How's Robb?

Is what my friend Gaby shouted out when we drove past these very flowers the other day. I first encountered these flowers when I was working at the New Harmony Theatre in Indiana . But the locals in New Harmony were more demure, and called them magic lilies . These flowers have no foliage when they bloom, and seem to magically spring from the earth. Cute, huh? (What did you think I was talking about, anyway?)

When I was in the hospital and had very little working from the waist down, Lisa and I kept a constant watch on my toes. With my feet being the farthest parts from the site of the nerve injury, we looked to my toes as the bellwether for my recovery. Later, as I got up on my feet and moved around more, we paid less attention to the toes. But... Just this morning, as I was waking up I realized I could wiggle the big toe of my (mostly paralysed) right foot. What an odd sensation! Unless you've ever had a paralysed limb, there's really no way to describe this feeling. I guess it's kind of like suddenly realizing you can move small, inconsequential objects by just thinking about them. Anyway, it was a great feeling although my ability to do it vanished as soon as I sat up on the edge of the bed. Oh, well. It's an encouraging sign and there's always tomorrow...

We are just overwhelmed. I can't tell you what it means to us to have the support of this community of old friends, new friends, relatives and well-wishers. You all have certainly helped us get through the most trying time of our lives and I know you will continue to do so. Thank You, Thank You, Thank You. Robb

Robb and I were both so certain that he was going to be totally wiped out from our wonderful day of letterboxing. This isn't anything that we had articulated, because that's just too negative and grim. But we have both observed that he usually has to pay dearly for a day of real fun. We go sailing, and then for the next three days, his muscles are locked up in gigantic painful knots. However, we were pleasantly surprised. Robb had a lot of energy on Monday, and when I got back from work, I got to enjoy the de-cluuttered apartment that had been Robb's afternoon project. And speaking of projects, for some reason that I cannot name, I have been totally incapable of creating much of anything since Robb's accident. I suspect this has to do with the "living on pins and needles" existance that we have been engaged in. Everyone says that knitting, for example, is relaxing. But I find that I need to have a certain level of calm to even approach a knitting or se

Robb and I had a really wonderful time with the letterboxers of Northern California at the Bay Area Shoreline Shindig . I'm frankly a bit too tired to write much about it now, but perhaps Robb will have time tomorrow. The new wheelchair was a huge success. Instead of getting a short outing, we were able to be outside for the entire afternoon. At one point, Robb said that the chair was "too comfortable" and that he had to remind himself to get out o fit to stretch his muscles. Some of the paths were quite bumpy, and the suspension on the chair worked wonderfully. It didn't do as well on grassy hills, so Robb got out and walked those spots. I was actually having so much fun that I forgot to take many photographs.

When I heard Linguine pull the mango skin out of the garbage, the first thing I did was grab my camera. Bad. Really bad. (Does Linguine seem to have too many fang teeth, or am I looking at this wrong?)

In an attempt to be more ecologically responsible, I recently bought a bag of corn-based cat litter. I had read an alarming article on the down-sides of clay-based clumping cat litter, and wanted to try some alternatives. Cat litter manufacturers advise you to only add a small amount of new product to your cats' boxes, so that the cats don't freak out and reject the new stuff. Seems like good advice, right? About an hour after scooping out the cat box and mixing in the new corn litter, we heard a strange sound. Could it be? No....that would be too horrible for words.... Sure enough, there was our own Mister Firdusi with his face in the litterbox, happily munching away. Thankfully, a lot of yelling on my part made him lose interest, and we didn't have to rush him to the veterinarians for emergency stomach surgery.

This is the paint job on Robb's new wheelchair. It looks black, until the sunlight hits it.

Robb opted to get a non-motorized wheelchair, because we wanted something I lift into the car easily. However, with the amount of hills right around our house, I wonder of we made the right decision. Robb was joking that he would have to tie a rope around me, and have me haul him up the hills. Those crocodiles in Lake Merritt are mighty scary, after all!

Robb's new wheelchair was delivered on Tuesday, and as I hadn't managed to pack any food that morning, I came home for lunch. He and I walked down the stairs and we took the chair out on the sidewalk for a spin. (How fun! This chair is very nimble.) It doesn't look like much, although it does have a lovely prismatic candy-flake paint job (Robb opted not to get the American flag paint job). I had the idea that when I got home in the evening, we could take the chair out and go for a walk. But in fact, Robb was totally exhausted because his muscles have been in spasm for days on end. We did get in a very short stroll around the neighborhood, but the hills were almost too much for Robb. Additionally, the foot supports seem to be a bit low, as they kept "bottoming out" on the pavement. I got frustrated by this, which was bad. One of the big, big life-lessons I've learned through this entire experience is that I have to keep an open mind, and be prepared to

I think casual readers of the blog might get the impression that our life is one big hiking and sailing adventure. Actually, nothing could be further from the truth. Robb has very limited stamina, and so we don't engage in any very lengthy or strenuous activities. What we do, instead, is get ever bit of enjoyment out of what we can do. And sometimes we really pay for our fun. Take the shoreline stroll we did with Gina a while back. We took out the wheelchair and Robb got to move at a normal walking speed for the first time in ages. The trail was paved, but even so, Robb was jounced around in the wheelchair and suffered from bad back pain for much of the rest of the week. And in order to manage the back pain, Robb went back on the anti-spasm medication, which pretty much turned him into a zombie . And on Sunday, we almost didn't go sailing at all because Robb wasn't certain that he was going to be able to find the energy for the entire outing. But the good news is tha

Picture a pirate. Now picture another pirate, one who isn't wearing eyeliner and who doesn't look like Johnny Depp. Does this pirate, by any chance, have a disability? Perhaps he has a peg-leg , or a hook where his hand should be, or perhaps this pirate sports an eyepatch . Perhaps this pirate has overcome all sorts of difficulties and has a pegleg, a hook, and an eyepatch . Funny thing about that. There sure are an awful lot of disabled pirates out there. Ever since Robb was in the hospital at California Pacific Medical Center, and Kara gave us the idea, we have been looking forward to the day that he feels well enough to go sailing with the Bay Area Association of Disabled Sailors. And today we did. It was a glorious day, once the clouds burned off. BAADS is a pretty amazing group that is committed to offering (free) sailing experiences for people with all manner of disabilities. In this photo, a first-time sailor is steering the boat. Pretty cool, huh? She sure l

This week has been a challenging one, and we are late in thanking everyone who sent kind birthday wishes. Your sweet thoughts were very much appreciated! How about that beautiful Birthday Pie, courtesy of Gina?

Things have been in a bit of disarray this week. Robb has been having back pain for the first time in a long while. Is this because he is going without the brace, or because he is starting to get more sensation in his back? We're not sure. He has decided to go back on one of the medications that he had stopped taking because he is experiencing more "spasticity" in his legs and butt. Robb describes the way he feels on this medication as "limp and spacey and a little bit shaky." But the medication does work. It decreases the spasms so his muscles work more freely. He can walk more easily and has less back pain on these drugs. I hadn't been able find the cable that connects my camera to the computer for a few days, so I have a number of photos that I've not shared previously, among them these great portraits of the family that owns the Chicken and Waffles diner down by Jack London Square. How about those atomic lights? The seats are upholstered wit

Today Robb spoke with the occupational therapist who does the driving evaluations at his new (yay!) physical therapists' office. This therapist, Steve, told him what Robb might expect at his upcoming hearing at the Department of Motor Vehicles. He thought that Robb would be interviewed, and that Robb wouldn't need to plead his case, and that furthermore the DMV wouldn't be interested in any information that a therapist evaluator might provide. Steve asked Robb how all this came about, if Robb had requested the driving evaluation, or if the doctor had, or if this was being "driven" by the insurance company. In fact, Robb's physiatrist ordered this, at the request of the insurance company. The Worker's Compensation Insurance company is keenly interested in helping Robb become as independant as possible. Robb feels that at this point, Steve didn't fully understand the nature of Robb's condition, and was perplexed as to why this evaluation was goin

I was warned a while back by several occupational therapists about the potential catch-22 when someone in my situation has to deal with the Department of Motor Vehicles. Their concern was that somewhere along the way someone involved in my case would inform the DMV of my condition and get my license suspended. Since I had no intention of driving in the near future anyway, I didn't pay much attention to this issue, and since I never heard anything official on the subject, I assumed no one had informed on me. I couldn't imagine then that I would be the informant. I got my license renewal in the mail last month, and dutifully checked the box indicating I had sustained an injury in the past year. Immediately after sending in the form, I got paperwork back asking for details from both me and my doctor. I figured if I filled all this out I could at least put my license on hold until I'm better. The next thing I got from the DMV was a letter informing me that my license was su

Some time ago, I asked Robb's neurosurgeon to describe, visually, the path of Robb's recovery. Would it be a long, steady slope? Would it be like a staircase, with plateaus followed by big steps up? He said that it would be more like an oscillating wave, with improvements and setbacks. It seems that we are in one of the down turn parts of the wave. Robb's energy is very low, lately. He is experiencing back pain, which he almost never does. Robb is dragging. Luckily, we were prepared for this, and are not despairing.

Every follow up visit with Robb's neurosurgeon is a learning experience. One lesson that we get to re-learn every single time is that Highland Hospital's medical appointment system is in total disarray; we are never in their computer which means that they have to wedge us into the doctor's schedule. I don't think a visit has ever taken less than three hours. Oh well... Unlike the last visit where the computer system crashed and only allowed our surgeon the briefest glimpse of Robb's CT scan, we were able to spend a considerable amount of time looking at and discussing Robb's "films." (CT scans and xrays are all digital now but are still printed out on the plastic films that we all think of as "xrays.") One issue that had been of concern to Dr. Castro-Moure was the proximity of one of the screws to Robb's aorta. Had the screw been too close to the aorta, it would have visibly distorted the blood vessel. As it turns out, the aorta is perfe

Here's wishing health and happiness to Robb on his birthday!

Our insurance company, sick of dealing with the incompetant record-losing staff at Highland Hospital, had Robb go to a new hospital for this CT scan . This time, instead of having the radiology records disappear into the void, we actually got copies of the scan on a compact disk. Robbb says that he "feels" the instrumentation much lower on his back than where it is actually located. I'm impressed at how well the curve of Robb's spine had been maintained, but am still rather freaked out at how crumpled looking the bone is. And the hardware....well, I never get used to how large it is. I can look at any number of xrays and scans, but I still can't quite wrap my brain around where exactly the hardware is in relationship to what I see when I look at the skin on Robb's back.

Since yesterday was for Robb, a rather exhausting day, we opted to take the wheelchair out on the San Leandro section of the Bay Trail to extend the amount of fun we could enjoy. I have to say that this chair is the heaviest, most clunky, hateful device I could imagine. But Robb got to move at a normal walking pace, for the first time in a long time. I'll be very happy when the new lightweight custom fitted wheelchair arrives. Robb thinks that the leg pieces for the current wheelchair weigh more than the entire new chair will. Robb didn't use the chair for the entire afternoon, in any case. He did a fantastic job of walking on the rocky beach. He said that keeping his footing on the rocks and in the wind involved a lot of strategy and focus. But considering that a few months ago, Robb was moving at a snail's pace, and having difficulty negotiating city sidewalks with a walker, I couldn't be happier at how far he has progressed. Gina took a break from wheeling Robb

We're still in the midst of a whirlwind of visitors, so any deep reflections on life or Robb's condition will have to wait. What I will say is that Robb seems to be better at anticpiating his energy levels (which fluctuate on a daily basis), and so we able to better plan our activities. Saturday morning, Gina went out for breakfast with some friends, and then we bought the makings of a picnic at the Lake Merritt Farmers' Market. We drove up to Sonoma to meet up with Sten and Rebecca. The weather was glorious. Robb was hungry, and needed to sit down, so he skipped the wine-tasting, and instead set up our beautiful picnic lunch. Somehow we managed to forget to pack a knife, but if the past six months have taught us anything, it is to use what you've got, and to adapt. We ate like Lusty Peasant Folk. Gina tried to figure out a business plan for creating a holistic healing academy of mime, which would allow her to live in a tree house in Sonona County, and entertain all

Loyal blog readers have undoubtedly noticed that the frequency of postings to the blog has slowed down considerably. We're fine, but we're very, very busy. There is lots to report, but I haven't had enough time to collect my thoughts. Robb's parents just left, after a lovely visit. And did we ever show them California! Shorelines! Sunshine! Food! Architecture! Their Very Own Earthquake!!!! Right now, our pal Gina is visiting. We're heading off to wine country later this morning. We'll see how slow-walking winery tours work out. (Not to mention a fairly long car ride...) We'll be meeting up with Sten and Rebecca, which promises to be a lot of fun. Here's a photo from the restaurant last night. The other thing that is keeping me occupied to trying to get Berkeley Repertory Theatre's new scenic studios in shape. I've been painting walls and floors for weeks and weeks. Am I a little sick of it all? Maybe. But the new shop is going to be so glorious,