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Tuesday, August 9, 2011

Family, Norma and the Ultimate Gift

Golden Gate in the Fog
Yesterday was my Grandmother's 90th Birthday. Unfortunately, she was not able to celebrate, or even have awareness of this milestone. She has reached a very advanced stage of Alzheimers, and is locked inside her body in a place nobody can really reach.
Dr. Dad and I went up to visit her at her nursing home in the Bay Area this weekend, after having stopped at Stanford for a routine check-in with my doctors. Everything on that front appears to be going as planned—which is great—so there's nothing really noteworthy to report about the visit, other than the very first thing out of Dr. A's mouth when he saw me was, "Ohhhhh! You've gained weight!" 
Just what every gal wants to hear first thing as someone walks into the room. 
(I get it, it's healthier than being underweight, it will provide extra protection during my feeblest moments of stem-cell procedure. Still.)

The last time I saw my grandmother, about three and a half years ago, she was in her apartment under the care of live-in helpers. Her mind had started to slip, but she still recognized me and let out an excited cry of "Kia Joooooon!" (a Persian term of endearment, as she is my Iranian grandmother) then shed a few happy tears. 
She and I have never been able to make much conversation, as English is her second language, and by the time I was able to relate to her as a teenager and then an adult, her hearing had started to go. (Dr. Dad had not felt it important to teach me Farsi, his native language, when I was a child and therefore a sponge of language acquisition. This skill would probably be very useful to me now, but I try not to hold that against him anymore.) 
Anyway, it never seemed to matter that my grandmother and I couldn't make small talk. Whenever I visited she'd launch into high-pitched exclamations in Farsi, pinching my cheeks and planting kisses all over my face, fussing over me like the I was the only granddaughter she had (as I was). 
She also had a practice of cooking up a tremendous batch of ghormehsabzi, my all-time favorite Persian stew. It involves a mountain of mixed greens and herbs, cooked down and mixed with kidney beans, beef or lamb, dried limes, and served over saffroned basmati rice. With pita bread. And cucumber-mint yogurt. MMM! My grandmother would then demonstrate the depths of her love by feeding me bowl after bowl of the stuff. A common practice with grandmothers, no?
How I wish I could have made her a pot of ghormesabzi yesterday, in return for all the loving and feeding she blessed me with over the years. 

This was my first visit to her nursing home. The place, like so many of their ilk, smelled like urine and chemicals. There were grey-haired people parked in their wheelchairs in the foyer, noticing us and not noticing us. An occasional outburst of elderly indignation would drift down the halls every so often. However, the staff seemed genuinely friendly, and the floor treatment was  a very nice, modern, reddish hard-wood. So much more uplifting than linoleum! 
I did experience a ripple of surprise as I entered my grandmother's room and saw that she has evidently reached what must be the very brink of the end of her life. The only bits of her body she's able to move independently anymore are various parts of her face. We saw her mouth in action when Dr. Dad fed her a cup of yogurt. Her lips puckered out to receive each oncoming spoonful, even though her eyes didn't appear to register either the cup in his hand or our basic presence. 
Her hands are locked into balled-up fists, and sometimes her nails get so long that they cut into her palms, so tightly is she clenched. My aunt tracked down some clippers to fix this problem, and as she worked her mothers' fingers apart, I saw some expression flicker across my grandmother's face. Her eyebrows furrowed and her nose wrinkled in what must have been either pain, frustration, or annoyance. Then, once we changed our clipping methods, her face relaxed into a blank slate once again. 

It's hard to see her laying there, frozen, unable to interact with the people around her. But connection is still possible as long as we are willing to touch her. (And why wouldn't we be?) I had no fear of stroking her hair, petting her cheeks, gently massaging her shoulders, or even wiggling my index finger into her balled-up fist. This she held on to, like a little baby might, for quite some time.
I guess the sadness comes from her being unable to accept our love on the level of "normal" socialization. But touch works on an energetic level. I feel hopeful that, in whatever plane of life that she exists at the moment, she can receive our touch and feel some sort of relaxation and company. Really, I would have loved to have just curled up in her little hospital bed—so similar to mine!—except hers has inflatable pads to keep her shifting from side to side, which would make snuggling very awkward. Also it may have weirded other people out, I'm not sure. 

And yet there is more to this story of my day spent witnessing life's inevitable decline.
My sixty-two year old uncle also lives in this nursing home. He suffers from advanced Parkinson's Disease, and is no longer able to care for himself on his own. He is wheelchair-bound, though I'm told he gets around in a walker too, and somehow had been playing basketball with the other residents before we arrived.
Relating to him is somewhat more complicated than it is with catatonic granny. He understands when people speak to him, but the muscles in his mouth and neck have been affected by his disease in a way that makes speech extremely difficult. Dr. Dad seems to understand him better in Farsi, so I mostly just listened to them talk and let Dr. Dad fill me in here and there on the relevant bits. 
But how can I show him any familial love or support? We never had much of a relationship when I was younger and he was well. He developed Parkinsons when I was fourteen or so. So what do we do now? Talk about the weather? Do I tell him I'm sorry his life has turned out this way? Everything I can possibly think to say seems wrong somehow. Stroking of the hair and petting of the cheeks is clearly not appropriate in this instance. I tried just holding his eye contact and smiling benevolently, but he appeared kind of agitated by this, and why not? It felt kind of creepy to me, too. 

Then there is the issue of Norma. Norma is my grandmother's roommate. Norma suffered a stroke seven years ago that rendered her speechless, though she remains bright and alert and very responsive when spoken to. She's clearly taken a fancy to Dr. Dad, enjoys the company of my aunt, and seemed to like me too. 
She's also pretty mobile. She scoots around in her wheelchair, pedaling her feet on the floor to take her where she wants to go. She gets in and out of her bed by herself and seems pretty independent compared to many of the other folks in the place. 
When you say something to Norma or ask her a question that makes her happy, her face lights up and she breaks into a big Cheshire Cat grin that's usually accompanied by a very happy-sounding "Aaaaaaaaaahhhhhhh!" Sometimes she'll take her good left hand, raise it in the air and wiggle her index finger at you, seeming to indicate that she likes what you've said and you've made her happy.
When Norma is displeased, it's like a giant thundercloud crosses her face. Her eyes grow dark, her forehead creases, her mouth turns down and her whole complexion changes in an expression of ultimate dissatisfaction. This expression is accompanied by a stream of "No no no no nononononooNONO!" or "Go go go gogogogo GO GO GO!"  

The problem is, Norma has developed an unfortunate, intense, and obvious dislike of my Uncle. The only time I ever saw Mad Norma was when he was in the room. The rest of the time she was Mary Sunshine, glowing through her face, making lots of "Ahhhh" sounds, smiling at my grandmother and happily slurping the yogurt Dr. Dad shared with her.
Apparently her issues with my uncle stem from the fact that he can be very disruptive in his wheelchair. He scoots around very fast, and chips paint off the walls. I don't know if he has upset any of Norma's various personal effects in the room, but, well, the man has Parkinson's. The nature of his disease is to flail. All he wants to do is spend time with his mother. But the presence and personality of Norma—again, otherwise such a cheerful and playful spirit—appear to make this very difficult indeed. It seems like such a sad twist of fate. We all agree the staff should just make an exception to their rules and let my uncle and grandmother share a room to themselves. But as yet the staff has not budged from their policies. 

When Dr. Dad and I left the nursing home, the sun was shining, slanting at a late-afternoon angle that illuminated the colors of the flowers along the road medians and gas-station planters. (He continues to be so impressed by the vivid red flowers "they have up there," but the truth is, we have the very same flowers in the valley where we live. It's just that the air is so much more polluted at home that they look drab and dull in comparison. That sucks.) 
Anyway, back in the car, driving home with the glorious un-polluted sunset filling our car with clean, brilliant light, Dr. Dad seemed concerned that our time spent among these wacky, damaged invalids would be too depressing for me to handle on top of my own personal cancer. But it was not so.
On the contrary, I felt happy to have visited them after such a long absence. I'd rather see my grandmother at her most frail and feeble than not see her at all. Same for my uncle. Although his disease makes it hard to communicate, I feel like showing up and witnessing his life is still worthwhile somehow. I hope to make more visits to them while I'm in the area, before my procedure turns me into Bubble Boy and quarantines me to the hospital.

Finally, what does it feel like to have cancer—a possible death sentence, though we all know I don't really think of it that way—and be surrounded by people who are so much closer to death? 
I don't know if this is a maudlin thing to say, but nothing makes you grateful for the blessings you still have than being reminded that there are people more "worse off" than you. 
I have, as of yet, not lost a single one of my physical faculties. I feel tired sometimes, but never really feel sick. I've only experienced maybe a 7 on the 1-10 pain scale they make you use in the hospital, and that was brief. My mind is clear and I'm having spiritual epiphanies on a nearly daily basis. I walk the dog and breathe the air and take roadtrips and eat whatever I want and sleep 10 hours every night. I'm about to get married to the person I love. 
Sure, I have difficult days. I experience some loneliness and boredom. I miss Annie. I miss my friends. I miss living in a town that isn't Visalia. My parents and I have struggled, and continue having to work very hard understand each other as a group of adults co-existing in the same space. 
But overall, I can't shake the feeling that as long as my cancer or some complication thereof doesn't kill me—and I really don't think it will—then I have, in so many ways, been given a tremendous Gift. Having this awareness now can only enrich my life in every day to come, if I live to be 90 or beyond. Does it get any better than that? 


  1. Kia,

    I watched my grandfather slip away from Parkinson's for many years. Toward the end he was in a state like your grandma. Going to visit him was so painful. He looked nothing like the Papa I knew all my life. But I know that our affection reached him.

    Also: Do you watch "The Big C"? Sorry if you've already mentioned it. I've read most, but not all, of your posts. Anyway, Laura Linney's character reminds me of you: strong, brave, and so fucking FUNNY. :-)

    - AnnaMaria

  2. Glad you got to go up there and see are learning so much about life and love and they do travel well in life.

  3. Kia-
    It's funny how such a cruel disease can be considered a gift! But, I TOTALLY agree with you.
    ... and don't allow for a minute the thought that it might kill you. It's a (rather large) bump in the road, and the journey adds greatly to who we are and how we see things.
    -And Congratulations on your marriage! You are so beautiful!