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.