How's Robb?

I'm unsure what I thought the one-year mark was supposed to bring us, so I'm at a bit of a loss for what to write as a retrospective. I was going to share some of the astonishingly kind comments that people had left on our blog, but I got really embarrassed by by the thought of re-typing the kind things everyone wrote. I know I haven't given proper thanks for the large and small acts of kindness that we've received over the past year. I don't have words to explain how much everyone's hopeful wishes, wild senses of humor, and prayers have meant to us this past year. Family. Friends. Doctors. Nurses. Therapists. The sweethearts and angels at the insurance company. Total strangers who took a moment to wish us well. Everyone. We want to thank you all. And who knows? Maybe we'll get together some time, not so far from now, and go hiking in Nevada. Looks like fun, doesn't it?

Robb and I are both huge fans of the movie " Amelie. " Among the other delights this delightful film has to offer, is its delicious color palette. Each scene, it seems, has a green area, a red area, and a punctuating Blue Thing. You can almost make a game out of finding the Blue Thing in each scene. We've noticed that you can do the same with the Orange Thing in our recent blog entries.

See that list to the right of this photo? It is a nifty way of linking to the recurring themes of this blog. So, if you're curious to read what we have to say on the subject of orthotics, for example, you can click "orthotics" and all the blog entries that we have tagged with that word will be available for you to peruse. Interested in all the demented things we've written, but don't want to go slogging through all the essays on doctors visits? We've set that up for you, too! And in case you're wondering what this strange photo is all about, I'll be more than happy to tell you. Although I'm a pretty adventurous knitter, I have never experienced the urge to knit socks. But when Ashley asked me to knit a sock for the upcoming show at Berkeley Repertory Theatre, I jumped at the challenge. I started this last night, and have ripped it back about three times. But now I've got the toe under control. Next challenge....heels! And once I get thi

Not surprisingly, I passed my cold on to Robb. We are now exploring the differences between "injured" and "sick." Interestingly, the cold is so strong that perhaps for the first time, Robb is not constantly aware of having a spinal cord injury. He is coughing non-stop, but amazingly, this isn't causing all sorts of back pain. Robb observed that cold medicines may even cancel out the effects of spasiticity. It doesn't seem worth it, somehow.

... It doesn't sound all that exciting but everyday activities like doing chores around the house and running errands have lately become the focus of my loftiest ambitions. As my physical capabilities increase (I can stand up for longer, bend deeper, lift more...) I'm finding that the real challenge now for me is budgeting my energy level. What this generally translates into is "choosing my battles." In the past, as with most people, I would look at what needed to be done and then figure out what could be accomplished in the time allotted. Now, for me, it's no longer an issue of time management but activity management. I'm beginning to learn the equation: X amount of activity equals x amount of muscle fatigue and spasticity resulting in ever-diminishing amounts of time to accomplish any task. It's a cruel calculus. In the course of a day I can walk down to the store and carry something back or go to the therapy center and work-out-- but n

Ken-ichi , one of my Flickr contacts was so taken by the mapping project, that he wrote about it on Localoaf , a blog he contributes to. Now, is that local-loaf, or local-oaf, I wonder?

I'll admit it. Prior to Robb's accident, much of what I knew about spinal cord injuries came for watching television and the movies, and shamefully, I absorbed a lot of these medical "facts" without giving them a lot of thought. When a character had suffered a spinal cord injury, they were usually said to be "paralyzed from the {insert body part, here}, down." In my cartoon-image-making mind, I envisioned a sort of invisible equator girdling that person, below which they could neither move nor feel anything. Actually, my cartoon-mind made a red, dotted and yet invisible line that was about two inches thick, which tells you a lot about how I see the world. I was discussing this idea with my sister, and she admitted that she visualized a human-shaped glass of milk, that was filled with a certain amount of paralysis. Unsurprisingly, things are more complicated in real life, than the way they are depicted in the movies. Robb has paralysis, but the amount an

Robb's new approach to walking really is an amazing improvement. When he makes an effort to use his shoulders, and walk more symetrically, he walks as quickly as I've seen him walk in the year since his accident. The problem is that he still needs a cane (for stability) when we walks outside our home, and that gives him a very assymetrical gait, and doesn't allow him to use his new-found style of walking. Perhaps we need to outfit his trekking poles with little rubber feet, and have him use to poles for walking.....

Among the things I'm working on with my therapists is becoming more aware of the subtler aspects of what they call "body mechanics." Usually a day or two after one of these sessions I start to notice how a particular movement will influence some aspect of my walking. Today, while working out at the therapy center's gym, I experienced this yet again. The idea that my therapist, Lori, had planted in my mind was that by engaging my shoulders in my stride I could distribute the natural movement of my spine to include the area above the fused vertebra instead of involving only the area below that. At the time she introduced this idea, I have to admit, it didn't seem like it would make that much of a difference. Today, though, I was walking on the treadmill at the gym and as I was approaching my cruising speed (about 1.8 mph) I started getting some very familiar jabs of pain in my back. I thought about how I might be working the muscles of the lower back more than n

These are actually photos from a few years back.... But they may as well be current. I'm flat on my back, covered in pussycats, drowning in tea, and attempting to focus long enough to re-read a few favorite books.

Today, we had planned to get together with some of our friends, and go letterboxing in San Jose. However, the universe had other plans for us. I spent the day in bed with a nasty head cold. It is strange to have Robb caring for me. But he certainly makes some tasty soup! I really, really hope this cold goes away as quickly as it came.

Some weekends, Robb and I do not go out into nature. Occasionally, something else catches our attention. This week, I stumbled on some photos of St. George Spirits , a "craft distillery" on the old Alameda naval base. I thought the place looked interesting, so Robb, Christine and I set out for a tour. The distillery did not disappoint. The tasting room was very nicely designed. (The display of fruit-infused vodkas looked just like creepy medical displays of preserved specimens in formaldehyde. Like Babies in Jars. Nice.) The stills were beautiful, as was the wooden ceiling. The building itself was impressive. A 65,000 square foot converted World War Two era airplane hangar. This was just one tiny corner of the space. We gawked. And we tasted. We laughed And then we went and had lunch.

Although we haven't completely figured out how we're going to paint all parts of the floor for the next show, I decided that we should at least apply the first coat of paint, and let it cure over the weekend. My intern Sheri took this photo. I think it gives a very good sense of the scale on which we work. This is going to be a huge math project, and I'm really going to miss Robb on the job site. I'm perfectly capable of doing layout, but when the phone is ringing, and people are asking me questions, I always worry that I'll lose focus and make a mistake. When I put Robb in charge of any math or layout projects, I had total confidence that everything would be perfect. The colors on the floor reminded me and Sheri of food, particularly of Neapolitan candies, those stripy coconut sweets made by Brach's.

I just got home from a physical therapy appointment and I'm marveling at how I can be so wiped out! On days I go to the therapy gym and exercise on my own, I generally workout for an hour and a half to two hours. That feels like nothing compare to the 40 minutes I just had working with my therapist. What was I doing? Small, careful movements. The big difference, I guess, is the amount of focused attention paid to isolating some very weak muscles. And, oh yeah... On Sunday we had a great time up near the Cliff House in SF test-riding recumbent trikes with the wonderful folks from the Cosmic Vehicle Center (yes... that's right "Cosmic"-- did I mention we were in San Francisco?). I've been dreaming about getting back on a bike for a while and now it looks like it will be happening soon. These things are a blast to ride! The best part, though, is that I don't have worry about my balance problems like I would on a two-wheeler. Nor do I have to look for a plac

I think I need to clarify the image I may have created, of me and Robb hiking all over Northern California. We do get out, and try to have outdoorsy adventures, but these are generally accomplished at a very sedate pace, and for short periods of time. Secretly, I think this is why Robb has been so generous in his gifts of optics. He can mosey along the trail at his current not-so-speedy pace, and I don't get impatient, because I'm busily trying to get my zillionth photo of a white-crowned sparrow, or something. Last night was opening night of The Pillowman, at Berkeley Repertory Theatre. Because of his limited "sitting tolerance," Robb only lasted through the first act. Our friend Gaby also left at intermission, but that was as a result of the disturbing subject matter. We may not have as many long adventures as we used to, but we do savor every bit of fun we do have. Neither of us regret the change in our lives. I think of this as eating a few really high qua

It has been a month since I had possession of our new car. As of this writing, there our car is still sitting in the parking lot of the company who installed the (inappropriate) adaptive gear. It seems that there has been some kind of horrible communication error, and that all parties are upset with each other. I don't know where things stand. I can't get answers. I want resolution. I want peace. I want my car back.

I will never take living in the San Francisco Bay Area for granted. I never tire of the Pacific Ocean. I think that the beauty of this place has contributed to Robb's recovery, because we are inspired to get outdoors and explore. See that hill, leading down to the ruins of the old Sutro Baths? See the wind-swept trees at the top of the hill, and that long, long staircase beneath them? Robb walked all of those stairs on Sunday. Okay, maybe he didn't exactly zoom down those stairs, and maybe the descent wasn't particularly graceful, but he did do it. I did a bit more clambering around than Robb, as I was hunting for a letterbox. The ruins of the old baths are really mysterious and evocative. Even if the human bathers are long-gone, "taking the waters" is still a popular past-time. A Ring Necked Duck swims in the ruins of the baths. This is my first photograph of this particular species of duck. The always amusing American Coot. I think that late-afternoon

Today we met up with Kara , Lisa's new intern Sheri, her friend Boris, and went to the Anselm Kiefer show at the SFMOMA . This was the first museum exhibit I've been to since the accident. I brought the wheelchair and was glad I did -- this is exactly the kind of experience which would be impossible for me without wheels. Lisa and I have seen Kiefer's work from time to time in the collections of art museums, but to see these sculptures and paintings together was fascinating. Wings fashioned from sheets of lead, the remnants of burnt books, star maps and enormous books (bound sheets of lead) are so rich in visual metaphor. Oddly, one of our favorite parts of the exhibit was an interactive "book" displayed on a computer screen. The original is too fragile to handle but the pages of this virtual book can be turned by stroking the corner of the image with your finger as if you were turning the page of a real book. It was especially satisfying for Lisa who w

Here's an interesting puzzle. Robb's new orthotic "boots" seem to allow him to walk twice as fast as he normally can. But when he is wearing them, he can only go half as far. Why is this? Robb speculates that the reason for this may be that the devices stimulate his feet so much that they cause a lot more neural spasticity. We don't know if this is the case, but it sounds plausible.

The production that I have been working on recently is very dark, and strangely funny. During rehearsals, I've found myself laughing at some really sick things. Nicely done, everyone!

We're still quite busy at work, putting the finishing touches on our upcoming production of The Pillowman , which is a horribly dark (and shockingly funny) play. I have a new intern, whose father suffered a very similar spinal cord injury as Robb's. She told me that she hasn't seen her father walk since she was in the first grade. I'm trying to get a project finished for my sister, but I took time out last night because I had theater tickets to the current show at the American Conservatory Theatre . Robb was exhausted, and stayed home, and I went out with my scenic painters. I wore the beautiful lace shawl that my brilliant sister knit for me this spring, and got loads of compliments. Martha is such a sweetie. She sent this shawl with a handmade pair of socks for Robb, and a note about how I might need some pampering, too. This little birdie was on my sidewalk. I know it is a dreadful photo, but it really made me laugh.

Things continue to be a bit solemn at our house, probably because of the fact that it is just about one year from the date of Robb's accident and spinal cord injury. Although the observations of these kinds of anniversaries are ultimately an artificial way in which to structure our lives, there is something very seductive about them. One can't help but asking, "am I where I thought I would be, at this point in my life's journey?" The answer to that question varies from day to day. Many months ago, we had asked Robb's neurosurgeon what the path of Robb's recovery might look like, if one were to plot it on a graph. Would it be a long, steady slope upwards? Would it be a staircase, with dramatic rises, followed by plateaus? Actually, we were told, the path is like a roller-coaster. There would be alternating improvements, and regressions. And Robb seems to be in the midst of a particularly bumpy phase, right now. While Robb has been, up until recently,

When Robb was in the hospital, we had hours of time together with nothing to do but talk. It seemed like no topics were off-limits, and so, for this reason, I actually recall this horribly difficult and stressful time with some odd fondness. Lately, Robb and I have realized that we have been avoiding discussing certain subjects. The really, really big subjects. Like, how we are both dealing with the notion that Robb is in the midst of a recovery whose outcome is a complete unknown to us. And like, how his recovery is going to happen or not happen, regardless of how hard he works in his therapy sessions. All the work he does, with the therapists and at the gym, may not be the thing that re-enervates his muscles. So little is known about "incomplete" spinal cord injuries, because each case is so different. Only time will tell. Additionally, we have been avoiding discussing what our lives might be like in the future, when the recovery period ends, and we are living with the

Yesterday, Robb and I went out to the Lafayette Reservoir, which, we had heard, was the home of bald eagles. It was a woefully bad bird-sighting day, but we did get to see some amusing mammals. Robb said that he had read a comment about this park, that if Disney ever wanted to turn the place into a theme park, all they would have to do is bring in the cars and lay down the track, and they would have a roller coaster. Although the trails were paved, we found this park CHALLENGING, in terms of wheel chair usage. Robb would go flying down the super-steep hills, leaving me in the dust, and then I would shove him back up the hills, pushing as hard as I could. We were clearly an amusing spectacle for the hundreds of dog walkers and baby-stroller-pushers on the trails. We make a good team, one older couple told us. But we already knew that.

Chomp Number One Regular blog readers may have noticed me whining about how so much of the household chores that Robb and I once used to share now fall on my shoulders. I've decided to stop complaining, and start taking action. So, this Christmas, I bought us a subscription to an organic farm , which delivers fruits and veggies to our front door. And today the first box was delivered. (Our friend Ellen made this bowl.) Chomp Number Two A box arrived in the mail from our friends Annalisa and Gary, containing two loaves of Amish Friendship Bread, and a bag of the sourdough-style starter used to make this bread. Strangely, this Amish bread tastes remarkably like Robb's Catholic mother's Jewish Coffee Cake. Unlike Robb's Mom's cake, one of the ingredients of this traditional baked treat is powdered vanilla pudding. I recall shopping at an Amish dry-goods store in Montgomery County New York, and being surprised by the powdered foods on the shelves, until I gave a

Robb in Kauai, Nov. 2005 It has been eleven months since I last went up on my toes... until last night that is. Granted, I was in four-and-a-half feet of water at the time but it sure felt good. Lisa and I had a great time swimming yesterday evening at the Berkeley High Warm Pool. I'm always on the lookout for some clear mark of improvement in my condition. The process of recovery has been so slow that I sometimes get discouraged thinking more about what I can't do than what I can do now but couldn't before. Last night, though, gave me the chance to note some real improvement. The last time we went swimming, back in November, I couldn't do very much. It was a good re-introduction to the water but my efforts were fatigued, tentative and weak. I thought I was in for more of the same last night. I got into the pool and immediately the water pressure set off a bout with spasticity. It felt like my legs were a big, wet towel being wrung out. I was able to release s