts, don't put up with people who are reckless with yours.

Don't waste your time on jealousy; sometimes you're ahead, sometimes you're behind. The race is long, and in the end, it's only with yourself. Remember compliments you receive, forget the insults; if you succeed in doing this, tell me how. Keep your old love letters, throw away your old bank statements.

Don't feel guilty if you don't know what you want to do with your life. The most interesting people I know didn't know at 22 what they wanted to do with their lives, some of the most interesting 40 year olds I know still don't.
Get plenty of calcium.

Be kind to your knees, you'll miss them when they're gone.
Maybe you'll marry, maybe you won't, maybe you'll have children, maybe you won't, maybe you'll divorce at 40, maybe you'll dance the funky chicken on your 75th wedding anniversary. Whatever you do, don't congratulate yourself too much or berate yourself, either. Your choices are half chance, so are everybody else's.

Enjoy your body, use it every way you can. Don't be afraid of it, or what other people think of it, it's the greatest instrument you'll ever own.
Dance. Even if you have nowhere to do it but in your own living room.
Read the directions, even if you don't follow them.
Do NOT read beauty magazines, they will only make you feel ugly.
Get to know your parents, you never know when they'll be gone for good.
Be nice to your siblings; they are your best link to your past and the people most likely to stick with you in the future.

Understand that friends come and go, but for the precious few you should hold on. Work hard to bridge the gaps in geography in lifestyle because the older you get, the more you need the people you knew when you were young.

Live in New York City once, but leave before it makes you hard; live in Northern California once, but leave before it makes you soft.

Accept certain inalienable truths, prices will rise, politicians will philander, you too will get old, and when you do you'll fantasize that when you were young prices were reasonable, politicians were noble and children respected their elders.
Respect your elders.

Don't expect anyone else to support you. Maybe you have a trust fund, maybe you'll have a wealthy spouse; but you never know when either one might run out. Don't mess too much with your hair, or by the time you're 40, it will look 85.

Be careful whose advice you buy, but, be patient with those who supply it. Advice is a form of nostalgia, dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts and recycling it for more than it's worth.

But trust me on the sunscreen.

- Unknown

Wednesday, August 20, 2008


The world sure feels different after a good sleep. Actually, it's my perspective that changes - not so much the world. I was so tired last night. I read before bed and I am surprised I was able to do that. Reading requires focus and that's hard to do when one is exhausted.

Mom called this morning and gave me a report on my family. My sister-in-law is feeling well so far. Hopefully she is one of the "lucky" ones who doesn't experience too many side effects from chemotherapy. I imagine that she is a little nervous because this is her first treatment, so she doesn't know what to expect. My sister-in-law keeps reminding herself that she has one treatment down and seven to go. She's keeping her eye on the end of the road, which is good.

My brother is very uncomfortable and not sleeping well. He's trying a stronger medication today. Hopefully he will get some relief. He and his wife have a big, sweet, goofy retriever named Brophy. Brophy is staying with my sister-in-law's family until things calm down. Brophy is the light of their lives and they are really missing him. My Mom is going to visit my brother and his wife. She is bringing their new puppy, Riley (pictured above!) upon my brother's request. It must be possible to have dog withdrawal. There is nothing like a puppy bounding around to remind us that life is one great adventure.

I love listening to music on my computer. Last night I put my computer on sleep mode without fully turning off the music. The computer was in mid song. Half an hour later, I heard this weird buzzing and the rest of the song came on blaring. I was totally startled until I realized the noise my music. I was just listening to a song by Adele called Hometown. Adele has a folk, jazz, classic sound. I think she is an English artist. Hometown is the first song of hers that I have heard. I liked her style, so maybe I'll try out more of her stuff.

A song by Scarlett Johassen (the actress) called Falling Down just came on the Yahoo Radio Station. The background sound is funky, but I'm not taken by her voice. I get the feeling the instrumental part of the song is trying to mask Scarlett Johassen's (almost) average voice. Isn't she working on a second album? Falling Down is a reminder that one ought to stick to doing what is natural, instead of getting too confident and being something that one is not. I applaud anyone willing to try something new, but when the first attempt doesn't go well, why try a second time?

My jeans are a bit tight. I feel like a fat, bloated elephant. I am worried that I am becoming a chunky monkey. My face is becoming rounder each day. I ate a salad with the Observer today, came home and ate more salad and proceeded to ruin my good intentions by eating a brownie and a shortbread cookie. I am aware of how superficial and self-absorbed my food and weight worries may seem, but when things aren't completely stable in my life, my weight is the first thing on my mind. Crazy, isn't it?

I like to tell myself that we all behave or think in ways that don't always make sense. Maybe that's how we stay sane. Take me - I'm a pretty stable girl but my biggest fear is that I'll become overweight.

Tuesday, August 19, 2008

Getting through...

Dad stopped by to see me today. It was a sweet surprise. He drove my sister-in-law to the hospital for chemo and it's not far from my apartment. I'm not sure how things are going for her now. I don't want to call and ask in case something is going on or no one can talk. I hope she is OK.

My brother sounded a bit rough when I talked to him today, but he was still joking with me which is a good sign. My Mom is with him, which helps them both. Mom would worry herself into the ground if she didn't see my brother for herself. I suppose most Moms would, but mine seems to be even more anxious because she is a nurse.

I couldn't sleep last night. Starbucks past 6:00 p.m. isn't smart. You would think I would learn, but coffee is my addiction. I went out for sushi with a friend and we usually finish our evening with a visit to Starbucks. Of course I'm not one to turn a chance for coffee down, even in the early evening hours. I asked for a tall (small) coffee, but they gave me a grande (medium). The made a mistake and gave me a cafe au lait (a coffee made with half milk and half coffee) when I just wanted a regular coffee with milk. They corrected the order after I politely said they made a mistake. I felt fuzzy asking them to redo my order, so I wasn't about to point out they got the size of the coffee wrong too. It would have been smarter to order decaf, but my brain doesn't always kick in when the smell of coffee is everywhere.

The sun is shinning, but the wind makes the air a bit chilly. I'm pretty tired. I had a piece of pie and a piece of cake this afternoon. I was very naughty. All that sugar must be getting to me. I am glad this week is getting underway for my family. They say the only way out is through. Hopefully that is true. It's impossible to predict what the future holds for any of us, so we all keep moving toward it - that's our only option. It's a bonus if we enjoy the journey and feel sunshine along the way.


Monday, August 18, 2008

Breathe in, breathe out...

My family started a rough week. Today my oldest brother had surgery. Tomorrow his wife starts four months of chemotherapy. I am so worried about them. My brother will be OK. He'll be uncomfortable, but it will get better. I'm sorry he hurts. He's such a good guy. As for my sister-in-law, it makes me cry to think of what she will endure. My sister-in-law is so good and kind. She has such pretty hair and it will be gone for a bit. I hope she is not too ill tomorrow. I hope she knows that I'm thinking of her and praying for her.

There is a very big lump in my throat tonight. I'm so sad for family. I'm listening to sad songs. I wish I could wrap my arms around my parents and my siblings. Before I close my eyes tonight, I will ask God to take care of them all and ease their pain, suffering and worry. These lyrics from Mat Kearny are making me cry, but I really like them:

Hold on hold tight
From out of your sight
Everything keeps moving on, moving on,
Hold on hold tight
Make it throught another night
Everyday there comes the sun with the dawn


Sunday, August 17, 2008

A night to remember...

I went home last night. The Observer and I had dinner at a restaurant nearby that is a family favourite. Hopefully the Observer enjoyed it. I did, but I always like having dinner with him. The restaurant isn't far from my parents so I thought we could wheel there. This way the Observer could meet our family's new puppy. Well, I wasn't totally sure how to get there. My sense of adventure is sharp; my sense of direction - not so much. The Observer knows that, once I get an idea in my head, good luck talking me out of it. I got us headed in the wrong direction but realized before we went too far. The Observer was getting nervous. He trusts me, but he knew I didn't trust myself. We somehow got to a landmark that told me we were going the right way. Sometimes it's better not to question how things turn out - just be grateful they do.

Our luck was short lived. We had to wheel across a very bumpy, unpaved road. When I'm nervous I laugh, so I went into hysterical giggling. I even wet myself, which is better than the Observer's or my wheelchair tipping. I was so overcome by nervous laughter, I couldn't drive my wheelchair. The Observer told me to ******* go! I was shocked. He has never swore at me, but I guess he was trying to stop me from being killed. I felt my purse drop from my lap while crossing a very busy street. A kind stranger got out of his car and retrieved it for me. Somehow no cars ran over it. I'm so glad, because my cell phone was in there.

We both made it home safely. The Observer didn't get to see my parents' puppy, but he did get dragged along on a crazy excursion - so crazy that he cursed and I went myself. It was definitely a memorable night...


Saturday, August 16, 2008

The sad truth of losing touch with reality...

There's sunshine streaming through my window. It's refreshing not to wake up to rain. I didn't sleep well last night. Maybe it was the Starbucks coffee that kept my eyes open. I'm a bit tired, but not exhausted. My mind is on my family as usual.

Grandpa is having a rough time at the respite home where he's staying. He was not feeling well yesterday when my Mom went to visit. I think he had plumbing issues. I know how uncomfortable that can be. Late last night Mom got another phone call from the staff to say Grandpa was causing quite the disturbance. He thought he was the owner of a building and the place was being trespassed. By the time my Mom arrived, Grandpa had calmed down and the staff said that they thought it must if she left before Grandpa saw her. She sounded so tired on her way home. This morning Grandpa kept asking to go home, get his pajamas and go to sleep. He was trying to follow my Mom home. I think part of her wanted to let him.

I don't know who Alzheimer's is harder on - the person who has the memory loss or the family. Grandpa will forget where he is, but Mom know that things are only going to get more difficult. In a way, I hope Grandpa soon forgets the he is respite care. Maybe Grandpa will be happier if he doesn't realize that he's away from home. Sometimes losing touch with reality is easier than living in it. Isn't that a bittersweet fact?


Friday, August 15, 2008

A peachier perspective...

I'm grooving to Ben Harper's Burn One Down and having a kick-arse party-for-one.

I feel calmer now. That's ironic because I just had an Americano coffee from Starbucks. The Observer was here this afternoon. We hung out and talked, which is always a good time.

I have been trying to focus on more positive, happy topics other than last night's drama with my attendant. The manager of my attendant care paid me a visit this afternoon. I told her how angry I was over last night's confrontation and felt much better. She heard me and will act appropriately. Part of me is worried about more trouble, but on the bright side, it can't get much worse.........there's only up from here.

Last night the Observer and I went out for dinner. It was actually my second dinner since I had eaten before leaving home. I was being very indulgent, but I was physically hungry. I ordered soup and crackers and also ate half of the Observer's nachos. It was an enjoyable feast.

On the way back from the restaurant to our bus stop, it poured rain. Getting wet is OK with me, but when I saw lightening my anxiety shot up. I get so freaked out by bolts in the sky. I was pretty snappy to the Observer because I just wanted to get indoors. I feel bad for being rude. We made it safely inside and bought hot coffee that warmed me right up. The coffee shop employee who took my order had little paw print tattoos on her arm. She was friendly, so I was about to say, "I like your paws," when I realized how funny that sounded and couldn't stop laughing. She must have thought I was nuts.

I don't know what tonight will bring with my attendant, but for now it's just Ben and I burning one down.


Not a goodnight...

I'm not in the brightest of spirits today. Hopefully I can turn my outlook around and liven up. Sometimes changing my perspective in a day sounds easier than it actually is.

One of my attendants is trying to intimidate me. She is a master of bullying and manipulation. Three years ago, when I first moved into my apartment, this attendant was very pleasant and accommodating. I was pleasant too. As she got to know me, she began asking for favours like if she could borrow food or sleep on my couch. I wanted to say no, but felt totally backed into a corner. I knew my attendant was taking advantage of me. Her behaviour was an example of the "I scratch your back, you scratch mine" principle. When we use these tactics on the job, I don't think the results are good. Over the years, my attendant has become bolder and more manipulate. She was also lazy and showing up late for work. Finally I had enough and reported her to management. She wouldn't talk to me for four months. While I found interactions with her to be tense and awkward, I was glad to be getting better service. Recently, this attendant was evaluated by co-workers and consumers (me). Not surprising, the evaluation was not positive.

Last night this attendant asked if I'd be willing to have a meeting with her and the other consumers to talk about her evaluation. Is she kidding me? Why would anyone want to rehash a bad review? At first I told her that it would depend when the meeting was, but she knew I wasn't comfortable. I wear my feelings on my face. We continued to argue a little and I went to bed feeling totally intimidated which was exactly her goal.

I have phoned the manager who has told me to report any repercussions from this attendant's evaluation. I am so mad. The attendant is being such a bully. I don't know whether she is behaving this way towards other consumers, but it makes my blood boil. When the attendant was acting confrontational last evening, my voice was shaking. She apologized for upsetting me. I wasn't upset. I was angry and my voice shakes because I am afraid of losing my temper and blowing up. I didn't explain this to my attendant because I know she is not capable of understanding or caring. She is mean and conniving.

I will not let myself be bullied by a fifty-five-year-old woman who ought to know better than to borrow food or sleep on the couches of those she is paid to assist. I am very upset, stressed and annoyed today. On the bright side, I slept well and the sun is shinning. My day will not be spoiled. Life is too short to miss making the most of a sunny, August Friday. There are always going to be people who make me angry, but summer days are only here for so long.


Thursday, August 14, 2008

Ring, Ring, Screech, Screech!

My phone has been ringing off the hook today. I woke up to it ringing and it hasn't stopped for more than half an hour today. My wheelchair has been making a weird screeching noise for the past week. Whenever something feels a bit off with my wheelchair, I try to get it checked out right away, In my experience, it's a lot easier to get a small problem fixed before the same issue turns into a big one. Well, since making the appointment with the repair technician, I haven't noticed my wheelchair screeching as much. It's like making a doctor's appointment and when the day it's time to go comes around, we feel better.

The technician knows me well and is pleasant. Though I didn't have a wheelchair problem, he did fix up my shower chair so all was not lost. My shower chair has been difficult to push. He cleaned and oiled the wheels. There was enough hair stuck to them to make a wig. It looked like all my hair which makes sense. It would be a bit change if it were red, blond, black or grey hair since it is a shower chair. Who else would need sit in it besides me? In an emergency, I think the Observer did, but he has no hair to lose. The top of his head is as smooth and bald as an egg. The Observer's head is one of his best attributes. People love rubbing the top of his noggin.

Speaking of the Observer, we are meeting for coffee tonight. It's been a week since we've seen each other, so I'm looking forward to catching up. Coffee is a bonus too.

The phone stopped ringing. It's quiet and peaceful. For how long, I have no idea.


Wednesday, August 13, 2008

The world through black coloured glasses...

Today I had a visitor from the Independence program, (the place where I have been working and talking about for the last few weeks.) Part of the last week is going to interview a person with a disability who lives in the community to see and find how he or she functions. I have had a visitor just about every year since leaving home. It's an hour every summer that I always look forward to. It's a chance to talk to an ambitious young person and we learn from each other.

Well, I had a bit of an idea that my visitor was not the most perky and motivated of girls. I got to know her during my nights working at Ryerson and realized quickly that her biggest obstacle is her attitude. She sees every challenge as negative and complains. That said, my visitor did make an effort to chat with me during my first night at Ryerson. People who go out of their way to talk to a new person in a group usually have some good qualities. I was told by the program director to try to give my visitor a "gentle dose of reality." She came with a friend of mine who is also a staff and former participant. I was happy to see my friend and we had trouble involving the participant in the conversation. She was falling asleep. After touring my apartment, my visitor brightened up but kept talking about how much she couldn't wait to give the program staff a piece of her mind over not being to reach the toaster. I listened and tried to point out the positive which seemed to annoy her but it's hard to say for sure because her eyes were closing.

I don't know whether my visitor benefited from our chat. Probably not, but it's alright. I hope she has a good sleep tonight. She needs rest. Maybe life will look brighter to her tomorrow. It's hard to say whether one good sleep can change a person who views things from the dark side, but a night of high quaility zzzs can't hurt her.


Tuesday, August 12, 2008

Cavities found a home in my mouth...

I was always proud of the fact that I never had a cavity. Notice I am writing in past tense. My dentist informed me that there are little ones forming between my teeth. We can't be lucky forever, can we? At least she's a kind dentist. It's better to hear bad news from someone who has manners and compassion. While getting my teeth checked out, I enjoyed staring at the funky coloured light hanging over my head. It's yellow, white, red and orange all crammed together to make one mesmerizing sight. The hygienist was pleasant too. She made polite conversation and was wearing orange scrubs which automatically earned her points with me. A conversation in the dentist chair is very one-sided. Talking while one's mouth is being held open and prodded with a big metal instrument is impossible. I suppose this isn't news to those in the business of teeth. I would rather have one person talking than stone silence, especially since going to the dentist is a bit unnerving.

Being home is always so special. I am very lucky. My parents' new puppy is named Riley. It's official now. She's bonkers. Her favourite thing to do is bite my shoelaces or anything else she can reach. All puppies do these things I guess. It's all new to me because the two other dogs in our family previously were past the puppy stage.

My Grandma had to go to California, so she left my Grandpa in a respite house for ten days. It was a spur-of-the-moment decision that surprised the rest of my family. Grandpa has rarely been away from Grandma in the last few years since his memory started to deteriorate. My parents have been visiting Grandpa and he seems happy. He doesn't know where he is and maybe that's better. I hear he's been socializing so at least he is himself. Grandpa is also clean, safe and well fed and that's what matters. Grandpa isn't home, but I hope he feels as though he is. After just leaving home myself, I can say for certain that there is no substitute for that comfort. If my theory that the notion of home is not particularly a place as much as a feeling we experience from sharing the company of others, Grandpa is OK.


Monday, August 11, 2008


The sun is shinning for now. Off and on bursts of sunlight are better than none at all. I got up very late this morning. I always do on Mondays. I won't have this luxury when I find a permanent job so I better enjoy it now. My two morning coffees were delicious. It's going to be a good day. Great morning coffee makes life more enjoyable.

I'm going home today. It's been just over a week since I saw my parents, so I'm looking forward to catching up. Tomorrow I have some appointments close to them, so it makes sense to get them out of the way while I'm in the area. I have to see the dentist, which is OK. She's kind and gentle. A few years ago, she gave me a top-notch electric toothbrush, and it's one my favourite, most useful belongings. It's expensive and I probably wouldn't have purchased one willingly, so I am grateful to her. I'm very particular about my teeth. It's important to me that they are white, because my smile gets well-used. Dental health is important too, since I'm only ever going to get one set of teeth. Well, let's hope I don't end up with the removable kind when I am an old lady.

The Observer comes home today. Just thinking about that makes me smile.


Sunday, August 10, 2008

Warmness on a damp day...

Last night I saw so many people. My friend and I went to a reunion for the Independence Program. We go each year and it's always different. Having been to Ryerson twice this week, I knew my way there, but we got soaked. We were laughing, so now we made a memory. It was good to catch up with people who I hadn't seen in so many years. I felt old. There were about six friends I really miss who I got to chat with, which made the whole evening worthwhile. Everyone seems to have matured. Time does that. For most of us anyway. A few of my friends got choked up talking about Ian, who we all met at the program. It has happened every year since he's been gone. It's healthy and touching that he means so much. Hopefully Ian knows that he matters, even if he can't be here.

We chose to take a bus home. The rain had passed, but I think we made a wise choice, especially since my neighbourhood can get a bit seedy at night. Being home around ten, we thought we'd venture out and go to a coffee shop or bar. First we went into a coffee shop, but they were just about to close, so we tried a bar. A big, muscular bouncer greeted us at the door and asked for my age and identification. I knew we weren't getting in. I don't have identification. Truthfully, I wasn't all that disappointed. Bars aren't really my scene; coffee shops are. We ended up going to the Golden Griddle where my friend had tea and I had hot water with lemon. It was a cozy experience and it warmed me up -probably better than any drink at a bar could do. Sometimes it pays not to look my age.

Today was a rainy, dreary one. My friend and I went out for breakfast. It was nice to do something different. I'm always home for breakfast. We decided on a restaurant called Rich Tree, a self-serve cafe. I had toast, which isn't too exciting, but I enjoyed being out and about. Hopefully my friend did too.

Given the rainy weather, we opted to see Sex And The City at the theater near my apartment. My friend really enjoyed it. I did too, especially the second time around. It's such a chick flick. As I watched it again, I realized how fortunate I am that the Observer was willing to go see such a female friendly movie. What a sweet guy.

Speaking of the Observer, I really miss him. Friday was the last I heard from him. I wonder what he is doing right now. Today is the wedding, so maybe he is dancing with family, kissing relatives or eating anti-pasto. Whatever he's up to, I hope he's having fun. I'm looking forward to the Observer's return. I enjoy spending time with my friend, but I miss the Observer's company, affection and laugh. He's one of a kind.

I have amazing people in my life. I may not look twenty-five, but I have been around long enough to understand that spending a rainy Sunday at the movies with a friend is something to be thankful for.


Saturday, August 09, 2008


A good friend is coming to stay over at my apartment tonight. I'm excited. It looks like it's going to be a nice day.

I'm looking out my window at a disheveled looking girl smoke a cigarette. It appears like she just got out of bed. Her hair is kind of hap-hazard and she's wearing running shoes and a skirt. To me, those don't go well together. Running shoes are casual wear and skirts are more fancy. There are exceptions, but it's a bit like not being caught in limbo between going out to dinner or to the park.

Lots of people I'm watching walk down the street are carrying a paper in one hand and a coffee in the other. I sometimes see the paper replaced with a cigarette. I just finished two delicious cups of coffee. They were perfect. The person who made coffee for me is a coffee drinker. I can usually tell because it tastes extra good.

I have seen a few little birds on the window-sil of my sun room. They are so cute. I enjoy watching them. I try to be still and not scare them off. They look so fragile, but I bet they are tough in their own way.

The sun just went back in. Now it's raining. Hopefully not for long. I see umbrellas and I hear the swish of car tires hitting the wet roads. I need to go out and run two errands. My paper towel supply ran out and I want to get a sweet treat for my friend. There is a funky candy shop down the street from my apartment, so I think I'm going to get her some Jelly Belly jelly beans. She's a candy girl, so she'll like them. Who wouldn't? There are so many flavours.

Well, I'm off to be drizzled on. It's worth getting a little damp for a good friend and some gourmet jelly beans.


Friday, August 08, 2008

Sweet messages and a salty after-taste...

The Observer is away for the next three days at a family wedding in New York. He's been looking forward to the trip since it was first planned two years ago. I miss him. He is probably going to have a great family filled weekend and that's very important. Those kind of events don't happen all the time, so we should cherish them when they do. The Observer just called to say he and his family arrived and their hotel is great. A great place to stay will play a big part in the overall trip, so at least everything is off to a positive start. When one of us goes away, we usually text each other. It's the only time I text. It's a little exciting to turn on my phone and see I have a message from the Observer. In this way, I love technology, but I'm not a text addict. I only text if I am away from the Observer. Other than that, I would prefer to see my friends and family face-to-face or talk on the phone. It's a novelty to me, because I only text if there is a reason. We usually go to Starbucks on Friday nights. I was there alone last night, so I don't think I'll go back tonight.

This afternoon I went out for lunch with a family friend. I enjoyed seeing her. She's one of those people that I enjoy spending time with even when I'm grumpy. I can't help but feel revitalized when I see her. Everyone needs a friend like her. We both had grilled cheese sandwiches with bacon and tomato. The whole meal was very salty, but yummy too. Bacon is not something I often eat. I suppose when we are in the company of a special person, it's okay to treat ourselves to something we rarely have. I left my old friend with a smile and a salty taste in my mouth, which was pleasant. Sweet and salty really do mesh well together.


Thursday, August 07, 2008

When we're young and challenged...

Tonight I listened to a group of teenagers talk about frustrations in their lives. The topic of the night was communication, which is quite broad. We started off by each naming (and in some cases demonstrating) a talent we posses. This very fit, attractive eighteen-year-old guy showed us how he can flex the muscles in his chest to make the letter "T". I couldn't take my eyes off his chest. Whoa.

Every person in the room including the facilitators had some kind of disability and it created some unity. There is something so empowering about sharing with people who actually live the same struggle as you every day. It's healing and rare. Imagine how awful life would be if we were all alone and struggling? To be understood is to be validated.

We discussed people who make unfair judgements because they don't know better. We debated whether it is better to be treated the same or different than others since we are different. This turned into a big, heated debate between two guys who clearly don't along and would use any excuse to rip each other apart. Luckily, their arguing was stopped. We agreed on how frustrating it is to have prove yourself every day in such small ways. We showed them that, even as grown adults, we still face the same pressure to prove and it doesn't change. I don't know if this was encouraging, but it's real. We could all relate to how isolating it feels to be excluded from social activities due to inaccessibility or ignorance.

After three nights with the group, I get the hunch that some don't see eye-to-eye and they aren't all friends. When fourteen teenagers are thrown together for three weeks, there is bound to be conflict. After tonight, maybe they realized that they have a little more in common than they thought. I will certainly remember watching the dude flex his chest muscles. I may be older, but I'm not blind...


Wednesday, August 06, 2008

Thirsty for one thing...

The Observer was so sweet today. He's never not sweet but he did something that warmed my heart. I was thirsty all afternoon, but tried to ignore it. I learned this isn't possible. We had frozen yogurt, which helped for a short time, but I couldn't stop thinking about water. I hadn't had my afternoon coffee fix. I thought maybe giving into my caffeine addiction, my thirst would quenched. At the coffee shop, I asked for a coffee over ice and asked them to put skim milk and two sweetener - just like I have my hot coffee. The barista said they never advise putting milk and sugar in iced coffee. Excuse me. If one is paying for a cup of premium java, should he or she not be allowed to put whatever is desired? I didn't see the point in arguing, so I just had a hot brewed coffee as she advised. Who knew there is a coffee drinking protocol?

After the first sip of my hot Irish Cream coffee, I knew it wasn't going to do it. I did think of asking for a glass of water with ice, but given how sticky the girl became over iced coffee with milk and sugar, I didn't want to push my luck. I was still very thirsty. The Observer offered to go get me some water. Normally I would say "no" because I'd want to do it myself, but not this time. I asked him to ask for a cup with a lid and a straw. Isn't he awesome? After three minutes later, the Observer came outside where I sat with some, delicious, refreshing, cold h2o. The first sip kicked my Irish Cream coffee's bottom. It was heaven.

I learned today that when my body needs water, nothing else will do. Having a special guy to get it for me is a sweet bonus too.


Setting one's own path...

It's raining. I can hear the drops hitting the window and car tires sloshing on the road. There is a rhythm to the way the drops hit the window. It's two or three "thunks" in a row and a break. It's grayish outside. Gray skies usually mean rain. I have to wheel to Ryerson in about half an hour. I hope it slows down........

Well, it's evening now. I made to Ryerson and only got a bit wet. A little rain is good for the soul. It's humbling. No matter who we are, where we've been, or where we come from, we've all had the experience of being in rain.

It was fun to hang out with teenagers tonight. Unlike the meditation session on Saturday, I had a chance to talk to the participants. They remind me of myself eight years ago. I thought I knew a lot but really I knew very little. Life was just beginning. I was only eighteen, but I thought I was so mature. Now I understand that life is complicated and unfair. On the flip side, it's a big exciting question mark that is our responsibility to answer as best as we can.

We talked about planning for the future and setting goals. It's important when we are young. Goals propel us forward and give us an aim. I accomplished some of the goals I set at eighteen, but most changed. The two major ones that happened were that I made it to university and I moved out. Both events didn't happen in the order I panned, but they happened, which is what counts I suppose. The way I feel about people, behaviour and happiness is different. When I was younger, I lived more for others, but now I'm able to articulate what I want. Age and life experience helps.

Teenagers have so much to see and do. There is no way they can know just how much is ahead for them. Maybe none of us do and maybe that's for the best. Growing up is a blessing, but it's very hard too. Being at the middle part of the road, I wouldn't want to go back to the beginning. I know that life can be unpredictable for all of us, but a plan does help. It's reassuring to set out a path. Even if none of the plans any of the youth in the program make take shape, I hope they find good wherever they end up.


Monday, August 04, 2008

An exciting and yummy long weekend ritual...

Today was fun. The Observer and I have a tradition of hanging out on holiday Mondays and spending the afternoon outside. We usually go on adventures exploring the area and seeing what we bump into along the way. Some would call that getting lost. To me, it's a big adventure. I find it thrilling to locate a place I didn't know existed. Now that I live in the middle of everything, I am intrigued to learn how much is at my doorstop or within my reach. I don't think the Observer shares my need for exploring, but he comes along and never complains. I'm very lucky he's so easy going.

Every holiday Monday since summer began, we've gone to a classy Italian restaurant in a quaint little neighbourhood. The atmosphere is peaceful, the service is always pleasing and the food has never disappointed. The menu includes foods that the Observer's mother often cooks, which is comforting to both of us. Traditions like these are special to me and I'll remember them when I'm an old lady.


I love....

* How good health makes me appreciate everything about living

* My family

* My bare headed Observer

* Holiday Mondays when we go out for dinner and to Starbucks

* Late night adventures (as long as they are safe)

* A good hot shower any season or time of day

* Catchy songs

* Trying new things

* Good bread

* Talking to my Dad and Mom in the morning

* The new puppy in my family

* Kissing

* Summer nights

* A mindless and entertaining book

* Babies, teenagers and the elderly

* That we are more the same than we are different

* A good sleep and how it changes one's perspective