How many horses did you say? Well, yeah…them too.

Things are not good.  Or maybe they are, and I’m just not seeing it.  I’m probably not seeing it.  It seems to be a recurring theme.

I am, at this particular point, more frustrated with myself than I am with anyone else.  And, believe me, I am very frustrated with everyone else.  Imagine then how frustrated I must be with me.

What I am going to tell you now is not intended to elicit sympathy, empathy, antipathy, comments, suggestions, criticism, encouragement.  I am simply going to state facts that might, perhaps, help me figure out why I am so very upset lately.  Even if you know me outside of this little world, please, don’t come forward with anything that you think might pass for a positive response.  I’m just talking to myself and hoping others will listen so they can realize there might be someone in their circle who feels the same way, and that might lead to, I don’t know, something good elsewhere?  Is that stupid?

Look, my mother was mentally ill all my life.  She was mentally ill all my siblings’ lives and during her marriage to my father.  Her mental illness touched many lives; people who worked with her, who were in a car next to her’s while she drove down the freeway; people who were in the grocery store while she shopped, or who made the mistake of attempting small talk at a gathering.  It affected doctors who treated her, her children, her husband, her mother.  My mother’s mental illness traveled quite happily in the genes she passed down to four of us, and we have, somewhat diluted, passed down to our children.  I am sure, however, that she wasn’t the first contributor because, somewhere in the mists of far-gone history, there is another unknown ancestor who started this ball rolling.  Mental illness is a thing with every family, but not every family admits it’s there or accepts it’s never going away.

Every single day of my life I struggle with “feeling sane.”  I have a lot more good days than I do bad ones, but I still struggle.  Our family life, our home, is a minefield of stressful situations.  I am a happy person in general, but I cannot lie and say that it comes easily.

Talk to any of my siblings and they will tell you a story about me.  They have very clear memories of my life.  They all view my narrative as something very definite, and this has fostered resentment over time.

I could tell you a story about me, but it would mean dispelling everyone else’s version.  I am tired of doing that, and I can’t, regardless of how much effort I put into it, change people’s minds when they are so convinced of what they “know” to be true.  Every story has several sides to it, and I am sure my version of who I am and how I got to be here is heavily seasoned with a desire to justify myself.

I am a happier person than I should be is my take on it.  I grew up knowing about myself, my mother, my family, things that children shouldn’t be aware of because it can break them.  I was raised with a marked pathway towards optimism because – I realize now- pessimism is more my thing.  My aunt, bless her sweet resilient soul, mounted an all-out attack on what she must’ve known was my inclination towards depression and gloominess.  If I was a happy baby and a cheery toddler, after a certain age I was brimming with a combativeness and a sadness that I could not possibly explain to you.  To me, outside of the four walls of my blissful little home and the company of my beloved aunts, the world was bleak and unfriendly.

It is, as the British would slangily say, indeed a cock-up that I find myself NOW in my little home and with beloved family members, and I feel combative and sad because there are so many things I want to fix, change, help with, improve, work on and I can’t.  I reach the end of every day thinking “what did I do today?  I did nothing!”

Again, don’t turn around and message me to say how much I accomplish.  This is about me actually voicing the things that I feel, not about getting patted on the head, back or butt for it.  I just get tired of smiling and being cheerful all the time; I’m exhausted by the whole “Little Engine That Could” act because, right this very minute, I CAN’T!

Yes, I know it will improve, and I know we hit slumps.  I know we all face obstacles, and I have to keep the faith.  I know.  I know.  I KNOW.

I am not looking for recognition, but it would be nice, lovely, heartwarming if my son knew who I am.  Don’t say “oh, he KNOWS in his heart.”  No.  No, thank you.  That I am his mother is not something he knows.  What he knows is I’m the person who dispenses medication, cooks meals, bathes him, cleans his butt, brushes his teeth, loses her patience, consoles him, encourages him, loves him, hates him, celebrates his successes, stands in front of his PECS board trying to make sense of what he wants, cannot hear him clearly because her hearing is failing and loses her patience again…

I am The Presence.  I am The Constant.  My name is a mechanically spewed term for calling for assistance.

My mother spent her whole life trying to fill a void she couldn’t clearly define.  She was so worried about that void that she didn’t really bother with anyone else’s.  The one thing we all learned from her was that voids happen.  The problem with my particular void is that it goes largely ignored by those around me, and also by myself.  I notice myself on the hamster wheel; I feel my legs powering that thing, and I cannot understand what makes me do it until I think of the void, and I realize how complex it is.

Once in a while, I pause to think about it, and it immediately sparks my need for constant movement on that hamster wheel.  I am the child of a mother who never really “clicked” with me, and I am the parent of a child who will never “click” with me.  It is the kind of realization that one cannot marinate in, or it will drive you nuts.

So…there you have it.  Another horse.  So many horses.  Wild horses…

Things can only get better, my aunt used to say.  I really hope her voice becomes louder than my worries and my frustration.  I hope I can channel all she ever said to me, and figure out a way to find my way back to not being so upset all the time…

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A horse with no name…

I suffer from chronic pain.  It may not look like it…but I do.  If you are a chronic pain sufferer you know it’s par for the course that you learn to keep going.  It’s not that the pain leaves you entirely.  You just learn to run with the degree of pain and exhaustion you’re feeling and become functional.  I am honest when I say I don’t know what it’s like to not have pain, but I do know when it’s too much to ignore and a break is needed.  I also know when it’s something I can set aside as I go about my business.

I have become used to the fact that people don’t believe I’m in pain.  I am accustomed to the “oh, it’s old age” and “but you’re so active!”  Even doctors have been vague in their commentary in spite of all the bloodwork that’s been done.  I’m too old, I’ve been told, to be diagnosed with SLE…it is a “young woman’s illness” a rheumatologist told me after I waited six months for an appointment.  When I countered that I’ve had these symptoms for a very long time she shrugged and said “yeah, but…you’re not a woman of childbearing age anymore…so…I can’t call it lupus.”  She then shrugged again and, with the most condescending look she could muster, she added, “maybe it’s fibromyalgia???”

I rolled my eyes and said, “well, you’re the doctor!”  Suffice it to say I walked out of there without a diagnosis.  The pain, however, didn’t leave me; it just kept its up and down and up and down and flare up and die down thing…  It has continued to do so after nearly two years.

I bring this up because I feel horribly guilty.  When I say horribly guilty I mean it from the very depths of my heart.  I know what it’s like to be dismissed or to be told I’m exaggerating.  And last night, after spending a whole day observing J very closely, I realized that I have been doing the same thing to him.

Holy shit, Batman…J might be suffering from some similar issue with chronic pain that flares up.  He starts out mildly rusty in the mornings; he gets better and more mobile as noon approaches.  He exercises, has lunch, relaxes, takes his bath, has his afternoon snack, and the decline begins.

The slow decline.  The “I just seem to be getting crankier as the evening progresses” decline.  The decline I recognize in myself but had not noticed in him because I’m dumb.  Really, really, really dumb.  And blind.  And stupid.  And…

Feel free to stop me…

Based on my new found illumination I am reading a lot of papers that I’ve found online, and I’m planning a trip to the library to further research what I’ve found.  Yes, there seems to be a link between fibromyalgia and Autism, but I can’t yet quite understand what the gist of the studies is.  There is, to my understanding, a suggestion that if the mother has fibromyalgia signs and symptoms it is quite possible that the child with ASD will have them, too.  I know, I know…I should KNOW about heredity, but I’ve been told so many times that it’s all in my head that I didn’t make the connection…

As soon as the whole dental work issue is resolved, I will make an appointment for him and we’ll discuss with the doctor what we’re seeing that gives us pause: the fractured sleep pattern (even before the introduction of Prozac), the fatigue as the day progresses, the complaints about aches and pains, and feeling sick.  He has also become more sensitive to some stimuli, and his bowel movements have changed (I know…TMI!)

Yes, the guilt…it’s there.  It’s big.  It’s overwhelming.  It makes me feel like I’ve failed J, but I have to make that a propellant rather than ballast.  If I failed to recognize what I was seeing as something that I’d seen before in myself, I cannot sit down to mope about my lack of emotional intelligence.  I am, instead, going to make a good list with observations, notations, comparisons that I can present to the doctor when we go to have this looked at.

All these weeks I have been thinking that J is not sick, and he is not “technically” sick.  That is: J wouldn’t qualify, to the casual observer, as being unwell.  He goes about his business every single day, and he doesn’t have a fever, any significant pain that interferes with his daily activities.  He has discomfort from a mild infection in his gum, and he has a cavity.  That doesn’t mean he’s sick.  He wouldn’t want to go to a doctor for that, especially after going to the dentist and then to his pre-op appointment on Tuesday morning.

J recognizes a visit to the doctor when he sees one, and he knows he was at the doctor in a hospital setting just two days ago.  He keeps saying he’s sick and he wants to see the doctor because he doesn’t feel like himself.  I know that feeling.  I live with that feeling.  I’ve been told, rather dismissively, that that feeling stems from getting older…and I’ve been feeling that feeling since my late teens and early twenties so, yes, technically it came from getting older, but it also stems from something else.  A twenty-year-old wouldn’t, as a matter of course, be showing symptoms that indicate rheumatoid arthritis; that’s not considered being “healthy”, and J -at the age of twenty-three- is constantly uncomfortable and asking to see a doctor.  Either he is a galloping hypochondriac (always a possibility considering that his father and his father’s family are adherents to this practice and have no qualms concocting some ailment to get out of things), or there is something that needs to be addressed.  I intend to discover what the issue is…

In the meantime, I am reading and researching, and atoning.  I won’t atone through indulgence, of course, because that doesn’t really work.  I will atone by listening more and observing better, and by talking to my son.  Because he needs to know, I think, that I know I dropped the ball.  J deserves to have me acknowledge that my impatience and annoyance with him have been unfair.  He doesn’t feel well, and I went along with the attitude that bothers me when it’s directed at myself.  That was, as I said before, tremendously stupid and unfair.

There you have it.  The horse has no name, and it might be that the name I suspect it should be labeled with is incorrect, but there IS a horse…and it makes its presence felt.  I should’ve trusted the maternal instincts that tell me J is incapable of lying (although he IS fully capable of hyperbole), and that he wouldn’t want to be checked by a doctor (an experience he finds invasive and uncomfortable) without some degree of justification.

I feel humbled.  I feel dumb.  I feel, more than anything else, bound and determined to figure this out for J.  It might take sitting through the Katy Perry movie (for the umpteenth time) to make him feel like my atonement is heartfelt and sincere.  I can take another round of Katy…I think.  Maybe I will be so guilt-ridden as to sit through Camp Rock… but I doubt it…

Let’s work on naming that horse, shall we?

…and the horse you rode in on…

Anxiety is a bitch.  Anxiety and Autism together, my oh my, are even worse.  If you throw in a dash of OCD you’re just looking down the barrel of an embarrassment of riches that could blow up in your face at the slightest provocation.

And then there’s menopause…

After any particularly strenuous battle between J and yours truly there comes a moment of exhaustion and embarrassment that culminates in some Sondheim…”aren’t we a pair?”

I don’t think it’s a misrepresentation when I say that we have a love/hate relationship and that it works quite well, thank you.  Of course, I can see people sitting up like meerkats, suddenly alert to the word HATE without giving much thought to what I mean by it…

Let me explain.

Please?

The ideal flight plan of parenting involves raising a child from birth to an age when they are fully independent of you.  Along the way, I’ve experienced, there are stops and starts, shifts in the balance of power and influence, changes to the way in which those involved communicate, and a redefinition (almost constant) of what each participant means to the other.  Every parent is the recipient of at least one “I hate you” from their children, and they might not hear it, see it, feel it, but it’s expressed in some way by the fruit of their loins.  A door that slams in response to a query or a dictum, an offering of love misconstrued or rejected, a resentment that isn’t voiced but festers for years until (hopefully) it dissipates.

Every parenting experience has as its objective an empty nest.  Too much space in the house, rooms that suddenly have no particular purpose because the occupants have flown the coop, an excess of dishes and cutlery, leftover toys and games and coats and objects that had a purpose and now just gather dust.  The days are supposed to get longer until we learn to fill them up with who we are as people once we’re done raising other people.

Our nest is populated by three.  Our nest will always be populated by three until we start dying off (oh, please…don’t freak out.  It happens.  People are supposed to die…it will happen to us in turn.  Now, please, breathe and relax a moment…)

We are three and those three have to learn to live with each other, sharing a space, habits, quirks, needs, circumstances.  We have to learn this more frequently than we would have wanted to because things shift often around here.  We were once forty-somethings with young kids; we are now fifty-somethings with a 23-year-old roommate who, we know because we’ve been there in the past, is mortified to be living with his PARENTS!

If you have adult children who are neurotypical you are probably thinking “oh, I miss my kid.”  Of course, you do.  Your kid LEAVES.  Your kid either borrows the keys or takes his/her own car to meet up with friends.  Your kid might go away for the weekend, or come to visit for a few days.  Maybe your kid brings laundry, raids the fridge, hogs the couch, leaves a mess…  Maybe your kid tells you funny/scary/exciting/outrageous stories of something they did with friends or happened on campus.  Maybe your kid hems and haws but still eventually joins you for dinner at a restaurant.

You cherish this. You look forward to it.  You treasure every moment.  You watch him/her leave and you sigh, missing them already.

We don’t really get that chance.  We get to miss TGG, but we also get to be grateful that he is now on his own and learning about life from life itself.  We miss the grandkids, the daughter-in-law, the warm and fuzzy family feeling.

J is always here.  Or, rather, J is always wherever one of us is.  Maybe not directly in our presence, face to face, but he’s occupying this space with one or the other of us, or with both.  We go to dinner, lunch, the movies, shopping, for a walk…J is there.  J takes a bath…aside from a brief moment when I might leave him to get another bar of soap or the shampoo he wants that day (don’t ask…please…it’s a thing…), we are in the same space.  There is the outside world…beyond doors and windows, and we are in here…together.

We go to sleep…J sleeps in the room next door.  We are reading in the living room, and J is watching TV upstairs.  We are in the kitchen putting the finishing touches on dinner, and J is setting the table.

We occasionally steal a moment alone in the house (whether individually or as a couple), but J is nearby.  We have nice romantic dinners at restaurants to observe occasions that are meaningful to us; J is there…like the proverbial chaperone.  He doesn’t interrupt the glances and smiles unless he’s having trouble with something on his plate, or requires some assistance.  But he’s there…

By the same token, J knows we’re always here.  Like any dude his age, he probably thinks “Jesus Christ, people, can’t you just…GO???  Isn’t there something you can do outside the house???  Go sit on that low wall in the backyard with a bottle of wine and a candle…go ahead…I can stay in here and not see you…not breathe with you…ugh…you people are ALWAYS HERE!!!”

The nest is not small, and it can feel roomy and private (or what approximates that) depending on what you want to do, or where you are, but…

We get on each other’s nerves.  It’s inevitable.  We love each other, but we hate each other, too.  As he gets older, J knows there are things he’s missing on, things he could be doing and that could be possible for him if…….  The same happens to us.  We now see ourselves as “damn, I didn’t get to…and I’m never going to…and we’re not going to have a chance to…”

When J is riddled with anxiety for several days in a row, and when his OCD (which he has no control over, and we KNOW this, thank you) takes over and all conflates to make for very rocky terrain, we do get desperate.  We do feel annoyed.  We are tremendously frustrated.

And we curse anxiety.  And we curse OCD.  And we curse Autism.  And the horse they rode in on.  And sometimes we wish that we could change J, and we wonder if he understands how overwhelming it all is for us.  And we realize that it’s, even more so, overwhelming for him.  And that he probably curses his demons, and his fears, and his compulsions.  And the horse they rode in on…

I guess the horses can keep each other company.  Just like we keep each other company…as long as they don’t mate and multiply, we figure, it’s all going to be okay-ish in the long run.

 

J gets older, crankier, and we go back to say AAAH!…

Last Wednesday J turned 23; it was more or less a miserable day, and he wasn’t particularly happy or excited.  The height of his joy was connected to the nieces and nephew calling to sing Happy Birthday in the evening.  The rest of the day was as “meh” as “meh” comes…

Thursday, miraculously, a by-then fully 23 years old J was happy and enthusiastic about EVERYTHING.  He was happy, benevolent, enthused, thrilled, joyous, affectionate, bursting with goodwill and cheer.  This streak lasted until Saturday night and was so wonderful that (fools that we are) we hoped it wouldn’t be over too soon.

It was.

Sunday morning dawned and we had surly J back.

In spades.

The weather, rainy and windy, didn’t really help.  Within an hour of waking up, we were all absolutely miserable and cranky.

Monday brought no improvement.

J, you see, has become a hypochondriac of the highest order.  Every day he wants to go to the doctor.  Every day he is told he’s not sick.  Every day he wants his weight checked.  Every day I weigh him.  Every day he asks about his next psych appointment.  Every day I remind him of when it is scheduled for…

Today we went to the dentist.  We were lucky to find an appointment very soon after his referral.  They checked his film from the other dentist’s office, and they did a panoramic thing of his whole mouth.  J was very good about this.  He gave instructions (gloves, masks, light on, light off, say AH, touch here, look there), and -lo and behold- we are back in the OR on the sixteenth.  Not only that…J got to do his pre-op appointment today.

He was weighed twice (he’s lost some weight…whee), had his BP checked twice, had his heart and lungs listened to most avidly.  The issue with his heart is a right branch thing that means his heart has to switch the current, but we were told it is not a necessarily bad thing for the time being, even though no heart things are good things entirely, are they?  Hearts are fragile things…I’ve read of commotio cordis...I am not a fan.

Just like that, in ten days, we will back in the waiting room of the OR, fretting and worrying, anxiously waiting.  It is never easy to sit through these things.  One has all the worst possible scenarios dancing around, tickling one’s worst fears in the chin and laughing.  The last time we did this J took forever to wake up from the anesthesia, and he wasn’t oxygenating properly for a good while.  We had some stressful moments then, and we had to contend with the bad cut he gave himself on the lower lip that we had to take care of, and that left a little scar.  (And this is why we now have a wound care reference book in our family library…thank you.)

So we are, once more, on the brink of dealing with another significant intervention with J’s dental arrangements.  A molar will come out…a rather sizable cavity that reaches almost to the nerve has developed, and it has to be taken care of…and that might mean that, as time progresses, J will find himself with fewer teeth than he’d like.  He is rather vain, you know, and his smile is something he’s rather fond of.

Some of J’s insistence on “being seen” is justified.  Dada has to stop for an antibiotic prescription on the way home from work.  Is J sick?  No.  Does J not feel well?  No, J doesn’t feel well.  Have I been saying we need to trust his complaints?  Yes.  Have I given in to the notion that he might be seeking attention?  Yes.  Do I feel like shit because I have been telling him there’s nothing wrong with him?  Yes, yes, a thousand times yes………

Does J have a hypochondriac streak in him?  Absolutely.  I say this because I was married to his biological father, and I lived in close contact with his biological father’s side of the family, for years.  Considering that thirty-something years ago my ex-mother-in-law confided in me that she KNEW she had cancer and was dying, and she continues to be one of the healthiest people on the planet to this very day, J does have a streak of the melodramatic and hypochondriac in his genetic makeup.  Panic attacks also abound in that side of the family, mostly among the males.

The crazy he gets from my side.  There’s no denying that.  Not only my mother, siblings…he gets it from me.  I confess this much.  I am far from “normal” and consider myself merely “functional” so I am not saying that all this is on J’s paternal genes.  I can tell you, however, that my “functionality” comes from being reminded -day in and day out- as I was growing up that one has to keep plugging away regardless of circumstances.  “Even without a limb, my dear, that floor isn’t going to clean itself, and babies will need their diapers changed…so you use the other three…and when you’re down to two, you use those…and if you’re down to one…”  You get the picture…we plug away at being alive and living.

J has to have fewer molars.  That is the gist of it.  J needs to be seen and taken care of.  That is the gist of it.  We are doing all we can to help him, and we will worry and feel like crap because we’ve let ourselves be convinced that his hypochondria gets in the way of him telling the truth.  There is some of his mania that is fed by anxiety, and we have to learn to navigate that while recognizing that he knows when something is wrong.  Like I did when he was younger, I have to learn to trust my instinct while still smelling the bullshit he is capable of issuing…

For now, well, I will do my best to get him through this next rough patch…