The one thing I remember hearing repeatedly in those days from those who knew Joy best was that she would overcome this ordeal because she was a "fighter." Having lived with Joy for 20 years, no one knew that better than I. It just didn't seem possible that this dynamic, energetic and talented person could be brought so low and then held down for any extended period of time. I still believe this to be true, but but my definition of an "extended period of time," has by necessity been adjusted. Joy's injuries were severe and her deficits are significant. I remember that as her ventricles were shrinking back to normal size and her brain was returning to its normal shape our friend the neurologist Chuck Smith expressed disappointment at the amount of brain damage that was revealing itself on the CT scans. It is going to take a long time for her to regain her ability to take care of herself and we need to face the possibility that it may never happen. Or, as Chuck put it, we should "expect the worst but hope for the best."
What Joy does have, and what I believe might eventually bring her to a level of recovery she would find acceptable, is her indomitable spirit. Although this is a quality that is difficult to quantify, it's one that Joy possesses in abundance. It's what has allowed her to progress and surprise her doctor and others who did not know her before her ordeal. It's what continues to surprise us all now. I remember the head physician at the Carmel Mountain facility scoffing dismissively at my statement quoting a therapist who had said Joy might walk again. Well, she's walking a mile or more a day now. She still needs assistance with her balance, but she's walking energetically. As my friend Gary Nagle, who owns an assisted living facility, said, "Don't listen to the doctors."
She's also becoming more assertive and difficult to handle. Occasionally she's disagreeable and uncooperative, especially at night. My friend Jim Simpson believes this is a good thing and I agree. A week ago, Joy was not cooperating with our attempts to get her into the bathroom and ready for bed. (Sometimes she resists for no apparent reason.) Because both the nurse and I were very tired and wanted to go to bed ourselves, I exerted some gentle force to get her into the bathroom to brush her teeth and dress for bed. After we finally got her in bed, she did what she used to do when she was mad at me: she refused to look me in the eye and ignored me. When I apologized and told her I was only doing it for her own good, she said, "Get lost." It shocked me, but I had to smile. She's becoming a bit combative again. I think it's a good sign.
On another day recently, she was working with her nurse Natalie on some interactive object-identification program on her Ipad. I was walking by and stopped to try and encourage her in her efforts. She wasn't having much success and I said something that in hindsight sounded a little silly and patronizing, although I was trying to be pleasant and encouraging. She picked up on it. "Bullshit," she said.
Most of the time Joy is happy, loving and respectful to me, her nurses and guests. And she is trying to be helpful with the chores. One night, when she refused to go into the bathroom to get ready for bed, she chose to wander into the kitchen, where she began to tidy up the place a bit. I had left a small pot of leftover rice on the stove that I had planned to feed to the dogs in the morning. She picked up the pot, took it into the pantry and put it in the exact right spot on the shelf with the other pots--rice and all. (It's the effort that counts.) She also helps Sue fold the laundry and sometimes wipes the counters when I'm cleaning up the kitchen.
(I'm reminded of a funny story Joy told me when I first met her back in 1991. While visiting her in Los Angeles, I always offered to do the dishes after she had cooked a meal. She was impressed by this and told her sister about it. Susan said, "Encourage him. Even if you have to wash them again when he's done.")
Some good news that marks further progress: we have discontinued her j-tube feeding. She is eating solid foods entirely now. We hope to have the j-tube removed in the next few weeks. She's down to three prescription medications which are sometimes difficult to get her to swallow but we are getting more successful at it daily. She's drinking more and still pockets liquids and food on occasion, but we have come up with some clever ways to get her to spit out what's been in her mouth for too long.
She's re-enrolled in physical therapy and is now also receiving speech therapy for the first time. Her speech therapist, as is the habit of all therapists, asked at our initial meeting what my goals were for her and I recited the usual litany: I'd like her to be self-sufficient, to be able to communicate on a basic level, to regain her sense of balance and perhaps to reach a level of dexterity that will allow her to resume doing the things she loves to do: paint, sew, garden and cook. "I'm not sure those goals are realistic," she replied, "But we will try." These types of statements tend to deflate me a bit, but then I think that the therapist is just another professional who didn't know Joy before her injury, and that it is a mistake to underestimate her spirit, her drive or her determination to refuse to accept less than what she wants and deserves. I still have hopes that she will prevail in her struggle, that as she gets stronger and more aware, her ability to contribute to her own recovery will increase.
Here's a portrait of Joy taken in 2009 while she was on a cruise around Tahiti with her sister Susan. Susan and Joy customarily took one trip together per year to places like Alaska, New Zealand, Russia and Scandanavia or the Caribbean. Of all the trips they took, I believe Joy enjoyed this one the most, although she was very impressed with New Zealand. I love the photo because it captures the essence of her personality when she was relaxed and enjoying herself.
And here's a picture of Joy sipping champagne on New Year's Eve:
Thank you all for your prayers and best wishes. 2011 was a year that upended our lives. The love and support of friends and family helped us through it. To be honest, I had hoped we would be further along on the road to recovery by now, but it was not to be. I am grateful that Joy is alive and getting healthier. All we can do is hope, pray and work as hard as we can with her.
Love from us to you all,
Doug
