self-care

Durably Disordered

In June of 2015 my daughter (the younger of my twins) was eleven years old.  We were camping and had just come back from a difficult visit to the camp store.  Stuff happened.  I was irritated by the onlookers and wrote the following on Facebook:

“My daughter suffers from selective mutism, social anxiety, learning delays, and unidentified behavioural disorders.  I stood beside her in the public camp parking lot as she lay on the pavement and loudly invited anyone to run her over … Because her mother doesn’t care.  ‘We’ don’t love her or want anything good for her.  ‘We’ are the worst parents. 
She proceeded to punch me until I couldn’t breathe.
You all saw it.
Don’t judge her. Don’t take it personally when she won’t look at you or talk to you.
This is a very real mentally disordered reaction to not getting the toy she wanted from the store and simply from being around strangers.  Your eyes on her make her anxious, and she assumes you want something from her.  Many things set her off.  Sometimes, she chooses fright, freeze, or flee.  This time, she chose to fight.  It happens often.  It’s devastating.  If you encounter us again, please give us the space to deal with it.  Prayers and love are welcome.
Don’t tell us how to parent.  Reserve judgment.  We are doing the best we can to do right by her.  Awareness is Everything.”

I received a lot of sympathy posts.  It just made me angry with myself for trying to protect my image of proper parenting.  Nobody needed an explanation.  My own personality disorder switched on and made me fight, too.   

I don’t know what it is like to be my daughter.  She, however, identifies with me.  She sees me get flustered, sweaty, angry, and popping pills.  We normalize each other’s behaviour.  It’s a daily struggle for everyone who lives with us. The pressures of life weigh heavily upon anyone who is mentally ill or somehow neurodiverse as well as for caregivers.  Mental illness is common, but my daughter says she often feels strange and alienated. Some days she feels like she should never have been born. Other days are tolerable. Once in a while, she has a happy day. We celebrate those moments. 

She began medication for anxiety, depression, and selective mutism when she was nine.  It was a hard decision.  I loved her spunk, bounciness, brightness, creativity, and  joie de vivre.  We were terrified that we would lose those beautiful parts of her personality.  It did change her.  I can only describe it as a kind of numbing.   Her intense emotions were replaced with a void of unfeeling. Her expressive body movements and her voice became less marked.  As the years wore on, we added Autism Spectrum Disorder to her greatest hits list.  Looking back, it all makes sense.  Cradle to nineteen – she has quirks that make her as unique as she is complicated.  She is a fabulous artist and extremely knowledgeable about insects, animals, and the natural world.  

I’m writing this after a couple of hours with the Newfoundland ponies that my friend at Poppy’s Haven so generously allows my twins and I to interact with.  Today my daughter wasn’t feeling her best.  Whenever she overextends her effort to be social, she manifests physical symptoms.

Oh, but the smiles!  Oh, but the sound of her voice!  Oh, but the delight she took in caressing, grooming, and whispering to the ponies!  It was so great for both girls.  Combined, the three of us are a walking ball of tension and anxiety.  Not today though, nope.  We even visited with my friend’s Newfoundland dog.  What a beauty.  He sparked much conversation.  

Today I caught a glimmer of the brightness I rarely see since starting my daughter’s meds.  We are so blessed to have a safe place for her to enjoy and practice being herself.  I am forever grateful.

Please. Help us normalize mental health.  Talk about it and fight against the stigma.

A Sibling’s experience of tragic death.

My brother and his son.

My oldest brother would have been fifty-five years alive on July 4th.  He died by suicide in 2012. Eleven years later, I find it hard to express how it affected me and continues to weigh on my being.  

His only child, a son, turned sixteen this year.  He and his mother daily face the stark reality of my brother’s death. I have the LUXURY of distance. I can choose to avoid the pain of it, at least temporarily.

His death demarcates the EXACT moment my parents began to visibly and mentally age.  They were in their mid seventies then, enjoying retirement and grandparenthood. A wonderful life stage. For a time, their loss numbed their energy and emotional availability for the rest of us, the sibling survivors, and our families. Our relationships have been forever altered.

The night IT happened, my second oldest brother called me in the middle of the night.  We had a very strange conversation. I wasn’t really awake. I wasn’t aware of the time and tried to sound like it was just an ORDINARY call.  But it wasn’t. It was surreal. My brother, on the other end of the phone, was clearly not himself. It took the rest of the night for our words to translate into a small hint of understanding that my oldest brother was ACTUALLY DEAD.

I spent that first day sitting at the computer, watching all the messages stream in on Facebook, where I’d unceremoniously dumped the news.  I was too overwhelmed to do anything else.

I did not see the place where it happened. I did not have the opportunity to go through my brother’s things. I didn’t even see his body (only his wife identified him). He was cremated. I arrived TOO LATE to be a part of those moments. We’d had to make many arrangements for a long road trip with young children and an uncertain date of return..

I did get to go with my disoriented father to “PICK HIM UP” when the funeral home said he was “READY”.  Dad got lost on the way. He pulled into a fire station to get directions. Irrelevant details. Everything was irrelevant. We were stunned and enduring what we thought were necessities. We were moving like puppets with no self resolve, through what felt like someone else’s nightmare.

When I first saw my mother, she hugged me, tearfully saying, “This doesn’t happen to OUR family”. After the funeral, my father said to my sister, brother and I, “Don’t any of you PULL anything LIKE this on us again.”  Their words have remained in my ear as my mental health struggles play out and my own family’s difficulties have evolved. What Mark opened up (that was his name, MARK,) was a Pandora’s box of all the things that were NOT talked about in our family.  We knew my brother was a recovering alcoholic. We knew he took medication for mental illness. We knew he’d been a psychiatric in-patient. WE KNEW. 

I always worried he’d get killed doing something wild like rock climbing or from a grizzly bear attack. An accident was probable (a gruesome, unintentional death would have, perhaps, been easier for us, I don’t know).  I wasn’t prepared for his death by his own hand.

I held what was my brother in an urn on my lap. That’s the closest we’d been in many years.  We’d always  had a complicated relationship. I feared him as much as I adored him. Clutching his urn felt like a violation on my part. It was a much needed confirmation of his death.  However, I wondered for months whether it was really him in that jar. Maybe he faked his own death? He was smart like that.

During the ensuing months, I morbidly pored over the internet for information and descriptions of the “how’s” and the “what’s” of his method of dispatch.  I think he wanted to feel it, to know it was happening. You know, to be sure. I wonder if he changed his mind when it was too late?

I understand that he was in so much emotional agony that death seemed his only way to relief. Maybe he didn’t want to die, but it is certain he needed the pain to stop. The health system had worn out their resources without giving him peace. 

He loved his son more than anything. It doesn’t make sense that he would leave him or believe his son or any of us would be better off without him.  How could such an intelligent, creative man think so little of himself?  It is simply irrevocably tragic.

My faith tells me that God is not the source of our suffering. God walks this road with us and leaves no one alone. Suicide does not deter God’s love.  I take comfort in knowing God was with Mark, even if he wasn’t aware of this truth.  I believe God wept for my brother and received him into all peace.

We don’t remember him for that terrible day or his final desperate act for relief. We remember him for his life, and we honour him by living out  what we loved about him.  

I empathize deeply with his pain. I am angry with him, and with the powers that be that failed him. I am ashamed for not supporting him in his struggle.  I know now.  I will do everything I humanly can to make sure my children, my husband, and all whom I love really know it. I will tell them how important they are and how worthy they are to live. I will take my meds and engage in self care to ward off the lure of that horrible surrender.

Please take good care.  Be gentle with yourself and make lots of room to hold space for the ones you hold dear.

Me and Mark.

Self-Care or Self-Sabotage?

How do you practice self-care?

Five years ago, I actually had time to focus on my self-care. It was great, except I was on medical leave to recover from ‘continuing to work’ for a year after being diagnosed with a kind of liver disease related to toxemia.

The year I spent working after the fresh diagnosis was the beginning of a huge mental breakdown. I lost 100 lbs while restricting food in order to lose weight for the sake of my liver.

By the time I agreed to medical leave, I’d become a shadow of myself. While on leave, I was required to seek much needed help from the psychiatrist I still see today for my ever-looming battle with disordered eating and severe episodes of depression.

So, I set out on a six month journey of self-care. I walked the dog every day. I took time to eat healthy foods. I started daily yoga. A fitness guru friend trained me to lift weights every 3 days. I spent time enjoying reading. I spent a lot of time outdoors. It was Super Duper FANTASTIC.

When I returned to work I WAS much healthier. I wanted to continue keeping my self-care routines. I was DEDICATED.

There is a line between self-care and self-sabotage. I didn’t have time to do ALL the lovely and soul- nurturing THINGS. Self-care became a CHORE. It was another impossible box to check. It sent me spinning.

We need to be attentive to our bodies and our thoughts. Pushing ourselves to fit everything in is not helpful. So, now, I’m learning to be accepting and comfortable with my inability to do it all. I can do that sometimes when I stop and breathe and notice all that my senses are experiencing.

The Angst of Self Worth

Daily writing prompt
How do you waste the most time every day?
View all responses

I’m embarrassed and a little anxious to admit that I waste too much valuable time on negative self talk and reactive arguing with my family. Terrible. I NEED to be right. I NEED to be validated. I NEED to know that I count. I know this stems from years of low self esteem. I have spent a lot of time competing for attention and tolerating the worst of it just to remain guarded and feel safe in my own skin.

I question myself at nauseum. Did I say the right thing? Did my facial expression reveal my inner thoughts? Do I look professional? Am I too casual? Did anyone notice me swearing?

Then there are the shouldn’t-s. You shouldn’t have said that, ate that, bought that, texted that, worn that, tolerated that. You shouldn’t have waved at that person. You shouldn’t laugh so loud.

Being distracted by personal negativity often keeps me from seeing the good stuff that’s happening all around. I miss too many moments that could be GREAT because ALL MY PARTS are too loud and I can’t hear the voice of calm and wellness. I even forget about my faith – and that’s something. I believe in God’s steadfast presence in me and in ALL, yet I let my fear of abandonment win out over my desire to love. When someone I care about tries to get me to knock it off, I waste even MORE time fighting with them. It’s such a miserable waste of time to be closed off to being, feeling, and living happy and well.

I hope we all remember our innate and divine worth and rise above our human crap to live openly and compassionately with others as well as with ourselves. Chin up.

My little ponies – mental magic

My daughters and I have been volunteering at Poppy’s Haven, a Newfoundland Pony farm near us. In our day to day living, the girls and I are all kinds of anxious. The younger of my twins was turned away from high school because there were no feasible accommodations to help her cope. Tacked onto a long list of diagnosis’ is her Selective Mutism. I think that’s a misnomer. It should be called Situational Mutism. She becomes physically unable to speak when she anticipates that someone – especially adults – might expect her to do something that she finds threatening. Over the years she has improved a few baby steps.

The ponies are a huge boost to her well being (and mine). Both girls (they’re 19) smile large and breathe deeply while they groom the ponies with soothing, rhythmic motion. Instead of stimming, they touch the textures that are ALL HORSEY and feel the goodness of the moment. The ponies are very receptive and interactive. They nudge, and listen, and ignore with so much personality. It’s just a delight. Today the girls had the ponies out to play friendly games – games to help ready the ponies to accept riders without being spooked. Taking the lead of an 800lb animal and having it listen to you is an ENORMOUS self esteem builder. I am so profoundly overcome to hear my daughter speak to the owner, who is as gentle and kind as the ponies. We are truly blessed to have this opportunity in our lives. Ponies, dogs, gerbils – they are all creatures with calming abilities. You can feel their unconditional acceptance of you and all of your quirks. It’s been a good day. God is good.