Do It Again

She does it a lot.  You reach down, Marty turns her cheek to you, you kiss it, and she says, “Do it again”.  You kiss her cheek again, she says, “Do it again”.  This repeats four maybe five times, so always be prepared, Marty digs being loved.

That wasn’t always the case; she struggled with feeling loved, with feeling worthy of love.  Marty wasn’t ever sure she deserved the love and affection of those around her, more important; too often she didn’t feel very lovable.

That has changed.

She likes to be hugged, she likes to be kissed, she likes for you to hold her hand, touch her arm, rest your hand on her shoulder, she loves affection.  Mostly she loves knowing she is loved and she eagerly accepts that love and the affection that comes with it.

Marty can still be kind of ornery and occasionally the old tart, acerbic Marty arises.  Like, when she told me that my shaggy hair and shorts and sweat shirt were just a little bit of an embarrassment to her.  But, on the whole, I would call her sweet, loving and someone who loves to be loved and is not shy about saying give me some more.

All of us, at times, struggle with the idea of accepting love, accepting care; even from someone we know loves us.  Marty was/is not alone in that.  We don’t feel worthy of another’s sacrifice, we don’t feel we deserve adulation or praise or affection.  We have that voice in our head rattling around telling us, “You are not worthy, this other person’s love is more than I deserve, I’ve done nothing to cash in such a rich reward. “

Marty felt that, it made her angry, it made her sad, it was frustrating.  Not anymore.  Today, in our new normal, she gets it.  She no longer thinks about being worth loving, she doesn’t run all of the negative around in her head, that would be too hard, she simply says, “Do it again” with a level of assurance and expectation that you are going to kiss her cheek as many times as she asks and that it is okay, it is perfect for her to ask, again and again and again.

I attended some business training years ago that focused, to a small degree, on accepting compliments, accepting nice things people would say to you.  We learn early in life to be humble and too often we take our humility to absurd levels, not accepting kindness, not accepting good things; we must pass on kindness from others if we ourselves are good.  We need to learn to accept those kindnesses and simply say thank you, accept the words, accept the love.

The Marty of today knows, she absolutely knows she is loved and I think she finally believes she is lovable, worthy and deserving of my love, of our children’s love, of our family’s love, of our friends' love.  She gets it, she understands that we can never particularly deserve another’s love and affection, we can never earn that greatest of things through our actions. 

Love, the love of other people, the love of God is given freely, it is not earned, we don’t necessarily deserve the love of others, it is the greatest of things, it is the penultimate gift we give and receive. 

When it’s offered we simply have to accept it; we simply have to say, “Do it again.”

The Pain of Awareness

She has many of the needs of a child, yet she is not a child at all.

The strokes that scarred her brain stole her independence and her ability to care for herself.  They robbed her of the ability to do the simplest things.

I know she doesn’t feel like a child, she knows she is not a child, she doesn’t want to be a child, but she knows she is as vulnerable as a child.

All of this is the anti-Marty.  Her new normal, her dependence on others, this child-like vulnerability is the antithesis of what she was, the way she saw herself.  She hated feeling dependent, she hated being vulnerable, she craved control.

Marty is a dependent, she is dependent on others for virtually all her care, she is dependent on me to care for her, me, someone she trusts 99%, not 100%.  

I asked one time if she trusted me completely, she said she trusted me 99% worth.  I then took the chance and asked her if she trusted me 99% of the time before the strokes and she paused, thought and told me, “No, it was more like 95%.”

Hey, it’s an improvement.

Marty, before the strokes, hated feeling, being vulnerable; it made her feel weak, out of control.  She chafed against the idea of needing help, it made her stiffen, it made her angry.  She was one of those you did not want to cross when she was backed into a corner or felt a little incapable, she could bite.

Marty, after the strokes, accepts vulnerability, she understands her needs, she understands that the scars on her brain limit what she is capable of doing.  None of that means she truly accepts it, none of that means that the part of her personality, the part of her ego that took pride in independence is gone, it may be scarred, but it is present.  She is aware of her frailties and she does not like them.

I watch Marty as she is necessarily rolled from side to side to be dressed.  More often than not she closes her eyes; she closes her mind to what she perceives as the indignity of what is happening to her.  It doesn’t matter how careful we are to preserve her dignity and privacy, what is happening is contrary to her core nature, contrary to the core of the woman I met almost 40 years ago and she knows it, she is fully aware of her loss.

When I met Marty she was smart, funny, independent and not vulnerable in the least.  It took years for me figure out and understand her soft spots, it took years for her to begin to trust me and it wasn’t trust 99% of the time.  She wanted control, she wanted to do it her way, she wanted to do things the best way and that was her way.

She’s not that much different today, she just understands she has to relinquish control, she has to accept vulnerability, she has to live with others doing things for her she would never have allowed anyone to do, even me, maybe especially me.

Its part of the crime of stroke, the scars rob you of your physical abilities, they take memories, they take mental skills, they take fine motor skills, they steal muscle control.  But with Marty, they have left her awareness of the past and the present.  And while the recognition of that loss is dreadfully painful for her and for those who love her, I am so grateful she is aware.

It feels wrong, but I find I’m grateful of that awareness, I’m grateful she is aware of the people who know love and value her.  I’m grateful she knows and understands how much we are willing to do to care for her.  In many ways we are lucky because she knows the sacrifice, she knows the effort; she knows what is happening not to her, but for her.  

She understood life and love and pain before the strokes.  

I know she recognizes what she sees most days, she understands.

It’s the pain of loving; it’s the pain of being loved.