First full week at Bethesda

So. For the past few months, Bob's new favorite TV show has been Ghost Adventures, on the Travel Channel. Three dudes truck 'round the globe in search of haunted places, in which they willingly locked themselves up for the night, and attempt to document paranormal activity, all for the pleasure of the viewing audience. Real deal or staged, it's scary stuff, man. They employ night vision cameras, "spirit boxes" (which, supposedly, capture voices and messages from the beyond with radio waves. Huh? Yeah. That's what I said. Still gave me the creeps, hearing those scratchy words played and replayed . . .), all kinds of real-live ghost-busting equipment. The trio taunts and cajoles the spirits of those who have gone before, trying to get a peep out of the ghostly entities, if they can . . . often, what they get is more than just things that go bump in the night—they're hit, scratched, terrorized with screams, unseen things crashing, objects thrown at them, poltergeists hissing their names, doors slamming shut . . . for a girl who was queen of telling ghost stories at slumber parties "back in the day," (and was even, proudly, accused of being a witch by a friend's dad. The red hair always does me in . . .), I get chills watching this. . . whether or not it's real is beside the point, they do a great job of freaking me out. Maybe the setting in which I watch it has something to do with it . . .

So. I'm sitting there, watching a full episode tonight with Bob, and suddenly realize what's wrong with this picture. Often, the haunted halls of the show are abandoned hospitals, sanitariums, asylums . . . in other words, buildings not unlike what we are sitting in tonight. It occurs to me that when I leave, I leave alone, down three flights to an empty first floor, through a long, deserted skyway to the parking ramp. All. By. Myself!!! When the show is over, after getting Bob into bed and kissing him goodnight, I speed-walk as fast as I can, my index fingers in the shape of a cross in front of me, out to my car. Wait! Was that a baby crying? In the parking ramp? . . .at 9:30 pm? . . . and no one's around? . . . no, no, no, no!!!!!! I am suddenly convinced that the parking ramp at Bethesda was built over the site of an orphanage where all the kids died of an outbreak of cholera in 1898. . . Get in the car, now!!!!! This is why I don't watch much TV, peeps . . .

A long week for Bob. He has PT and OT twice a day; I've sat in on most of them with him this week, to see what they work on, ask questions about his progress, the expectations, goals . . . they started out just coming up to his room, doing some exercises, having him walk a few steps with the walker. On Wednesday, they brought him down to the therapy floor, for a "real" session, and he's done all his sessions there since. He has therapy twice a day, six days a week, usually PT in the morning and OT in the afternoon. For those who are unclear on the difference, PT typically focuses on working the lower half of the body, with exercises and stretches that work on strengthening muscles, increasing range of motion, movement and mobility. OT addresses the upper body, and typically also focuses on daily living skills—dressing, bathing, household chores, etc. There is definitely some crossover in what each therapy does, but often, a patient literally has to start from square one, learning a whole new way to live their life, with a body that has been drastically, permanently affected by the ravages of a disease or injury . . . as one website I read put it, "A patient often says they want to be able to walk again. I ask them, 'When you get to a door, how are you going to open it?'" Learning new ways to do old things . . .

The sessions are painfully exhilarating to witness. From my point of view, I see so much progress, so much strength and endurance already, in just a week and a half being here. My heart swells when I witness the steps he makes, the new thing he's learning to do again, a testament to the vast capacities of the human spirit. But I also see how absolutely exhausting it is for him, how difficult, physically and mentally, to do some of these very simple tasks, things he used to do effortlessly a year ago. To Bob, all the sessions underscore just how much his life has changed and will never be the same again, how much he can't do right now, how much he has to relearn, how very far he is from being able to function in life, even with me by his side, much less on his own at home. . .

Even though I see so many tiny glimmers of improvement every day, and those who see Bob only ever few days (e.g. his therapists) see remarkable improvements, right now, it's not what Bob sees or feels. Right now, what he sees and feels is that he's still so very dependent on everyone around him, so far behind where he was just prior to surgery. At least then, he could get in and out of a car, he could dress himself, he could get himself into the shower, he could move about the house, could go up and down stairs, all of that slowly and with much pain, but he could still get it done. . . at this point, he can't do any of that by himself. Couldn't even put a pair of socks on yesterday. . .

Much of it is being so de-conditioned, having lost so much muscle mass and strength, due to the wasting effects of the cancer itself over the past year, along with the heart attacks and countless other complications that did their part to add to the picture. With that alone, he has a long road get to the point where he was prior to surgery. The surgery itself has presented a whole host of new problems, with the nerve damage, the partial loss of functions on his right side, and all that goes with that. The surgery site right now, and will for a long time, interfere with movements and range of motion . . . he has several tubes running in and out of his body that make it a complicated process to do anything—we have to drape this here, wrap this one over there, making sure he doesn't get tangled or trip and pull something out. It's a delicate, complicated dance we do, to get him out of bed, into a wheel chair, to the bathroom, but one we've choreographed almost to perfection by now. He knows just which way to turn so his IV lines don't entwine with the wound vac tube as I make the instinctive bend and reach to move his Foley cath and tube from the bed to the walker, then he stands, slowly pivots to his wheelchair and sits, as the final draping of tubes wrap around, behind and settle into place. Take that, Dances with the Stars . . .

It took a whole year to get to this point; it'll take a long time to recover. Day by day, step by step . . . Easy to say for me, for someone who isn't in his place, who isn't dealing with all this first-hand. I can put my shoes on. I can step into the shower every morning, I can make breakfast, I can wash dishes, I can get in the car and go wherever I want, without a single thought about what I'm doing, how I'm doing it . . . the other night, we had a pretty intense conversation about all this . . . right now, he's not encouraged by our cheerleading, our happy faces, our "way to go!'s" There's nothing right now to celebrate, still no light at the end of the tunnel for him. Still no idea of how his life is going to be, how much function he'll regain, whether or not his body is cancer-free . . . for us to sit and cheer him on is almost insulting at this point. Who gives a shit if I can sit up and eat by myself? he asks . . . I get it, I totally do . . .

I walk the fine line of being too Pollyanna or being too realistic about all this. I want to be encouraging and positive, because I do see improvement, I swear to god, every day I see him, hell, sometimes even with every hour. But I'm not the one with the broken down body, I'm not the one whose life has been torn to shreds, and handed back in a form totally unrecognizable. The harsh reality is, if Bob's going to get better, if he's going to get a semblance of his life back, the only way it's going to happen is by some huge efforts on his part. And that reality bites, big time. In spite of the horrific shit he's already been dragged through for a year, now, he is the one who has to do the very hard work to regain his life back. The doctors, nurses and therapists and we are here to help, but Bob is the one, ultimately, who is doing the hard work. Who has to do the hard work. Even in rehab and recovery, when he's healing, he doesn't get a break. When people tell me God doesn't give anyone any more than they can handle, again, I say bullshit. People are handed things to them all the time that they can't handle. I see the people in Bethesda with bodies that are equally broken or worse off, even, than Bob's. Some of them may very well have been given more than they can handle, and it has nothing to do with God.

Do you want me to cheer you on, I ask, or be frank and say, yeah, your life sucks hugely right now, and no, we know nothing about what your future holds. It's scary as hell, depressing as all get out, and yeah, what's the point of all of it? The truth is, both are true. . . I simply don't know what to do, what to say, at times. . . I agree, it's not miraculous that you can now get up to the walker by yourself. It's not miraculous that you can walk 160 feet with the aid of a PT right now. The miracle would have been if none of this shit had ever happened in the first place. You didn't need a "wake up call," you didn't need several lifetimes' worth of shit dumped on you in a year's span, you shouldn't have to be the sacrificial lamb for everyone else in the world to "learn a life lesson" from—hell, I could list about ten people off the top of my head who could use a "life lesson" dumped on them, myself included in that list . . . It's not fair, it's not right, it's the worst thing I could ever possibly have witnessed in my lifetime, to see one person suffer as much as you have. . . but I still am in awesome wonder at the progress you've made, in the weeks, months, in the year, I am still astounded at your determination, your fierce will, your intense fighting spirit to get through this. . . I see it . . . I truly, honestly do.

I also get his anger, the frustrations, the complete and utter annoyance with people who cheer him on, me included, who say, "Yeah! Bob! You're doing great! You look stronger today! I can see it!" It's the same anger, annoyance, frustrations I feel when I talk to someone who asks me about Bob and says, "I read the blog and am so happy to hear he's making such a great recovery!" No wait, is that really what I said? Let me be a little more honest, a little more vivid about what's going on . . . I understand what they're saying, it's what I say to Bob, to be hopeful, positive, encouraging. And I appreciate it, am grateful for the kind words, in my heart, I know what they mean, because they mean it fully, truly, with all their heart. As I do. It's the same thing I mean when I tell Bob I'm astounded at his progress. The anger, if that's even the right word, I feel is because no one will ever know the horrors I've witnessed Bob suffer and therefore no one has the right to say everything will be alright, because no one knows. Period.

The anger Bob feels is that no one can get inside his body and truly understand what he has gone through and continues to face. I get it, it's all part of the journey, but it's a tough stretch . . . It ain't pretty, it ain't great, it ain't a happy time, it ain't easy and the honest truth is none of us will ever know, in our lifetime, what it's like to have to work so hard, physically, mentally, emotionally, spiritually, to regain our lives back, after having it ripped apart, for no reason, with no explanation other than just because. And to be clear, it's not all anger. The anger is just a part of the big complicated journey. A necessary part . . .

Bob was feeling especially down a few days ago, talked about missing the dogs a lot; it's been two months since he's seen the pups. I got the bright idea that I could bring the dogs to him—y'know, just load 'em in the car, haul 'em on down to the hospital. Penny and Jim could wheel Bob out in his wheelchair, to the park across the street from the hospital where the pups and I would be waiting. . . it'd be a big happy furry reunion, Bob and his doggies. Easy peasy, right? Well one dog is 13 years old and arthritic, can barely get up off the floor these days, the other is the poster-pup for ADHD and vomits every time he gets in the car . . .

Undaunted, I loaded up the car with doggie blankets, water, leashes and all this morning. Both dogs knew something was up—I let Gaia outside, she walked right over to the car, like she used to when we'd be getting ready to go camping. She still recognized the signs, even though it's been a few years since we've gone anywhere with her. But, the problem is, over the past year, her age has really caught up with her, and her back legs have become weak and arthritic. It's been a slow progression, but really has become evident this past year. She has a difficult time getting up from lying on the floor (mainly hardwood and tile), and now and then, her hind legs will give out on a walk. She recovers and can continue walking, but it's evident our 13 year old furball is getting old . . . we have a doggie ramp that we've been using the past few years to get her in and out of the car, as she's no longer able to leap into the back of either vehicle.

Today, she couldn't even use the ramp, but not for lack of trying . . .ol' girlie gave it her all, but after several attempts, she finally backed down off the ramp and her back legs collapsed underneath her, unable to get back up. I struggled to lift her backside so she could get her legs up underneath her again, to get her out of the driveway and back onto my hosta bed, where she likes to lie (yes, my hosta bed). We had to give up. I sat down next to her and started crying as I called Bob to tell him that my grand idea just wasn't going to happen today . . . maybe today was just a bad day for our big girl . . . I know Bob was sad about it, though he tried hard not to let it show in his voice, sad about Gaia not doing well, more than anything. I'm sure, he's wishing he could be home with his beloved furry "firstborn" and crazy "third born" now more than ever.

Anyhow, long days, painstakingly slow progress for Bob, but progress, nonetheless. It's how it has to be. Like it or not. Like Penny keeps saying: Everything is scary and hard the first time you do it, Bob. Like stealing, she said. First time is scary, until you do it a few times, then it's no big deal! Ummmm, Penny? Are you trying to tell us something . . .

Pain meds are being weaned, appetite is slowly, steadily improving, hair is getting really long. Dude needs a haircut in the worst way. . . might need to bring the shears in and at the very least, trim around his ears, clean him up a bit. . . very tired right now, more later. xxoo