Monthly Archives: July 2016

Autism: Learning to Drive

Though my older brother rushed out right away, owned his first vehicle, and was driving as soon as he was allowed, this was not something that was of interest to me. In fact, it downright terrified me. Yet shortly after my sixteenth birthday, I went for my first written test, joined driving school, and within a year had my license.

It wasn’t something I wanted to do, but since Graduated Licensing was about to come in, my mother insisted it was something I had to do. So I did.

I passed the written test without issue. On the second day of driving school, my instructor had me drive in the busiest part of downtown, in the very large city where we lived. There were cars, buses, and people everywhere – and something like four lanes of traffic in each direction. Aspie nightmare!

“Look at this,” he said, “did you see the bus?” “watch the people,” “did you notice…”

I was strongly headed towards meltdown, the tears silently streaming down my cheeks – but I had to make it home. “I hate this!” I thought, “Never again!” Somehow I made it through the lesson, but everything from that moment is blocked from my mind. I fell apart in the privacy of my room, and of course, did continue my classes. After all, my parents had paid for them, and always the pleaser, I didn’t want to disappoint.

In a further lesson, I was taken onto the highway. Strangely enough I found I didn’t mind highway driving quite so much as city driving. Though to be fair, he didn’t take me to the busy highways with Toronto traffic, but on a relatively quiet highway going in the other direction. I found it easier with the larger spacing between vehicles – which all flowed in one direction – and no pedestrians!

On the day of my test, just as I was driving down, I passed a dead cat on the road that had been hit by a car. I cried at the power to kill that comes with driving a vehicle, and very much did not want that power for myself.

Despite my very strong anxiety and dislike of driving, I only made one mistake during my test. Instead of checking my side windows after I had put the car in reverse, I checked the one side just before. And just like that, I had my license. I had no vehicle, no job, no money, and no desire at all to ever drive again. The bus system in that city was really good, and inexpensive. I either used that, or walked, for the city was quite flat and good for walking.

Seven years later I moved across the country to a small town, where nearly every street was rolling hills. The townhouse I was renting was nowhere near grocery stores, or anything else that I needed (except the community pool, which was nice) and there were only a total of three buses in the entire city. We couldn’t walk. The buses were impractical, and the trips long – leaving me with bad motion sickness on every trip.

So we (my mom moved across the country with me, but then my father was diagnosed with cancer a couple of months later, and my mom had to move back to take care of my disabled brother and very sick father) leased a vehicle. Seven years after my driving exam, I started driving again.

Sixteen years later, I am still a very anxious driver. I still hate city driving, and prefer quiet highways. Though eight years ago, my mom and I took turns driving across the country and back, I still refuse to drive in my hometown (or anywhere near Toronto.)


I even learned to drive standard along the way. But make no mistake, I still hate driving! There is too much unpredictability along the road.


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Autism: Successful Learning

When I was about 12 years old, my Sea Cadet corps offered a cooking course. At the same time, I was taking home economics through my elementary school. Cooking and baking was something that I really enjoyed doing, and I did achieve honours in school for this course.

While it was something I really enjoyed doing, and in cadets was with people I really wanted to be with, I still can’t say that I learned much in these environments.

As I have mentioned in previous posts, I really struggle with the feeling of being watched. This was true of me then as much as it is now, though at twelve, I didn’t understand why. I not only had trouble being watched, but I have also always had trouble with food issues, as well as eating in front of people. All of these… handicaps, I suppose, for that is what they are… made learning in group situations next to impossible.

At this point in my life I only remember learning how to make french onion soup in cadets – mainly just how the onions burned my eyes as I was cutting them – and how to make chocolate Christmas suckers/pops in school. I am sure that I learned much more than that, and that my enthusiasm showed, for my mom bought me a large box of baking supplies that Christmas. She also put me in charge of cooking for my grandfather after my grandma had a heart attack the following summer.


So I must have learned something. However, the stress of the environment carried on even into my memories of that time. I remember who I was with, but I hardly remember what I was supposed to be learning – and it isn’t even that I didn’t use those skills after.

Yet when I moved out on my own (at the too young age of seventeen – again related to stress) I had no idea what I was doing in the kitchen, and couldn’t even call upon memories to help me out, for in this area they were completely blank. I remembered the people I very much wanted to be with (in cadets anyway. In my memories of school, they are just faded, fuzzy shapes of people that are hardly even there at all) and I even remembered the environment, but the skills are just gone.

This is true of so many things that I have done and learned that I begin to wonder if perhaps the place where I am learning has more impact than any other detail in whether I actually can learn well enough for it to make a difference.

It wasn’t until I was fully alone, in my own kitchen, with only my young son around that I was actually able to teach myself how to cook… and again, that is true of pretty much everything that I know.

It seems in order to learn, I have to be on my own, and I have to teach myself. So much for the school system…

I see that in this, though in little else, my Autistic son is very much the same as me.


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Autism: Mind Set on Repeat

As I write this it has been four weeks to the day since my dog died, and I am still finding it difficult… almost impossible, really, to think. So each day I come to write my blog and all I can think of is how hard it has been to have lost him, and to wonder whether my new dog will be content here.

Certainly this is not of strong interest for my readers – yet what can I do? More days than not I stare at my computer screen, or at the paper I am holding, and nothing comes out.

I am obsessed with things that I cannot change, and brought to my knees by things that many people experience. To love and to live means to experience pain. No one wants that, and I recognize that it hurts most people deeply.

The difference is they are able to learn to live with that loss, where I fixate, and obsess, and am incapable of looking or even thinking beyond the experience which has invaded my world. Since I am incapable of functioning, or thinking, or even trying new things during these times in my life, every attempt to do something real – to interact with the world around me – results in failure.

For in these moments, days, years, I do not feel like I am part of the world. I see it. I hear it. I feel it. But I am not a part of it. It even looks different to me, as if I am seeing it through a screen, or looking through a dark veil. It sounds different to me, too, as if I am listening to a recording and not to what is happening right now.

How am I supposed to respond to a world that doesn’t seem real? How am I supposed to interact with a world that causes such pain? How am I supposed to write, and work, and be, and do, when my mind is set on repeat?

I wait. I pray. I focus on my new dog – for she alone is able to change my focus. And I hope that I will not upset or offend people during this time to the point that when I do get beyond the moment, I would be ashamed, and they would be lost to me.

Extended grieving in an impatient world. I can only hope they understand.



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Autism: When I am Watched

“Didn’t your parents teach you to cut your meat?” they asked as I sat in front of them with a fork and knife in my hands.  I don’t remember, I thought.  Maybe not.  All I knew was that the knife felt awkward in my hands, squeaked across the plate, and wasn’t cutting very well.

fireplace me

They must have taught me, though.  I was eighteen and living with my boyfriend’s parents.  A Hungarian/German family that loved cooking, and loved food.  Being a picky eater with extreme sensitivities to taste, texture, and type of food, plus a strong difficulty eating in front of other people (they always ate together at the table) made it very difficult for me to show them I appreciated what they were doing for me.

After all, I was very much starving before they allowed me to move in with them.  But there were foods I couldn’t eat (many I still can’t eat 20+ years later) and I really struggled to cut my meat.

Now that I know myself more, I can say with assurance that I likely could cut my food, and had been taught – I just couldn’t do it then, while I was at the table, with people so close, and myself being so aware of every movement that I wasn’t able to think, function, or even hold a knife.

Even now after many years of experience and over twelve years of marriage, I struggle to hold utensils when even my husband is close to me.  It isn’t like he is a stranger or anything, but that feeling of being watched seems to reduce me to struggle with even the basic of tasks.

It isn’t that I can’t, or that I won’t, or that I am seeking attention by pretending to be helpless – it is that in certain situations, my focus shifts to the point where I can’t think of anything else but my own awkwardness – which has the pleasant effect of causing the very thing I am trying to avoid… embarrassment.

Afterward I want to defend myself.  It isn’t like I can’t do these things – and I certainly don’t want people to think of me like that… yet in that moment, in that situation, truly I can’t.

I would like to say that I am getting better at this, but I still struggle with it most of the time.  It is the reason I need to work alone.  It is the reason that when we were trying to adopt our children, having the social workers watching everything caused me so much stress.  It is the reason I often fail when I am around other people.

I have even found that it isn’t just when someone is close enough to watch that this is a challenge for me.  It is also as difficult if I think someone might be listening/watching (such as neighbours outside, even if what I am doing is in).  It is even as strong of an issue if while I am doing… whatever… I so much as think of a situation when that might happen.

My functioning drops, and what I could have done well if I was alone, I can no longer seem to do at all – and that leaves me feeling inadequate and ashamed.


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Autism: The Right Choice for Me

I haven’t been out so much since probably last summer when we were camping.  It isn’t that I haven’t wanted to, but…

  • neighbours
  • allergies
  • routine

How quickly I forget how much being outside calms me – when it is quiet and peaceful, that is.  If there is one thing I need right now, it is calm, for my anxiety has been extreme since the loss of my dog.  It keeps coming back to that.  I am sorry.  I do fixate.  That is, if nothing else, a consistent trait.

Gryff used to enjoy going out into the yard alone.  I went along for his evening walk each day, and sometimes more, but I only stayed in the yard with him if I had something to do.  Not even then.  He didn’t mind me being there with him, and he even liked it at times.  But he was an independent dog, and mostly he didn’t care.

Summer 2015 016

Not Clara, though.  I doubt I would even feel safe leaving her out alone if she wasn’t so scared, and so new.  She really is a tiny thing – smaller than my Pomeranian.  Smaller than my cats.  Smaller even than my rabbits were.  We have eagles, and crows, and… well, she is so small, even cats might be a danger (not mine – they get along fine!)

Clara doesn’t like to be alone.  The first few days, she was scared, and hid in her corner – but in the room where I was.  In those days (as if they were so long ago, and not just a week past) she would sit right next to me when we went out, trembling in fear.

Clara June 23 002

Now she has become my shadow – partly due to her personality, and partly due to me training her to come to me, and not be afraid when I moved around.  So out of necessity (and good weather) we have been spending several hours outside each day.  Mostly I have nothing to do but to sit and watch her exploring her world.  It is so quiet and peaceful, and I am thankful for this.

As for my routine – with death and life, my anxiety is high.  Thinking, functioning, maintaining my routine… all are impossible for me right now.  Even writing these blog posts have been especially hard these past few weeks.

At least I have this, and it helps me to know that though it was my own desperation that brought her to me, and much too soon at that, adopting Clara was the right choice for me.


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Autism: A Year Off Work

It has been a year since I was suddenly taken off of work. I didn’t ask for it. I didn’t even expect it. When I had gone in to the psychiatrist, I knew that I would need a lot of help in order to ‘keep going,’ as I had been close to break down for months – and the anxiety was extreme.

Every time I went in to this job that I did well at, this job where I knew I was appreciated, I felt like I was about to face a firing squad. It was bad. And I knew that I couldn’t keep going as things were. I knew that getting a different job would not help, as I had a decent job already. So I hoped the psychiatrist would.

Though I had never had success with anti-depressants, or any such drugs in the past, I thought maybe if she knew of my Autism that she would be able to prescribe something that would work. I was desperate, and so I was willing to try – despite the debilitating side effects I had always got before (and got again on all she tried this time.)

When I was taken off of work, I felt ashamed, and guilty, and… I didn’t ask for this. I didn’t ask to be taken off of work, put on medical EI, put on federal disability. I didn’t ask for this.

In the beginning I fought it – after all, despite my severe anxiety, awkwardness around people, rigidity, sensory issues, food issues, bathroom issues, low energy, back problems… despite all of that, I was a good worker. It wasn’t like they were about to fire me or anything. I did a good job, though it cost me a lot. How could I then go on disability?

For many months this was very hard on me. If only they could find me a job that… I often thought – but they said, “you need to heal.”


It was hard. Not because I disagreed with them – I had known the truth of their words all of my adult life, and throughout all the jobs I did. I knew they were right. Still there was that expectation. Always that expectation. I am a people pleaser. I don’t like people to be upset with me. I don’t like people judging me. And this? This was big.

A year later, I still feel that expectation – from those I know couldn’t understand what it cost me to be working. I hid it well, but it cost me a lot just the same. I still feel that expectation, and it hurts me. However I also know beyond a shadow of a doubt that I am not ready to work again. Maybe someday, maybe never. But what I know is that right now, learning to live is hard enough, and I still haven’t any more to give to the world than I am giving right now.


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Autism: Stess on Functioning

I suppose that when anyone is under a lot of stress, they don’t function at their best. For me, however, I might as well say that I don’t function at all.

  • I can’t think.
  • I can’t focus.
  • I can’t make decisions.
  • I have little impulse control.
  • My anxiety skyrockets.
  • I can’t cook.
  • I rarely clean.
  • I can barely move.
  • I cannot speak.
  • I cannot hold a conversation.
  • I can’t follow directions.
  • I forget most of what I know.
  • I fixate on the issue.
  • Nothing exists beyond right now, and right now is hard.

Of course this is somewhat expected, for a short time at least, when something really bad happens. Lost your job? Okay. Going through divorce? Okay. Death of a close family member? Okay. For a while. Okay. Only people forget really fast. That, or they expect grief to be brief. For a family member (human at least), who is very close, they may even give time off work. A day. A week maybe. Then you’re expected to be right back at it – as if your world didn’t just fall apart beneath you.

And like everyone else, I grieve during those times. The stress is hard. I don’t function well. But it seems to be much harder for me to overcome those things. It takes a lot longer, and I just don’t pretend well.

The summer my first cousin died, my dog died, my grandfather had a heart attack, and went in for a triple bi-pass, and my son’s father and I broke up… that was a hard summer. My son was 14-17 months old during that time. My little cousin, that I was babysitting, was 7 months younger. I had always been good with babies.

Babies and animals. That was my thing. But take all of the list above, with all the major stressors I was going through at the time, and add in two babies… I didn’t do well. It was hard to even stay awake, let alone supervise well. They both survived that summer. I am thankful for that. But I didn’t do well, and it took me years to get over it. Even the stress of that time took me two years to get past. Two years in which I was in deep depression, and afraid of everything.

Two years. My aunt and I both had to start work again right away. We had to, but I shouldn’t have. Expected, but not right. Not for me. And I didn’t do well. Not for a long time.

It isn’t just the negative stress in life that effects me that way, I have found. When I got married, I took a week off. I should have taken a month. I was babysitting then, too. Nothing bad happened, but I certainly didn’t do well.

Or there was the rather neutral stress of coming home from a three month vacation to visit family with my four children in tow. We were happy to be home, but it was a transition, and transitions are stressful. My younger three and I, and especially my middle daughter, had such a time with that transition. It didn’t help that my guinea pig died within days of getting home, though he wasn’t yet a year old. Her stress, and my stress lasted five weeks – at the end of which, our adoption fell through, and ‘our’ three younger (foster) children were moved from our home. We got them back for a year, but we never overcame it.

I suppose, if all of us knew how I handled (didn’t handle) stress, we should have instead had a lot of help during those weeks. Then maybe we would have survived it.


For when I am under stress, I can’t function. It isn’t “if I try hard enough,” or “if I push myself through it.” I can’t. I can’t do it. And a day, or a week off isn’t going to help much. For me, it might take a month, or it might even take several years, before I am strong enough to live, or work, or be myself again. And that, I have found, is a necessity – not a choice.


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Autism: Change is Hard


What a year. What an incredibly challenging, difficult, painful year. I suppose there is much to be thankful for, but it seems to be drowned out by all that has happened. Although, to be fair, not all that has happened has been negative. It is just… change is hard. Change is so hard.

Six months into 2016, and what has it meant to me? First I was so sick for the first two months, that I couldn’t even sit up. That from withdrawal from a medication that was supposed to take a week to wean off of. I had my last pill two weeks ago, and am still getting shocked. It is only that the past two weeks have been so harsh that I figured now was a good a time as any to suffer the effects.

My psychiatrist and I have come to the conclusion that while it might be a life saver for many, medication is most definitely not for me. Although I had come to this conclusion in the past, I really had hoped that this time it would help. If it helped and lowered my anxiety, maybe I could work. Maybe I could socialize. Maybe I could not fail so much. But no matter what was tried, it didn’t work. It made things worse. Worse anxiety. Worse depression. Strong thoughts of suicide, where in the past while I might not want to live at times, I was more waiting to die, than actually thinking of ways to accomplish that.

The medication also made me really sick. So sick that even if it did help (which it didn’t) it still wouldn’t be worth it.

Well, then came March. For eight years my son hadn’t so much as trimmed his hair. Suddenly he wanted it gone. Gone, gone. So we cut it all off, and he didn’t even look the same anymore. Okay, so it is only hair. And it didn’t really matter. It is just… change.


Not only did he shave his head, when he used to have ringlets down his back, but he also lost weight. All of his life he was above the 95th percentile for height and weight. He hit the 20lbs mark by his four month ‘birthday.’ Yes, that is months! It wasn’t that he was overweight, just a bit big. He suddenly chose to put himself on a diet, and lost quite a bit. Probably it is a healthy thing, but he looks so different, and… change is hard.

Well, then my grandmother died. That was hard. That was painful. Suddenly, there were no plans for the future – just memories from the past. Suddenly it became too late to go back and visit her. I couldn’t even go back for the funeral, and that caused a lot of pain, too. Above that, there were those 16 years that I missed with her after choosing to move away. Regret. Pain. Change.


My aunt died a couple of weeks later and I thought, where do the years go? I was thirteen when she married my uncle. Fifteen when she had my cousin. At that point, both of my uncles children from his first marriage were alive – but not now. Cystic Fibrosis took them at 21 and 26 years old. My poor, poor uncle. His wife was only 55. What a sad world.

Then in later April, and early May, I started to settle a bit. I was enjoying trying out new recipes for my gluten free vegan diet. I was worried about this cough my dog had, but we took him to the vets, and he was on medication. Maybe we would need to try different meds to find a solution, but surely he wasn’t going to die! He was only 7. Only 7.

I feel like I’ve paid for those couple of weeks of happiness in the past two. For my dog did die. And everything was broken. And nothing in this world felt right anymore. Even all our routines were… wrong. The world became dark to me, and no amount of sunlight could pierce the shadow.


So because I had to. You do understand I had to, right? I got another dog. I thought she was a rescue, until just before they dropped her off. A rescue, in need of a home. But she belonged to them, and she loved them, and she doesn’t understand. I don’t understand, either. But we will grieve together, for though this beautiful girl is now mine, I still miss my boy. We will grieve together, and hopefully in time we will heal together. My Clara-bell, and I.

Clara June 23 002

And while I miss my boy, and she misses her family, neither of us had an option in that. In time, I think this will be a good thing. I love her already, and she will come around. But right now, it is change. And… change is hard.



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Autism: Too Soon

It is a necessity. This I know. The decision had to be made – do I seek life, or fade as I wait for death. The grief has been so deep, so strong, so pervasive, that it seemed even life isn’t an option. But it was a necessity. To live again meant one thing: I had to look for another dog.

So soon. So painful. Such a hard thing to face, and certainly one I did not want to be facing now. I wanted my dog – not some dog. I know that I will love another dog, care for another dog, bond with another dog… but what I really wanted was my dog. He wasn’t even eight. Too soon. Too hard. Too painful.


But in my heart I also knew that the choice wasn’t between my dog, and another. Mine was gone already, and much as I have begged for this to have been a nightmare, I know that desire would not bring him home.

Such a hard concept for anyone – death. Painful for anyone. But each death to me makes the world seem less real. Less friendly. Less beautiful. Not for a time – for always. Death, whatever people say, is not natural. Things were not supposed to be this way. And the animals…

It seems to me the curse for a fallen world isn’t so much our own death, but more the death of those we love. Our own death, while frightening (pain is scary) is a one time thing. Afterwards… But the death of a cousin, a grandparent, a child, a well loved pet… it is a pain that never really leaves.

As the tears slowed, the panic increased. Gryff was more than a pet. He was a friend. He was my strength. He was the children I couldn’t have. He was my confidence in going out into the world again. He was my voice when I didn’t know how to speak. He was so much more. And the pain and fear in being without him have been harsh.

So my husband suggested another dog. There was no question that I had to do this – I just wish it wasn’t necessary. Not that I don’t want a dog (please understand) but that I want my dog.

Puppies are cute, fun, playful, new… a whole bundle of energy and love. A puppy would have been great, but puppies are also expensive. Six years ago when we got our dog, puppies cost an average of $4-500. When I started looking last week, they were $1000+.

I posted an ad instead explaining my situation. Probably the longest ad on there – I am a writer after all. The response was overwhelming. I guess a lot of people are seeking new homes for their dogs. Sad. I would have given anything… anything to keep mine. But none of them were my dog, and I rejected one after another. Too soon. Too painful.

Finally it came to two dogs. One a 2 year old Keeshond, who had been kept in a kennel, and was very timid. I really wanted her. I cried, and I researched (a lot, as I tend to do) and I cried some more, and I even laughed for the first time since my dog had died. I was sure she was right for us. Even my son, who is afraid of larger dogs, wanted her. Keeshonden are like a larger breed of Pomeranian, descended from the same dogs – only they are about 35lbs compared to our Pom, who was 10lbs (and big for a Pom at that.)

I wanted her, but trying to pick a time and place to meet were proving complicated – and deciding on a price was a challenge, too. As I was waiting on their response, and still very much wanting to bring her home, I got another email from people with a 3 year old Chihuahua. They are coming into town this week, would drop her off at my home, and come back an hour later to see if I wanted to keep her. Easy.

The cost for either would be the cost of getting them spayed – but the price of a spay is different depending on where it is done. My vet – $245. The vet near the Keeshond – $400. The vet for the people with the Chihuahua (they are affiliated with a rescue) – $100.

But it is not price and ease that should be the deciding factor. What is best for the dog? What is best for us? When what I want is my dog, this decision is so much harder than it would have otherwise been. So many times this thought has brought me to tears. Oh Gryff, why did you have to leave me? I should have got another dog while he was still alive, maybe. Maybe. But I didn’t know he was about to leave.

So very hard – but I have to do this. I know I have to do this. Other people might say wait – but as I wait, the panic grows, and my ability to go out into the world diminishes. I need her. Whichever dog we chose, I need her. And I will love her, too. But right now? This is hard.


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Autism: This Pain

Do you ever read stories that are full of darkness and pain? Where it is not a matter of a few bad things happening, and lots of good – but more bad, really bad, and maybe… just maybe… a little bit of relief? People read those stories, and live them, and feel for the characters, and like them. A lot of people. Right now I am reading the Song of Ice and Fire books (Game of Thrones), and they are much like that. Not a lot of happy. A whole lot of tragedy.

Summer 2015 011

Yet when it comes to life… people seem to be okay with pain that happens to someone else, far away. Well, okay, “okay” is probably not the right word. But they take those stories, and they share them, and it gives them something to talk about. They might give money, or of themselves to help in relief. They might even grieve with the people. It is big. It gets their attention. Then they move on to other things. And in the midst, they live.

But people aren’t so great at personal pain. “I am sorry,” they say, and it feels empty. But it isn’t’ their fault. What the person really needs, they can’t give. They couldn’t even if they wanted to. “Let us know if we can help,” they say. But when what is needed is relief from a broken world, restoration with someone who has died, or was otherwise lost, healing from the intense grief… they can’t. They just can’t. Helpless, they walk away, and the person is left alone.

Alone to fight the demons that have invaded their lives, taken away the light, filled them with darkness and shadows. Alone.

And if the battle for wholeness lasts too long, they lose patience. And then the person feels more alone than ever – listening to people laugh, sing, hum, enjoy life – when theirs is still filled with a pain that others want them to forget.

“Surround yourself with positive people,” is the phrase of the day. And those whose lives follow more in line with tragedy than comedy are left. Alone. Lonely. Fighting battles they cannot win. “Drama queen,” they say. Maybe not to, or even about, that particular person. But the words are heard, and rather than accept the false label, they keep the pain to themselves.

Try “sensitive,” “hurting,” even “strong,” – you don’t know how hard they are fighting to give the smiles and laughter that you do see.

It seems that those most in need of comfort, are also those most often left to their pain. It isn’t the fault of those on the outside looking in. They don’t understand. They can’t help. And really, when what those struggling most need is a world that is not broken – well, things can’t really be fixed. Not here. Not by us. Not in this world.

And those of us who live it know this. We know that no matter what is done, or said, or offered, what we are experiencing must just be endured. At least for now. But sometimes it would be nice if someone understood, and if people didn’t get so impatient with the grief that seems to carry on well past when others would have ‘gotten over it.’

“Grieve with those who are grieving,” the Bible says. But how can you grieve to a depth you do not understand?

“You are comforted that you may bring comfort,” it also tells us. So there is the answer. This pain. This pain that I have known my entire life. This pain that darkens the world around me while others are dancing in the light. This pain is given to me that when others are hurting, I might understand. Truly understand. And maybe then I can help.


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