Marriage and Caregiving Can Go Together

When I got married, I did not expect to get divorced.  That is probably what every divorced person says.  It’s almost funny.  It’s funny because it’s true.  I expected it to be hard.  I expected it to even be an ordeal at times.  I also expected it to be good.

So, what went wrong?

I don’t have any divorced friends.  I am the black sheep within my social circle now.  I’m also very private by nature so only a select few know the real truth behind my divorce–the reasons I ended it.

Domestic abuse.

I’ve been silent for a while on this blog because I’ve been active elsewhere, documenting the entire process.  It’s kept me sane.

That’s not what I’m here to discuss though.  I’m here to talk about how caring for children with special needs and/or disabilities can and will impact your marriage.  How it will distill your personalities and reveal the flaws and what you can do about it so that you become better, not run over in the process of caregiving.

My marriage was never great.  That should be stated.  It wasn’t even good.  It was middling.  We should never have had children together, and I don’t mean that in a regretful way.  What I mean is that children should be born into a family where they are equally desired by both parents.  In retrospect, I don’t think he wanted them or knew what it meant to be a father.  A good father anyway.  He was the distant, uninvolved father who worked, brought home the paycheck, and involved himself with them at his convenience.  He was Generation X’s Don Draper.

He also rarely involved himself with me in meaningful ways.  One of his favorite ways to spend time was sitting in bed together, parallel reading.  I had something different in mind when it came to spending time in bed together, but he was not generally up for that–unless I wasn’t.  Then suddenly he was.  There were always games afoot.  Psychological warfare.  These games made him the victim in our relationship and in his life.  I didn’t see it until our youngest daughter was born.

Milly was our first daughter to be diagnosed with anything.  She was diagnosed with an autism spectrum disorder and anxiety along with sensory processing disorder at 4 years-old.  She, however, came into this world an overwhelmed mess.  She did not sleep as an infant or toddler which meant that I didn’t sleep.  I was diagnosed with chronic migraine disease and fibromyalgia a little before her diagnosis all due to four years of sleep deprivation and the strain of caring for a young child with some kind of undiagnosed disorder.  That was when I started getting sick.  That was also when he started hiding–running away from parental responsibilities.  In the midst of my search for answers as to why our daughter screamed constantly, he yelled at me, saying, “You just want something to be wrong with her!”

Pause and observe this.  This is denial, and this is a common reaction in couples.  One person in the coupling usually denies or minimizes the child’s “issues” and, statistically speaking, it’s usually the father.  I don’t know why.  It’s a frightening proposition to be faced with.  A sick child.  The “what if” script starts: “What if…what if…what if…”  A natural response might be to run away and pretend that nothing is wrong.  Another reaction is to blame the partner.  They might be doing something to make the child behave that way.  Is it the day care? Is it the in-laws? Is it your faulty genetics? Blame comes on the heels of denial, but blame is simply the emission of anger and emotional discomfort aimed at a target.  We all do it.

It is in this moment, however, when those first wedges are driven into relationships.  When one parent is seeking answers to help a potentially sick child while the other denies and shifts the blame.  This is what sets the stage for marital discord down the road.  Why? It erodes trust, and trust is the currency in all relationships.  In close relationships, I have to know that you have my back, and you must know that I have yours.  When your child is potentially ill and in need of help, that is the moment to come together and share fears.  So when one partner uses the other for target practice, that is a betrayal of that most sacred trust.  It is a form of abandonment within the relationship not to mention one partner has just left the other partner to figure out the problems all on their own.  The relationship was temporarily sacrificed as a coping strategy.

What happens from there? The abandoned partner usually begins remembering all the other times they were abandoned by their mate.  It’s a gestalt experience.  And the seeds of discord have not only been sown but are now being fertilized.  Depending upon emotional maturity, character development, and past issues with one’s family of origin, a person can either get past this or not.  I’ve seen this dynamic play out within other relationships wherein there were children in the middle of receiving a diagnosis, and it definitely played out within my own marriage.  It was a devastating experience.  As the primary caregiver, it caused feelings of isolation, anxiety, and fear, and I didn’t know who to turn to.  My spouse wasn’t on the list because he removed himself.  As far as he was concerned, his kid was fine, and, if his kid was fine, then I was fine, too.

Then, Grace got sick.  There’s nothing like a psychotic episode to wake a person from their oblivious slumber.  His denial reigned supreme.  Wash, rinse, repeat.

Eadaoin hit puberty and bipolar disorder came to the surface.  It was like someone signed us up for some kind of nightmare roller coaster ride, and we couldn’t get off.  I was barely holding it together, and I kept looking to him for some kind of support.  Anything.  He just locked himself away in our bedroom which he had turned into his office.  I had nowhere to go.  I thought that if we could maintain some kind of connection–any kind–maybe we could rely on each other for something.  I pushed for sexual connection.  That’s when the worst of the domestic abuse started.  Clearly, he didn’t want to be involved in anything.  We were on our own.

A year after I had corrective surgery on a hip injury he caused I called it: “I think it’s over.”

He agreed.

So, what is to be learned here?

  1. Always put on your oxygen mask first.  What does this mean? Tend to your stuff! If that means going to therapy, then go.  If that means going to the doctor for a physical, then go.  If that means joining a gym and getting in shape, then go.  If that means changing jobs, then do it.  There is only one you, and, if you are a caregiver, then someone really needs you.  Take care of yourself so that you can be present.  More than that, if you are in a long-term relationship, then be the person who you would want to be in a relationship with.  I can’t emphasize that point enough.  Someone chose you.  They met you, liked you, and then fell in love.  With you.  They decided that they wanted to spend their life with you.  That’s a very big deal.  Never forget that they can always change their mind should you suddenly become a total dick.  I’m being frank here because it needs to be said.  We must always be developing our character and maturing our personality as well as taking care of our bodies so that we can rise to the circumstances that life throws our way.  This is why you must, must, must make your health, well-being, and ontological state a priority.
  2. Assess the state of your relationships.  Doing a survey of how you are doing in your relationships is key to developing your character as well as addressing bad habits that naturally develop over time.  Are you known for anything in particular by your friends and family? Are you the person who loses their temper? Well, get on that.  It’s time to be known for something better.  Are you always late? For everything? Develop your empathy and address that shortcoming.  Doing an honest personal inventory of who you are now vs. who you would like to be is a courageous and valuable thing to do.  It sets a course and provides a spark of momentum.  It’s intentional and says to the important people in your life, “You matter to me.  I know that I affect you.  I want to do better by being better.”
  3. Make amends.  This is a hard one, but it goes a long way.  Talk to the people in your life.  Had my ex-husband and I actually discussed past hurts in a meaningful way and combined them with a plan to heal the wounds (this is accountability), there might be less pain today.  He was never able to engage me in any kind of emotional discussion.  Nothing was ever addressed.  So, I was never able to hold him accountable for anything.  In the end, I was blamed for my own abuse.
  4. Grow up.  I know many people who hold onto childhood dreams of what family and marriage should look like.  They insist on keeping certain traditions alive because they find it personally fulfilling, but it hurts their family relationships.  When you have children with special needs, nothing in your life will ever be all-or-nothing again.  Everything will become about compromising, and you will take the hits.  This will feel painful to you.  I guarantee that.  You will have a moment, at least one, when you step back and look at the landscape of your life, and it will feel utterly unfamiliar to you.  This feeling of depersonalization often ushers in the experience of grief.  It’s at this moment when you feel just how hard it all is.  How much you have lost.  Just be honest with yourself and let it flow.  It’s okay.  You can see the good in the child or children you love while feeling hurt and betrayed at the same time.  That’s the dialectic of caregiving.
  5. Do a proper grief work.  If you do a proper grief work together, sharing your experiences with each other, then you will grow closer.  Ordeal is one of the best bonding experiences.  My ex-husband never went to the hospital with Grace and me.  He never went to an appointment.  He never went to the Behavioral Health ER either.  You know who did? Girlfriends.  Do you know who I am close to now? Girlfriends.  My girlfriends and I remember those early days of the disease onset, and we can even laugh about it as macabre as that sounds.  We were scared together.  They loved Grace, too.  So, I grieved with them instead of with my husband since he never left the bedroom.
  6. Stick together.  Above all, be a couple.  You were together before you had children.  Don’t ever forget that.  Find at least one thing that makes you feel connected and commit yourselves to it.  Never give that up.  If it’s sex, then have sex often.  If it’s hiking, then hike as often as you can.  If it’s watching sports together or playing sports together, then get out there and do it.  Protect your relationship fiercely.  Do not let in-laws tread upon it no matter how well-meaning they are.  This is your relationship.  Make it the number one priority in your life.  Even above your kids.

This is what I have learned after nineteen and half years of marriage and nine months of separation with a pending divorce.  I have never been someone to look to statistics for answers.  Of course, now I am a statistic.  You don’t have to be.

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Endings and Beginnings

2014 is coming to a close, and I am so glad.  This has been one helluva year.  I’m having yet another brain MRI today–the day after Christmas.  The year has to go out with a bang, I guess.  Well, I say, let it! So long as 2015 is inaugurated with celebration.  We made it through 2014, and we’re better for it.

My girls and I spent an afternoon with one of my favorite friends the day before Christmas Eve.  Our two families have had a tradition for a decade now.  We get together and make gingerbread houses.  When we began this tradition, our children were young, and it was really just the two of us frosting and decorating the cookie cottages while attempting to keep the little hands from stealing all the candies.  Odd traditions began.  My friend would unfailingly put the roof on her house upside down.  Every year! She would yell out in frustration, “How could I do this again?!” This year, however, we reminisced about all those imperfections and repeated errors.  It has become mandatory that she put her roof on upside down.  It’s part of the charm.  Our kids, however, took over all the decorating this time.  Eadaoin is sixteen this year.  My friend’s daughter is eleven.  The kids no longer needed our help or advice.

We were able to relax in her living room with our warm beverages and chat while our kids decorated the gingerbread houses completely on their own–even Grace.  What a strange feeling.  She asked how I was doing.  Being a close girlfriend, she went for the jugular: “How’s the marriage?”

Isn’t it funny how girlfriends waste no time? We simply ask.  There is no chit-chat.  My answer? Everyone who reads my blog knows that this year has been grueling.  “Better.”  2013 ended on a precarious note where my marriage was concerned.  2014 will end on a better note.  Perhaps in a major key.

So, what happened? I’ll be as honest as I can be in hopes that it might help someone else should they find themselves in a similar spot.  The day I began writing this blog, the clinicians treating Grace–and there were many–believed that she was bipolar.  Within a month of that diagnosis she declined rapidly and was then diagnosed with a schizophrenia spectrum disorder.  She was not yet 11 years-old.  Her overall decline from healthy child to psychotic happened in less than a year.  It changed our entire family life.  Eadaoin is in therapy today, in part, due to witnessing Grace’s psychosis onset.  Doireann is a completely different young woman today because of Grace’s disease.  We are all different now.  Severe mental illness in a family affects everyone, and everyone behaves differently in terms of coping strategies.

Ordeal has a way of distilling personalities and bringing forth cracks within character and the relationships therein.  I am inherently tenacious.  This is both a blessing and a curse.  I do not give up.  I will hone in on a problem and attempt to fix it until it is no longer a problem or until I have died.  This approach to life worked well where Grace was concerned.  This approach to life worked well in almost all former circumstances.  It does not work well within a marriage when the problem is perceived to be a person.

My husband is as avoidant as I am tenacious.  This is his primary character flaw.  We are both exceedingly stubborn in our positions.  The more I pushed him to deal with those things that increased his anxiety, the more inert he became.  This only increased my drive to “solve him”.  What I did not understand was that he was coping with watching his daughter fall apart by using avoidance–his primary coping strategy.  Avoidance behavior is one of the go-to coping strategies used by those with anxiety disorders.  I do know this, but I couldn’t grasp it at the time.  How does one avoid one’s entire family? Why? One does this because one really lacks the capacity to deal with what is happening.

I observed this and insisted that he see a doctor in order to start anti-anxiety medication.  After almost 17 years of living with his anxiety disorder, I needed him to get his head in the game.  I needed my partner, my friend! I couldn’t do all this alone.  So, I issued him an ultimatum.  How awesome.  Ultimatums are never great, but he did see his internist for a physical.  It was then that he casually mentioned his anxiety.  He was given the standard anxiety check list; he passed it with flying colors.  He left with a prescription for Zoloft.  That’s it.

I must pause and say this.  If a person sees a psychiatrist, then one goes back to the psychiatrist every four weeks after beginning a new medication to discuss how one feels after beginning the drug.  The drug is tweaked or even discontinued in favor of a better or different one.  Internists should not manage psychiatric conditions.  This is where we went wrong, and this is also where I knew we were going wrong.  Recall what I said about my husband’s inertia.  Inertia was settling in at this point.

My husband had never taken a medication for his anxiety.  He had self-medicated with alcohol.  He stopped using alcohol at this point in favor of Zoloft.

A word about Zoloft: Zoloft is an SSRI.  On the spectrum of SSRIs, it is the most emotionally blunting while Prozac is the most activating.  Zoloft is also not a well-known anti-anxiety drug.  It does have some effectiveness for social anxiety, but it is not effective for generalized anxiety disorder (GAD).  Lexapro, on the other hand, is in the middle of the SSRI spectrum as far as emotional blunting and activation.  It is also known to treat depressive symptoms as well as anxiety without some of the better known side effects like suicidal and self-harming ideation for which Zoloft is known.

My husband, however, had never known life without his crippling anxiety, and Zoloft’s emotional blunting was just what he was looking for.  That dead feeling inside that the drug provided helped him cope with his own life as a father, provider, husband, and man.  He liked it.  He liked it a lot.  Perhaps he even needed it.  I, on the other hand, despised it.  He went from an anxious but likable man to a vacant, emotional corpse of a human being.  It seemed that there was no middle ground.  It was one extreme or another.

He disappeared from our entire life, but, in his mind, he was present.  He wasn’t.  He was like a wraith.  We stopped having sex.  For two years.  He had no desire.  In fact, he had no desire for anything.  He described it as feeling paralyzed under a heavy blanket, but he sort of liked it.  He just wanted to do nothing.  He wanted to lie in bed all the time or sit in his room.  He slept all the time.  A ridiculous amount of time.  He, however, was not anxious.  I don’t think he felt anything, and that’s the point of Zoloft.  Imagine a person who feels too much or a person who is completely overwhelmed to the point of being almost non-functional.  Zoloft would be very helpful because it would provide a much needed emotional balance.  Or, perhaps not feeling very much for a time would be helpful in order to learn to think rather than feel all the time.  A drug like Zoloft can be very helpful given the right brain and circumstances.  It was, however, not the right drug for my husband.

After living with him for almost two years on this drug, I truly began to believe that perhaps I was worthless and unlovable.  He did almost completely ignore me almost all the time.  There was, however, much to be learned here.  At some point in the middle of this, I realized that, as a woman, I gleaned a great deal of self-worth from the success of my relationships.  This is a rather female point of view.  I gave up a career to stay home and raise my daughters after all.  It’s not as if I have a career to fall back on at this point.  In my mind, what does it say about me if, after all this time, I come out of this with a shitty marriage and mentally ill children? I thought I had to be Martha Stewart for Pete’s sake!

What now? What if he really didn’t love me anymore? I had to get a life.  That was the loudest message that I heard throughout 2014.  Build a life.  I saw it everywhere.  A stranger in a restaurant even came up to me and told me that very thing if you can believe it–“Don’t wait for your husband to figure out what he wants.  Go out there and do what makes you happy.  Build a life for yourself.”  What an empowering message.  So, I stopped looking at him and what he was doing.  I started looking at me.  I aimed that tenacity at myself and left him alone.  I let him sit alone in our bedroom for months on end.  I let him sleep the days away.  I started making weekend plans with the girls.  I started…living.  It was hard because I felt like I was leaving something behind.  Something symbolic.  I realized, however, that we must always be bringing something vital into our relationships.  We must always be building our own happiness and internal resources as individuals if we are to attempt to build something worthwhile with another person.  Grace’s illness tapped me out, and I became so focused on her and my other daughters.  I forgot that I was a separate person, too.

So, what happened? He felt my emotional departure.  I didn’t abandon him.  I simply left him alone, and that changed the dynamic in our relationship.  He started asking to join me on our outings.  He was still emotionally comatose, and I was still seething with resentment; but, something was thawing.  Two months ago, he finally saw a psychiatrist, and she switched him from Zoloft to Lexapro.  He recently told me that he had no idea just how dead he felt on the inside on Zoloft until he didn’t feel that way anymore.  He then said, “I should have never been on that medication.”

Yes, I wanted to punch him.  The past two years have gutted me.  Our marriage has suffered in ways that I never thought it would, but perhaps it needed gutting.  There was never going to be an easy way through this leg of the journey with Grace.  It was always going to be horrendous.  We did what we had to do.  I, however, wonder if my health would be better today had he not abandoned ship as he did.

So, what’s the takeaway? I suppose that it’s this: Even if everyone else abandons you, don’t abandon yourself.  There will be crises in life.  Once those crises settle, come back to yourself.  In the end, no one is going to take better care of you than you.  Man or woman, we must always invest in our own development and healing.  That says that we are worthwhile and lovable.  We can’t expect others to love us if we don’t love ourselves.  It is, therefore, crucial that you find those expressions of self-love that are meaningful to you and claim them.  Make them a part of your life in a consistent way.  In this way, you will learn to weather the storms in life be they circumstantial, relational, or existential.  And practice the art of forgiveness.  This has been my greatest challenge and lifesaver.  Learning to move forward without giving up self-respect and, at the same time, granting pardon.  This is the grittiness of life. This is the hard stuff.  Knowing that pain and love often weave themselves together as we grow, and one doesn’t cancel out the other.  They often coexist.  Forgiveness doesn’t ease the pain, and pain doesn’t minimize love.

This is what I’ve learned in 2014.  It’s been a very painful year, but, as I said, I’m better for it.

I hope that as 2014 ends you are able to see where your paths have taken you, find a new horizon line, and begin the next leg of your journey with hope.

Shalom…

A Meditation

I was pondering the state of the union last night (i.e. thinking about my marriage).  This blog covers a lot of ground.  Keeping the magic alive is easier when you aren’t caregiving.  I’ll be honest.  Caregiving sounds almost pleasant.  Even when I think about caregiving, I picture bringing a piece of pie to my grandmother.  That’s what the word conjures in my imagination.

Say the word ‘caregiver’, and I see myself offering gentle care to quietly needy people.  Or, nurses offering water to patients.  Or even mothers and their young children–the primary caregivers.  These images are not congruent with reality when it comes to giving care to an individual with mental illness.  I don’t know what life is like for someone else.  I can only speak for myself.  Mental illness is a game changer.  A permanent mental health illness diagnosis like schizophrenia is a life changer for everyone.  Schizophrenia diagnosed in a child? Our entire family has been changed by Grace’s diagnosis.  Doireann’s personal essay for college entry was about how her life and Weltanschauung had changed since schizophrenia entered our family.  She, too, has been a caregiver.  Eadaoin has been a caregiver.  Even Milly has been a caregiver.

We have all had to learn to offer care to Grace despite our own abilities in the moment or even desires.  We’ve all had to give things up.  Caregiving becomes 24/7, or, at least one parent has to step into that primary role.  That’s me.  I am the case manager, caregiver, and on-call emergency contact at all times.  I can makes plans, but those plans are subject to cancellation at all times.  There is no family to call for back-up.  My husband is my back-up, and if he’s out-of-town or unavailable…

A few years of this creates bone-deep exhaustion, and my husband and I just want to lie down and vegetate.  We’ve achieved something spectacular if our feet touch.  “Oh look, our toes are touching!”  It takes concentrated effort to make knees touch.  Caregiving is exhausting when you’re the therapist, the case manager, the heavy, the parent, and the end all and be all for a vulnerable person.  It’s even harder when there are others standing in line behind that person who need you, too.

But, this is life.  How do we make our circumstances work for us to propel us forward rather than oppress us? This is a question that I ask often.  Not everyone cares for a mentally ill child or even a child with special needs, but everyone has a battle to fight.  Everyone.  Every single person with whom you cross paths has a personal dragon to slay.  Some have more than one.  Some people’s lives are overrun.  In any case, this is what makes humans alike–suffering.  Your station, race, gender, religion, sexual orientation, and anything else don’t preclude you from suffering.  In this, we can all come together and agree.

The view I have chosen to take then is one of personal development.  It’s easier to see it in my children than in myself.  My daughters are now keenly aware of the mistreatment of others particularly those who are vulnerable.  Doireann, who learns empathy through experience, is now almost ferocious when others make ignorant remarks about mental illness.  She has made it her goal in life to educate others admitting that she was once a person who knew nothing about mental illness.  Eadaoin has always been sensitive to social exclusion, but she is far bolder now with her friends if they mistreat a peer in school with special needs.  She goes out of her way to befriend and express affection to her special needs peers, educating her friends and acquaintances on how to treat everyone.  Milly is the biggest surprise to me.  Milly has begun to defend her special needs peers at school.  Elementary school is very difficult socially for anyone who is different.  It is not uncommon to see children running away from a child with Down’s Syndrome yelling, “Monster!” Something like this happened in front of Milly, and she scolded her neurotypical classmates explaining that all special needs children were just like they were.  They just had different needs.  It was wrong to mistreat them, and then she played with one of these children during recess.  She explained to me that one of her friends apologized for making fun of a particular child and never did it again.

Compassion.  This is the fruit of suffering.  There is really no other way to learn it.  Empathy is the ability to put yourself in another’s shoes.  Compassion is the drive to do something about what you feel after you’ve done so.  It is active.  It is never passive.  Suffering and ordeal grow compassion in us.  When we can approach our painful circumstances through the lens of character development rather than a “Why me?” paradigm, then we are far more empowered to move forward rather than stagnate.  The members of our family who are as affected by those circumstances can learn to see themselves as empowered as well.  Suffering can be looked upon differently–a portal to greater understanding, kindness, patience, and personality development.  We can’t really give that to our children.  Life develops that in us, but we can frame it for them so that they can see it more quickly in themselves and others so that ordeal becomes valuable rather than loathed.

If we are looking for opportunities to become better and more mature with a better developed character, then suffering is your gateway into that process of development.  This is what I’ve learned.  Resisting that process leads to more suffering.  Embracing it and going with the flow quickens our development leading us to the most unlikely place.  Gratitude.

At some point, we will actually be grateful for the events that we once tried to escape.

Life is so brilliantly odd that way.

 

 

Interesting Times

This is in no way a helpful post.  This is a, “I’ve been in the house for a month, and I’m going crazy” post.

I will never take my ability to drive a car or simply walk anywhere or carry a cup of coffee or get up in the middle of the night to go to the bathroom or empty the dishwasher or my self-reliance for granted.

I am still on crutches.  Four weeks didn’t seem so long when Dr. A told me about it in the pre-op appointment, but you know how cocky those bone breakers are.  “It’s four weeks on crutches and three months of PT.”  Three months is a long time.  Four weeks? I guess that’s not so bad.

It’s bad.  It’s bad because it isn’t four weeks on crutches.  It’s four weeks of 10% weight-bearing on the surgical side.  After four weeks, it’s another two weeks of practicing weight-bearing which is a long and painful process.  So, really, it’s another two weeks of trying to learn to walk again, and I still can’t drive! Well, I can only drive a few blocks.  This is intolerable! Yesterday was my first day of beginning the weight-bearing exercises.  I did not enjoy it.  I am trying to remember that I once walked.  Surely, I will walk again and this will be but a happy memory.  It feels like an impossibility right now.  I never imagined that a torn anything in a hip could cause this much trouble!

What has been the most interesting thing in this entire endeavor, however, has been observing my husband.  I’ve written a little bit on this blog about my marriage.  The past two years have been challenging what with Grace’s sharp decline.  It’s not uncommon to experience relational difficulties when a child is diagnosed with a severe health condition or mental illness.  I have been down and out.  I can’t go into the basement to do laundry.  I can’t carry the laundry baskets.  I can’t really clean anything.  I can’t vacuum.  I am just now able to get into the kitchen and cook although it’s awkward as hell.  He has had to do everything, and this is a man who has never done that.

I have suspected for a few years now that he was on the autism spectrum–high functioning, mind you.  He is so similar to our youngest daughter in temperament.  He has on more than a few occasions said how similar he was to her as a child.  She has high-functioning autism (HFA).  Part of me has wanted to dismiss this idea because I have wanted to believe that all his quirks and very annoying habits would change given time and effort.  I have, however, only seen the chasm between us grow wider over the past two years.  In the wake of Grace’s illness, I have sought greater emotional intimacy, and he has sought out more time alone.  He has morphed into Spock, that pointy-eared bastard as Bones once called him, and I have become the single-minded and overly emotional Jim Kirk.  We are at odds.  All the time.

So, forced into a submissive state of dependence, I have observed.  I have done my best to practice what I have internalized from DBT.  Observing without judging.  It is amazing what can be learned when we suspend judgment.  I have watched a man try as hard as he can to look after me and meet my needs while trying his hardest to meet the needs of his children.  The physical needs.  Driving to and from school.  Feeding.  Doing laundry.  Helping with homework.  I can help with homework, but this was physics homework.  I will hiss and skitter under furniture at the mere mention of the P-word.  He has gone to the grocery store.  He has barely worked.

What I have seen is that he can’t be emotional and practical at the same time.  He has modes of operation.  Sort of like Mr. Rogers and his sweater.  He requires a ritual to move from one mode to another.  I could write at length about the rituals he requires to make the transition from one persona to another and his intense need for solitude.  This lack of emotional affect or even cognitive empathy, however, is what causes him to act like an asshole.  He isn’t trying to be a jerk.  He just isn’t able to infuse any of his actions with any meaningful emotional content.  He behaves like Spock.  If I’m Jim Kirk in the relationship, then I’m constantly trying to provoke an emotional response in him which looks like baiting behavior.  Where’s the passion, Spock? Why do you appear to be so cold? Do you even care about us? You look miserable!

His response is completely rational.  Of course, he cares.  Look at what he’s doing.  He ticks off what needs to be done.  We are provided for.  Once the items are checked off the list, he then retreats into his bedroom and disappears for hours.  If we need him, we simply need to tell him.  He cannot anticipate a need.  He cannot read the cues.  He does ask so that he’ll know, but he will never be capable of “reading” people or a situation and understanding what is required.  Emotional intimacy is not something that he truly wants.  He doesn’t have a social drive.  He wants his family to be happy.  He works hard to provide opportunities so that we can pursue happiness.  It never occurred to me that he didn’t see himself as a part of that happiness.  He saw us going out into the world to engage in that pursuit while he happily stayed in his cloister pursuing his.  It is a shock to me.

This is what I have learned during my convalescence.  I told him the night before last very casually that I wondered if Milly might have inherited her ASD from him.  “I wonder if you might be very high functioning on the autism spectrum.”  His response? “Oh, I know that I am.”

Really? Since when? And, if that’s true, then what does that mean going forward?

Uhura loved Spock.  Jim was his friend.  On any given day lately, this is my inner monologue:

 

Interesting times, interesting times.  It’s a good thing he doesn’t have bangs (watch the clip to understand the reference).

 

Willing Partnerships

I underwent hip arthroscopy for a labral avulsion last Wednesday.  I had hoped for the debridement which meant that I’d be on crutches for a week and PT for a month.  Instead, there are now tiny anchors somewhere in my hip “anchoring” the detached labrum to its proper place.  It’s not a bad surgery really–two small incisions; but, it means four weeks on crutches and three months of PT.  Four to six months until I’m completely back to normal.  I can’t quite accept this.  I feel like I had the surgery months ago, and it was only eight days ago.  I have named my crutches Tweedle-Dee and Tweedle-Dum.  

If you are a person who is a primary anything, then you might understand my next statement.  I feel like I’m going nuts.  I’m anxious.  Really, really anxious.  I have been the primary caregiver and doer-of-everything for almost eighteen years.  I can’t even unload the dishwasher now.  It’s an event to even get out of bed.  I hate it.  I haven’t left the house.  I don’t know when I’ll be able to drive.  I certainly can’t go to the grocery store alone.  I need help with everything.  I have become dependent upon everyone around me for help.

This reminds me of an exercise I had to do when I was in college.  When I transferred from that tiny private college in New York state to the giant mega-versity in Minnesota, I got a job lifeguarding and teaching swimming lessons.  It wasn’t good enough that I had five years of experience or the gold standard Red Cross certification.  I had to go through another week of training because i would be working in a world-class facility designed to host NCAA and international competitions.  If an elite athlete needed rescuing, then we lifeguards would be the people to do that.  So, we were put through an exceptional amount of training and preparation.  We were also put through a great deal of diversity training.  

The exercise that stands out to me as I write this involved pairing off with another guard.  His name was Volkan.  He was from Turkey.  He was very respectful, kind, and handsome, as I recall.  He once told me that his name meant ‘volcano’, and then he said, “Like a volcano, I am peaceful on the outside but hot underneath,” and then he winked.  I was, therefore, very uncomfortable when we were put together for this exercise.  He always wore a tiny Speedo as many non-American males are wont to do, and I was wearing my red swimsuit with LIFEGUARD practically spackled across the chest.  He was required to blindfold me, and, for the sake of the exercise, I had to pretend that I was blind.  That was to be my temporary disability.  I then had to ask him where the bathroom was located, and I had to trust him to lead me from the entrance of the very large facility to the women’s locker room.  He tied the blindfold around my eyes very tightly.  I couldn’t see a thing.  I felt overwhelmingly vulnerable, and I also wondered if Volkan liked the exercise more than he should, recalling his prior flirtatious wink.

After I overcame my feelings of vulnerability, I felt paralyzed, leaning over, shuffling my feet.  All I could hear was Volkan’s voice guiding me.  He wasn’t supposed to touch me.  That was one of the requirements of the exercise.  We were supposed to respect every person that came into the facility and respecting their bodies was a requirement.  We could never just assume that we could touch them.  Sure, it would be easier to grab someone by the arm and lead them, but that’s pedantic and disrespectful.  What adult would want to be treated like that? I had to trust a guy that I barely knew to get me from point A to point B, and I felt almost exposed, blindfolded in my swimsuit.  That was the point though.  How might it feel to be blind? How might it feel not to know the way? How might it feel to need help from a stranger but not just a stranger? A strange voice? In a strange environment surrounded by strange noises and the echo and reverberations of bodies slapping against water, wet feet running past you? It’s disconcerting not to mention being half-dressed.  That, too me, amplified my dislike.  Would it have been so difficult had I been wearing pants? I like to wear pants.  I feel like I need them. 

Volkan did successfully lead me to the women’s locker room.  The sadist in me found comfort in knowing that Volkan had to wear the blindfold, too.  I had to lead him to the men’s locker room without touching him guiding him only with my voice.  It was a lot harder than I expected it to be.  I had such a strong urge to reach out and grab him saying, “Oh just come on then!” Do you know how long it takes to lead a blindfolded person through a huge facility to the locker room? A bloody long time! I realized how impatient I could be, and I saw how patient Volkan was.  We got to be friends after that.  I admired his fortitude, and he liked my “American humor”.  Had the term “snark” been in use back in the mid-90s, he would have used that word instead.  The two of us were continually scolded for not taking the exercise seriously enough.  That was my fault.  I kept saying inappropriate things while blindfolded.  What? I had to defend myself! I wasn’t wearing pants!

There are many metaphors embedded in this experience, but what stands out to me the most right now is the sudden loss of independence and self-reliance.  What did it feel like to be forced to rely on someone else’s perceptions of reality? What did it feel like to need another person so resolutely? How did I feel then when I couldn’t see? What would it have been like if Volkan would have been impatient, unkind, and expected me to act like a seeing person? 

I think of Grace as I write this or even Milly.  I think of anyone with a deficit who is expected to perform as if they are not deficient.  We are all deficient in some way, but many of our deficiencies don’t impact our lives in a significantly measurable way.  Mental illness, however, can impact us.  It can disable us.  Ask anyone who has endured a season of depression if their ability to function was impacted, and they will tell you that it was.  What about anxiety? Anxiety can be a crippling disability.  And, then we step into the realm of mood and psychotic disorders.  Entire families can be disabled.  

This diversity exercise worked between Volkan and me because we were both willing, and that also stands out.  I was willing to be led, and he was willing to patiently lead me.  It was a good partnership.  What if I had refused to engage or believed that Volkan was entirely responsible for me? What if Volkan refused to help me, not respected my dignity and dragged me to the locker room, or had begrudgingly helped me but had done so with a negative attitude? There are so many ways a partnership like that could go when applied to reality.  What if I believed that Volkan was out to get me or actively trying to hurt me, or Volkan resented being asked for help because he was in denial? He believed I wasn’t really blind at all.  This is a common dynamic in families where mental illness is diagnosed in a child–denial.  An effective partnership becomes next to impossible in that scenario.

Willingness is key, isn’t it? Willingness is one of the core DBT values that Eadaoin and I have been learning.  You don’t accomplish much in life if you aren’t willing.  There must be a willingness to listen, to learn, to practice perspective-taking, to validate, to be humble, to be open to other ideas and solutions, to try again, to try something new, to be wrong, to ask for help, to accept help, and to admit that you don’t know but that, given that you are willing to try again, you might very well know at some point.

For me, I have to be willing to sit this month out.  I have to be willing to let others do for me, and I’m not accustomed to that.  That means that the laundry will be folded differently.  Towels will be hung differently (we all have our ‘things’).  The girls will be eating a lot of gluten-free chicken strips, and my bed looks like a gerbil nest because my husband doesn’t know how to make it.  I have to be willing to look for what works and give up my perfectionism and ambition to do it all so that my hip heals properly.  I have to find the willingness to practice mindfulness and radical acceptance.  It’s easy to say.  Hard to do.

This experience also gives me new insight into Grace’s world.  She apologizes a lot because she feels like she’s always asking for help.  She feels like she’s too dependent, and, well, she has become dependent.  That, however, is not her doing or her fault.  It is the nature of her illness.  Right now, I need help with everything.  I can’t even carry a cup of coffee because I need my hands to use my crutches.  I am forced to rely on everyone around me as is Grace.  It is very unpleasant.  I feel very anxious.  I understand, at least a little bit, why Grace feels so much anxiety.  But, as long as she’s willing to ask for help and I’m willing to help her, we’ve got a working partnership.  I can reassure her that I don’t mind helping her because that’s what I need.  I see this now.  I need my husband to tell me that he doesn’t mind helping me.  What would be even better? I would like him to say that he likes helping me because he loves me.  That’s what I need to tell Grace then.  It’s a privilege to help her.  That would be even better.  I think that it’s normal to fear being a burden.  Why would it be different for her?

Enter willingness.

She’s willing to show up and so am I.  And, I think that’s true for every partnership in life.  Both people have to be willing to participate.  If you’ve got that, then you can go somewhere together.  

Willingness=Hope

 

Living The Dream

Life is a strange, circuitous road sometimes full of detours, cul-de-sacs, pit stops, and unexpected turns.  Just when you think that you know where you’re going, something happens.  The car breaks down.  The road is closed.  You find out that Google Maps was wrong, all wrong! You should have taken that left turn at Albuquerque.

Sometimes you just have to go with the flow even if you don’t like where the flow is going.

I always think I’m going with the flow until the flow fights me.  It is then that I realize that I’m trying so very hard to push the river.  That seldom works out.  Have you ever tried to push a river? You drown.  So, I metaphorically relaxed into the circumstantial flow and went with it as much as I could.  This is not me.  I fight.  I push.  I fix.  I am the embodiment of ambition at times.  I have to be.  It’s how you get things done.  It’s impossible to care for a child on the schizophrenia spectrum with no ambition while compensating for a spouse who is completely avoidant.

It isn’t sustainable.  This is what my therapist told me last winter.  I would not be able to sustain that level of energy expenditure or a relationship longterm.  My response? I have to.  If I don’t, then who will?

She predicted I would become ill.  She predicted that my marriage would fall apart.  She was right.  In the midst of all these revelations, however, I think I can almost feel gratitude.  It had to stop.  What fills in the gap then?  The overcompensation had to end to be sure, but what does one do with that information? Life has a way of forcing solutions sometimes.

Eadaoin’s therapist called me yesterday.  She is referring Milly to the crisis stabilization program.  Jane will be back in our house again.  Both Grace and Eadaoin have used that program in the past.  It allows for immediate in-home access to mental health services and a fast track to psychiatric services.

Milly has an anxiety disorder in addition to an autism spectrum disorder and sensory processing disorder.  She is not doing well.  She has been writing me letters daily expressing her anxious thoughts and waking up in the morning saying, “Sometimes I wonder if it would be easier to die so that I wouldn’t have to feel so anxious.”  Grace has been picking fights with Milly daily because she can’t self-direct.  Grace really needs day programming in the summer, but there is none.  Summer is unpleasant in our house.  We have a lot of mental health needs, and I can’t cover it all alone.  So, I do a lot of behavior management, and Milly is losing her ability to cope with Grace’s behavior.  I don’t blame her.  There are days I’m there as well.

During this phone call, Eadaoin’s therapist was honest.  She indicated that it was time to throw a lot of resources at our family, in part, because I had been the sole therapist and case manager for too long, and we needed support.  I didn’t have to manage a child with schizophrenia, a child with autism, and a teen with a mood disorder on my own in addition to a new health diagnosis.  She kindly mentioned my husband as well.  “You are not alone in this.”

I want to believe that.  These past few years have been indescribably difficult, and they didn’t have to be as hard as they were.  Had I had a partner in this, the journey would have been far more meaningful and so much less isolating, but, at the same time, I’ve shared this with friends.  Bonds have been formed indeed.  Unfortunately, they have not been formed with the right person.  We deepen our connections with others through ordeal.  We also lose those connections through ordeal.  It all depends on what happens during those trials.  Do we draw near or isolate? Life is predictable, however, in that it will always provide us with opportunities to try again.  Circumstances are always fresh with ordeals, great and small.  We will always have another chance to try again and put into practice what we learned.

Such is the case presently.  I have another chance to practice self-care.  My husband has another chance to practice being a partner.  I begin another little jaunt with a bit of a limp because I have a flair for the dramatic.  Next Monday, I have the profound pleasure of having a local anesthetic injected into my right hip joint.  It sounds terribly exciting, I know.  You are all lining up behind me to experience what is sure to be some kind of euphoric bliss.  Should, as my Scandinavian orthopedic surgeon said, the angels sing and I feel no hip pain after said injection, I have to have hip surgery! Clearly, I am the female equivalent of Rip Van Winkle.  I have aged thirty years in six months since I have a hip injury and no clear idea as to how I achieved it.

So, in the name of self-care, I have already lined up someone to clean my house because I really have lain in bed and dreamed that my whole house was clean.  As Doireann said yesterday after I received my estimate, “I feel like this is your wet dream, Mom.  Having someone come and clean your house.  Yeah, you should totally do this.”

It is my wet dream! So, I’m starting there.  My husband has his first intake appointment ever on Thursday (Mwahahahahahahahha!) with his new therapist.  Milly will be getting some much needed services.  Eadaoin is still chipping away at DBT.  Grace is immersed in her services.  Doireann is processing her life experiences, and, apparently, I will be reaching the heights of pleasure while watching someone else clean my house while I wait to find out the fate of my hip.

I’d say that’s a typical summer for us…

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Leaving Neverland

There is a tendency to minimize and keep secrets when painful things are going on.  We all do it.  Big secrets.  Little secrets.  There are many reasons why we deny or don’t tell the truth.  We’ve learned that people don’t really want to know, or, at least, we believe that they don’t.  So, when people ask how we are we just smile and say, “Fine.”

I’ve made this a lifestyle.  I haven’t been behaving like a martyr.  I just really believed that I could handle it all, and I didn’t realize the depth of the issues at hand.  I wasn’t sure that there was really anything to handle.  I really did believe I was fine! I didn’t discern how powerful my husband’s behavior actually was and how perceptive my children were.  Kids don’t miss much, and I know that.  I was a kid once.  I didn’t miss much either.  I was trying to make sure that everyone was okay.  I wanted everyone else to have what they needed.  I thought that I had a partner who had my back.  I think that he thinks he does, but my children don’t.  What do I believe is true?

When you grow up with extreme intensity, your “normal meter” is often skewed or even broken.  Abnormal behaviors are normalized and normal behavior is labeled as abnormal.  Healthy expectations are labeled as ‘too high’ and having expectations altogether often becomes dangerous.  This doesn’t happen overnight.  There is a slow creep to this dynamic as well as a cycle.  It’s tempting to ask, “Why did you marry someone like that?”  Ask anyone in a relationship with an avoidant personality what their spouse was like before the wedding and they’ll tell you one thing: s/he was amazing before we got married.  The personality changes come after the honeymoon.

The good news here? Remember what I said about those mental health professionals? Well, Eadaoin sees her therapist every Monday, and yesterday she talked about her high anxiety response when discussing her relationship with her father at her psychiatry appointment.  Her therapist listened carefully, and then asked if she could speak with me alone.  I thought she wanted to discuss Eadaoin.

Nope.  She wanted to talk to me.  About me.  She didn’t hold back.  She wanted me to be honest.  Was I okay? What was the truth? I just received a serious diagnosis.  I have a child with a serious mental health diagnosis.  I have Eadaoin.  I have another child with an autism spectrum diagnosis.  I have another daughter entering her senior year.  I have no family.  How much more could I expect myself to handle? Well, that was surprising.

She insisted that I get myself back into therapy.  She’s working on a referral.  She’s not taking no for an answer.  Then, she turned the topic to my husband.  She’s not letting it go.  He needs help.  What he’s doing isn’t okay.  It needs to stop.  She’s brainstorming.

So, I told the truth.  I told a professional the truth.  I’m not sitting on my hands.  I’m not doing nothing.  I’m doing something.  An ultimatum is coming soon, I think.  If I don’t take action, then nothing will change.  He will have to go to a psychiatrist.  He will have to go to individual therapy.  We will both have to go to marital therapy.  I know that he’s afraid because he fears that I will wipe the floor with him.  I find this both amusing and sad.  Yes, I could wipe the floor with him in a therapy session.  He’s spent the last nineteen years treating our family as an option.  To know me, however, is to know that I would never do that.  I have never once attacked his character or personhood.  That’s his game.  Not mine.

I will be honest.  I wanted to cry today, but now is not the time.  Now is the time for action and getting all the ducks in a row.  I almost feel bad for him.  Almost.  Change is hard.  Being held to account by your wife, your daughters, and a community of mental health professionals will be shocking.

It’s time though.  One can only avoid growing up for so long.  Eventually, one has to leave Neverland.  I didn’t dream of marrying Peter Pan after all.  I wanted Mr. Darcy.  Okay, okay, or the Dread Pirate Roberts.  But now, I’ll settle for a healthy adult who wants to be here.  Alright, I’ll admit it.  I don’t want to be with Mr. Collins either (tip of the hat to Pride and Prejudice).

It’s good.  It’s good to know that you’re not alone, isn’t it? And one’s humor is still intact.

Can we say that I’ll settle for Mr. Emerson? (thank you E.M Forster for giving me Mr. Emerson and Room with A View.  I survived adolescence because of that book.  Well, and The Princess Bride)  Maybe I need another grand story to get me through this time, too.

O Jamie Fraser, I hear you calling my name…(Diana Gabaldon’s Outlander series)

Thank you, dear readers, for putting up with me.  That’s all I can say.

Thank you.