Lessons from the Rishi: Dragons I Can't Kill

"I think my dad would really like to have these."

Things Michael says are never quite what they seem to be at first.  Many is the time I have realized what he was telling me months after the fact.  I'm much quicker now. This one only took me 20 minutes.

Michael said this to me the last time I saw him.  My custom, on our "Fridays with Michael" visits is to bring him treats. Always flowers from my garden since he never gets to see it himself.  "Accessible" food that he can manage himself, like protein bars and trail mix.  Maybe a home cooked meal.  This particular visit as a special treat I brought him just picked, fresh with morning dew, gorgeously ripe wild black raspberries from my yard.

He ate four before making the above comment.

I didn't press the issue.  I didn't understand how he didn't savor each last one so lovingly picked just an hour before, but I let it go.  A couple years ago that would have been hard.  At that time I was in my "If I just try really really hard to think of everything I can possibly do for you then maybe I can counterbalance all that quadriplegic stuff and you'll be so happy to be so loved and cared for that you will want to live forever and never ever die before I'm ready which will be never" phase.  I was like a pack horse.  I'd bring 17 bags of groceries, a stereo that he could manage with what function he still has in his hands complete with a hundred or more CDs, a better blender for his smoothies...you name it I tried to do it.  I was a little out of control and after several futile attempts to stop me he let me go and burn myself out on this neurotic little"rescue the quad" binge.

I have come to accept that I cannot counterbalance this "quadriplegic stuff". And now that so much in his life has destabilized with his father's recent stroke I am working extra hard to accept that his situation is increasingly perilous (not too strong a term) and that I can do nothing to save him from it. Quadriplegia truly sucks and as charming and positive as Michael works to stay, there is only so much pleasure that he can get out of life after 32 years trapped in this body. 

We don't talk much about this.  We don't have to. We know the score.

I put the berries away and we chatted for a bit before I excused myself for the restroom. As I was picking the inevitable raspberry seed from my teeth I realized why Michael wanted to give the berries to his dad. 

He can't get the seeds out if they get stuck in his teeth.

Sure, he could have said that but it gets very old having to say over and over "I can't do that/have that/be that either, but thanks for trying once again." 

So instead, I got the redirect.  We all get it.

"Would you like a piece of candy?" is code for "Would you mind opening a piece of candy for me?"

It isn't that he's passive.  As he talks about in his book, he's very smart about his needs and those of the people around him.  He needs to not always be asking for something every five minutes, to not have to chant an endless mantra of "Oh, here's something else I can't do for myself."  And no one wants to be asked to do something with that frequency either.  If you say, "No, thanks" he may go without the candy himself. For him, it was worth a shot but he'll let it go because he is forever calculating what is important so that he doesn't burn any of us out.

But because I love him and am pretty intuitive, I have learned to listen and decode.  In fact, I'll admit that I had the briefest thought about berry seeds when I was picking them but my desire to bring him my favorite summer berry overshadowed the intuition. Who wouldn't love my favorite berry?!

Bringing the berries was about me, not about him. 

I dare say some of you may have fallen into that trap yourself doing something that you thought was wonderful for someone else only to have the effort fall flat or even backfire. It's hard not to take that personally and even harder not to find fault with the one who fails to swoon at your considerable effort.

Meditate, baby, meditate. (And hang out at this blog for help with that issue.) That is poison in a relationship.  Poison.

I've learned to make that distinction.  Tough, tough work that was (and still is) but invaluable. Tough because we want people we care about to love what we love (some even go so far as to see this as necessary). Tough for me because I hate feeling helpless. Tougher still because I hate the feeling that his quadriplegia is bigger than me.

It's a dragon I can't kill.  But damn if it doesn't teach me something every single time I see them both.  It's like that for me. There is Michael and there is Michael's body.  They are different to me.  He's worked hard to make them be. He's the David Blaine of quadriplegia.

I know those of you who have been around my blogs awhile may have felt a bit like I've cried "Wolf" about Michael's impending demise.  That's just the nature of things.  His situation has always been precarious, but we're at a new level of unravelling here.  He's one tough man, as is his father, so let's not talk about time and how much may or may not be left.  Instead, I'll share with you what I have learned and am learning and how.

This isn't a story of disability, although it is certain that his disability that has been one of my teachers.  It's a story of love and friendship and communication and awareness and spiritual growth and consciousness and all those things that make us come alive to each other.  He's a true friend in the deepest sense of the word.  A man I could have spent my life with. Somehow I have two of these men in my life, one I did marry and one who let me go so quietly I didn't realize what he had done until 15 years later.

How do you say goodbye to someone like that if you are so lucky as to have found them at all? 

That's what I'm learning to do. 

 

Comments

[Kate]

Thanks.
wish there were a bigger word...oh, yeah: Love you.

[Laura Young]

Right back at ya, baby. Both the thanks and the love.

[elizabeth]

I like the blackberry story. It reminds me of so many converstations in my relationship. I think at some point you just hit the "if they don't get it, then I can't explain it anymore" part. I don't know the difficulty of caring for someone with a disability, which seems to be a story less told.

[repo blog post]

Hey,
I really enjoyed your post.