This life right now ...

The roller coaster continues here at the Mayo Clinic in Phoenix. Yesterday it felt like the hospital staff was beginning to gently but firmly shove us out the door of acute rehab. This gentle push has to do the intricate web of insurance policies and the health care system and rehab protocol. Yesterday I was initially confused because I had just begun to get settled into week number one (out of possibly five) of our acute rehab stint here in Phoenix. Being in acute rehab for this set amount of time has been the first plan since the night of the stroke that I've even slightly been able to wrap my head around. As I continue to advocate and press for more information from the hospital staff—I’m learning they just try to get families and loved ones ready for life on the outside well in advance. I understand this but it's just been a huge week and 1/2 and I not feeling ready for the next huge transition (nor is Phil I don’t think).

Today though I’ve been completely floored and brought to my knees again by the fact that Phil is even alive. I just had a talk with a neurology nurse practitioner that basically laid it on the line to me, honestly. I realize so far they’ve been softening the news and gauging what I can handle and when. Basically Phil has some major deficits right now like he cannot read, write, or speak English very clearly. This is so scary to me as we approach entering the big wide world again. BUT, Phil (and the rest of us) should remember to count every blessing. He is alive. He is ALIVE!

I just learned that most people with his type of a stroke don't usually make it. (There are many colors and stripes of strokes and each are very individualized). They haven’t told me this until now. This type is rare; it comes on very suddenly and spreads very quickly. Recently at the Mayo Clinic only two people with this condition have pulled through. Phil and another feisty 75-year-old woman four months ago who had a strong will to live as well. This stroke is an uncommon variety (as I mentioned in the first posting of the blog). This stroke is not lifestyle induced (meaning there wasn't actually anything he could have done to prevent this) it's a rare incident. It often afflicts healthy people -- and they don't know why. The last person who suffered something similar to this here at the Mayo clinic was a 49 year-old marathon runner; sadly she did not make it. Most people don't.

In addition, most people with this substantial of a stroke on the left side of their brain (any variety of stroke) may not ever talk again. Ninety-five percent of our language ability resides on the left side of our brains. For example, a woman down the hall (who is younger than Phil) had a big stroke on the left side of her brain and is now mute. She may or may not ever talk again.

So the lesson of this particular message is to live it up while you can!!! You really never know what may strike at any moment of your fragile life. Although we all theoretically KNOW this -- it's very palpable to me right now. I see it right before my eyes. Earlier today my mind had been racing through all of the logistics of our life. What will it be like when we leave here? What will happen next week, next month, next year? How will I balance having a baby and a newly disabled husband? I've been getting anxious today while trying to figure out social security disability benefits (which is an unwieldy possible six month process), the baby, where we'll live, how or if we'll work, etc?

After reviewing images of Phil's brain with the neurology nurse comparing an original CT scan the night of the stroke and another one now (with slight improvement) -- I am back to just being thankful for life. Life. Simple life. Each and every one of our lives (including the baby residing inside my body) -- has a fragile existence. I too need to remember to keep vividly living, fully.

Here are a few words of wisdom from Phil himself, another old poem:

a song

Met an old man on the road,

he looked wise, I said Tell me what you know.

He said My day is done, I’m almost gone,

come closer, I’ll teach you to carry on.

He said

One, be lively;

two, be true;

three, find beauty whatever you do;

four, each day be still an hour;

five, rise up with quiet power;

six, give away your broken heart;

seven, make your love your art.

p.s. Another note – Phil played the shakuhachi for me today. He can still read the Japanese music (but not English), and although his sound isn’t as strong right now as before it lives on! He played....