For The Love Of A Good Story

When I was a young child, I loved to read. It helped that my parents were avid readers and taught me to love a good story. A book, it was reasoned, was portable entertainment that would take you into a whole other world if you let it. And let it is exactly what I did.

I loved to read, it was as natural to me as breathing, expect breathing is one of those things we do without thinking. At some point I had to learn to read which required thinking, so perhaps in reality reading was more like walking to me. Once I learned the basics, mastered the whole one foot down in front of the other I was off and running, erm reading. I was unstoppable.

Birthday and Christmas requests always, but always, included at least a handful of books. Don’t worry about what “reading level” they are designed for either, I was reading well above my level because my parents also taught me that if you are interested in something, you need to know more about it. My interests tended to run to things that had books written at a higher reading level than my age said I should be reading at. This left me with a choice, I could either read the books that were meant for my reading level based upon my age, or struggle a little and learn more. I opted to struggle and learn more.

Because I took to reading like duckling to water, I am completely at a loss when it comes to my godson. He is reading well below the “normal level” based upon his age and grade. He has been tested for learning disabilities, eyesight issues and what must seem like a million other things. There is, according to the experts who have tested him, no reason why he isn’t reading as he should be other than he is being stubborn.

My girlfriend is at the point of pulling her hair out as she watches his reading skills slip further and further behind those of his classmates. Her husband isn’t puling his hair out over this, mostly because he doesn’t’ have any hair to pull out, but also because everyone knows little boys struggle with reading. Or rather that’s how the saying goes.

It has been suggested that for this school year the child be placed in a remedial class, just so that his esteem won’t be damaged by his low reading skills. It has also been suggested that he be taught the consequences to his lack of reading skills, such as the type of job he can expect to get since he wont’ be graduating high-school.

Given that he is currently in grade three I think this might be a case of assuming you threw the baby out with the bathwater before even checking to see if the baby is in the water in the first place. There is still plenty of time for him to learn how to read, time to cultivate a love of stories. And it isn’t as though the child doesn’t have an imagination because he does.

So in order to help my friend out, I asked my godson what it is about reading that he finds hard to do. I expected it to be something like those tricky silent letters like the B on the end of numb or maybe when two letters put together make a different noise, like the ph in phone sounding like an F. But these do not trouble the boy in the least. What he finds hard to do is that he must sit in a chair to read.

The child doesn’t want to sit in a chair to read. He wants to read in a more comfortable position, but school provides only desks to sit in. And his parents insist he do his homework and reading at the kitchen table, which means sitting in a chair again.

He asked me to climb a tree with him, we didn’t get up too high, and he sat there and read to me. With the only struggle being how to climb the tree while holding the book. Of course school will never see this. School has rules about when, where and how the reading must take place. He must learn to conform to these norms or he will be labeled and left behind. But why does he have to sit in his desk to read? Why can’t he sprawl out on the floor and read given that school is there to teach him. Teach him how to read, don’t worry so much about him having to sit a certain way in his desk I say. Let him have a world of stories and books open up for him first, and then work on the sitting because he does know how to sit and will figure that stuff out as he goes along.

With Open Eyes And Heart

Friends of Beloved recently adopted an eight year old boy.  His biological parents had placed him up for adoption because they couldn’t handle life with him anymore. And they wanted to provide him with a better life than they felt they could give him.  Alan, they learned, was a low functioning autistic child.

Low functioning as in not able to take care of his own basic needs, or life skills.  Low functioning as in they didn’t offer a lot of hope for him.  Non-verbal as in incapable of speech and communication in the normal way. Not silent, not in the least.  He makes noise.  He just doesn’t speak.

Beloved’s friends, we will call them Lucy and Ricky, were told not to adopt Alan.  That Alan would be best served in a hom.  With people like him.  As though he had been written off already.

Lucy and Ricky were undeterred.  Their positive outlook told them they oiled learn from Alan and help him.  If nothing else they could provide him a nice home and hordes of therapy and fun.

In the short time Alan has been with them, he has come out of his shell so to speak.  He seems to enjoy finger painting and their house displays his master prices.  Some of the art work shoes interesting textures and colors.  But it isn’t all rainbows and sunshine, and I would sign Alan up as an artist just yet.

Lucy and Ricky admit it’s a long road ahead of them.  One full of tears and frustration as well as joy and learning.  Beloved asked them, if they knew then what their lives had become now, would they have adopted Alan. Without hesitation they both said yes, because despite the hard work, frustration and fun, they believe everyone is worth a home life with adventures and working to each person’s highest potential.

Invitation To A Lupus Party, Sort Of…

Beloved headed out for a small gathering with friends, taking the puppy with him and leaving me with the whole house to myself.  A still and peaceful house.  A house where the doors can be left open and items left on the floor with no fear of a four-footed terror examining things with her mouth.

Ah yes the joys of puppy-hood! 😊  Not a sock, not a sheet, nothing gets past her keen eyes sight and exploratory bites.  It makes the days we do the beds a little more entertaining to be sure.  But it’s not change the bedding day in the house.  No, that’s not why Beloved left me alone in an empty house.

Our friends had planned this gathering months earlier.  A birthday celebration combined with the celebration of a PhD awarded.  A low-key affair where children of all kinds are nvited…yes including the four-footed kind.  But not low-key enough to allow me to show up in bed, which is basically where the bulk of the day has been spent.

You see lupus is having a celebration all,of its own.  The location?  My body.  The theme?  Mass pain and inflammation.  The antidote?  Meds in mass courses and rest.  Hordes of rest.  Hence the not going to the party.  Hence the staying in bed with meds.  Hence the puppy going to the party with Beloved.

Speed Bumps and Marathons

I was run over by a truck today.  A massive gravel truck with an extra full load.  I believe it ran over me and then backed over me for good measure.  After that I lost count of how many vehicles used me as an annoying speed bump, barely slowing down as the ran over me too

I always thought, or rather Bugs Bunny cartoons taught me to expect, that when you get run over you’d simply become flat like a pancake. And of course through the luck of animation you’d be a bit like an accordion, all folded up.  But basically you’d come out okay in the end.  At least that’s how Wylie E Coyote was impacted.

But my friends that’s not at all what this is like.  This is unending pain, unyielding exhaustion and loss of energy. Before you become outraged and demand to know the trucking company who left me a boneless, mangled mess, settle down.  You see the trucking company was hired by lupus.

Lupus paid the driver to take an extra heavy load and hit me at high speed.  Probably paid out a bonus for he backing the truck back up over me before taking off.  The added cars that used me as a speed bump were just an added, unpaid bonus.

I think I may have used up my allotment of energy with this post to be honest.  But this is temporary, this pain and exhaustion.  I may not be like an accordion, but I’m like a runner who finds her second wind when it seems she can’t run another step.  You see lupus and I are running a marathon.  And while I may not always be ahead, it is a long race and I will come out winning this one.

Class Timing

Some people are always early, some are always late.  Some people are always right on time and some are a mixed bag of these three.  Despite the best laid plans and intentions things happen that are beyond our control making us late.

I understand life getting in the way now and then.  I understand being a little early all the time, after all that tends to be my style.  I don’t understand how people can always be right on time and not a second early.  And a whole new mystery to me is the person who is always late.

I do not understand always late.  I do not understand how you can plan to be always late and not care how that impacts others.  I do not understand ow someone can be oblivious to anything beyond self-interest etc.

With classes starting up I’m curious which percentage of students will,be early (hopefully not super early) and which will always be late.  I’m also curious if this will be the semester where I finally step beyond labelling the students as self-centered (typically assigned to the late comers), responsible (slightly early), or keeners (those super early people), and see them just as students.  What difference does it make to ascribe labels to these students just because when I was in school one of my professors verbalized this and stressed what he thought of people in each of these labels.

See semesters aren’t just fresh starts for students, they also offer fresh starts for the professors, instructors, facilitator or teachers.

Here, There And Lists In Between


Beloved’s niece has decided to create her bucket list now, just in case she should become ill with something like the cooties from touching a boy (she is six after all). This is her response to learning her aunt is dying.

Beloved, upon hearing about the bucket list of such a young child, wondered out loud if it was the right thing to do. To tell a young child about death, and to do it in such a way that the young child feels the need to create a list of things she dreams of doing before she dies.

The thing is, we all face death in our own way, just as we grieve in our own way. What we want from life varies too. These ideas and concepts can very within the person as s/he ages. So the list that says eat an ice cream while on the top of the world may be altered to eating an ice cream with someone important in your life every chance you get.

Society, most certainly western society, has done a good job of making death something less than part of the life cycle. There was a time when people were closer to death. It happened, bodies laid in rest in people’s houses for visitations and so on. We didn’t hide it, pretty it up or anything of that nature. Now death is something to be feared as we have moved it from the world of knowing to being a mystery.

We have also created a whole industry around defying death, through various attempts at immortality or at least longer lives. It’s the norm now to not look your age. We see fifty year olds with vibrant, glowing, tight skin. They have brilliant hair and a body in the shape of a younger person. The fifty year old who decides to go the natural route, allow hair to grey, skin to get wrinkled, a body to soften with experience is suddenly the one on the outside. And we say things such as “boy s/he looks old”. We forget that the person doesn’t look old, rather the person has simply taken on the biological appearance combined with the life experiences of someone who is of a certain chronological age.

I don’t have a bucket list. I figure if I have a list of things to attend to before I die I’m not necessarily living in the present and making the most out of the moments I have. But that’s just my way of thinking. Do I have a list of thing I’d like to do during my life? Sort of. But if they don’t happen that’s fine and I’m not about to chase after them just to get the filled either.

Do I have an issue with a young child (or anyone else for that matter) having a list? Nope not at all. As I said we each face life, death and all the living in between as best we can as individuals. We have our own meanings to a full life, a purpose filled life, a meaningful life, what we want out of life. And we must acknowledge that death is another thing that will have different ideas and desires when it comes to each of us. There is no real right or wrong way to approach these things, provided we aren’t harming anyone else.

Choosing an End

Beloved’s dear sister is dying.  She has been given a timeframe to get her affairs in order and such.  Of course the same specialist told her that the timeframe is based on of data and compiled into an average so she may exceed the time provided.  What wasn’t said is that it’s possible she won’t make it to the end of the timeframe provided.  Frankly does any of it matter?

Beloved has been spending time with her, just to sit and be.  To provide comfort and to draw comfort from the simpleness of having her with him still.  He reads to her, shares the news with her and sometimes simply sits by her while she rests.

This has me thinking about my own end as well as Beloved’s.  Not that I’m planning a demise any time soon as per say.  But I’ve been thinking about the how of the death for us.  Will it be long and drawn out?  Will it be a slow process where we are aware of every passing tick of the clock.  Or will it be fast and sudden.  How painful will it be?  Will it be filled with fear, regrets or peace?

I’ve spent time seeking death with dignity for all.  Not as a means of dealing with populations, but allowing people with chronic illnesses to choose how the end comes.  I know the complications, and potential death experiences that come with lupus.  I’ve always wanted to choose how much would be too much when it comes to poor quality of my life, pain etc.

I’ve never wanted t be a burden to anyone either.  I’ve always thought I’d just go away and face death on my terms, my way.  But as much as the death is our own, it is a so what shared experience until the end point.  And now the end point itself seems to have become an event for some people.

What I do know,as far as my death goes, is it won’t be an ending with regrets.  It won’t be a sudden realization of all I’ve never done.  I’d like to think it won’t be horribly painful or filled with lots of people.  I hope I enjoy the time before the end comes, not just existing.

And e thing is, dear readers, if you want to have a day in how you die, you need to start considering the end long before it comes.  Even then ere are no guarantees, but you can have a plan and some steps to take to head down a certain path.  We should have conversations with our loved ones while things are good, to ensure they know our wishes and we understand their needs.