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.

 

 

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3 thoughts on “A Meditation

  1. Hi MJ… another brilliantly written post, thank you. I have something else in common with you, I cared for my step-daughter who is also schizophrenic for the three years I was married to her mom. I was also her court appointed guardian, something I offered to do – being an attorney might be helpful, and my ex-wife, Coleen (with one l, lol) and her parents had enough; they were not able to do it anymore. Cassandra was 19 when I met her, in her worst days of schizophrenia till then, and my first job was to get her admitted to a state mental facility – a very difficult task. I was someone who could handle it, not having done so like her family for many years. And I was very good at it, but it took a toll on our marriage (on top of the fact that Coleen just could not come to love my son) and was a part of our end. It was all very difficult and very sad. I no longer have that commitment, but I can relate (somewhat) to what you are going through and probably will go through.

    I was on my own, totally, once I was in charge. Again, I welcomed this – all a part of being a good husband and step-father. But when Cassandra was ordered flown out of California by a judge out there, I was on my own when I picked her up at Hartford’s airport (at 1:45am), not having any idea what shape she was in and a nervous wreck worrying about whether she was going to grab the steering wheel while I drove the both of us back to the hospital she escaped from. (Turns out she hitch hiked across the country in her condition, a beautiful young lady who had no sense at all about her personal safety.) We were worried sick the whole time she was gone, and then getting her back brought the other side of worries.

    I could go on, but it would just take too much. I’d always be willing to chat with you if I could be of any help- or email, blog, whatever you are comfortable with. I wish I could make it all easier or tell you I have some answers, but I doubt I have many. Every schizophrenic is so very different.

    You are an amazing mom – you’ve got that going for you… Remember too, things can get easier with time, conditions can improve. At some point though, you are probably going to need some sort of break, and I hope you get that.

    And you have your writing, which is amazing and perhaps a novel will help you and others? I’d be first in line. 🙂 John

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