The main reason I get so very irritated when people tell me I'm brave just for leaving my house is that, despite the fact that I am fat, obviously a lower limb amputee, and female, and yet feel not the slightest urge to cloister or emburka myself over any of that, I am also not really brave. I usually seem to manage to scrape together whatever courage I need to get me through something unpleasant that I need to do, but usually not immediately, and certainly to no remarkable degree. Probably not more than you. Likely less.
I've already talked about my fear of going through airport security for the first time in the last twelve years, and my fear of experiencing airplane travel in changed physical circumstances. And those were the two biggest fears I had with regard to my recent brief trip to California. But there were so many more! You can have no idea how many more! I was afraid of being in California again for the first time in 12 years. I was particularly afraid of being in Southern California, which I happen to loathe like a pit of disease (even though there are also things about it which I love). I was afraid of interacting with my family, many of whom I hadn't seen or spoken to in over 20 and up to 35 years. (We Are Complicated. And I am a liberal, so liberal I refuse to rejoin the Democratic Party of sellouts until the last possible moment before the primary in 2008. And they...are not.) I was afraid of seeing one of my best friends and her family, even though I truly love her and we hadn't seen each other in seven years. (I'd never met her son, except as a bump in her belly all that time ago, or her dog.)
I was afraid I would fail.
I was afraid I would fail spectacularly, in such a way that would cause pain, gratuitous drama, and other problems for other people. I'm actually okay with failure when it's just me. Remember, hubris is my muse. But when I mess things up for other people, people I don't know being less important of course than people I do know, like my lovely young niece whose wedding this whole trip was about, or my sister (mother of the bride) who really wanted me to come for reasons I couldn't completely fathom, especially since I was so sure I was going to fail her and cause her pain, well, when that happens, I have a hard time remembering why I want to live. My instinct, therefore, is to run from situations where I think I'm going to fail others, specifically when I think I'm going to fail hurtfully other people I actually give a crap about.
Courage, of course, is not defined by an absence of fear, but by doing what we need to do in spite of the fact that we may be pissing our pants in abject terror afraid. And look, even though I had all these neurotic fears, I went anyway. So maybe I am just a tiny bit brave after all. Or I was, at least while I was on this trip. I am not brave every time I leave my house. C'mon, I still balk at down escalators sometimes. But I did screw up enough of my wobbly guts to go on this trip, and that did take something.
Attitudinally I addressed this trip, which I realize would be almost a nonevent in a normal person's life, in the true spirit of adventure. (Yes, I can hear you thinking "Please, a four-day trip to attend a wedding? Sara, what is your damage?" It's best you don't ask. Just take it as read that there is some.) The journey was very much about discovery. It was an opportunity for me to push myself very much outside my comfort zone in an attempt to make my niece happy, primarily, and my sister happy secondarily, but since logistics decreed that I would spend a lot of it away from my niece and sister, it was also a lot about me seeing what I could find out in my still fairly new physical circumstances and in this changed travel environment.
I would have experiences like getting on the train to go to North Station and having the conductor ask me if I needed help getting my bags up the boarding stairs, or getting off the plane in Long Beach and having the flight attendant ask if I was going to be able to make it down the ramp. I responded to both of these questions by smiling and saying, "I don't know. Let's find out!" (The flight attendant smiled back at me. The Massachusetts train conductor at 6:30 in the morning did not.) And then I would find out. Mostly I found out that I did not need help, that I could make it down a ramp or up some stairs or whatever. I can't remember a single instance, in fact, when I did need physical assistance.
Oh, wait. I take that back. When, almost home at the end of the trip, I got off the plane at Logan after midnight and my true love met me at the baggage claim, I was so sore, chafed, swollen, tired, and stressed (plus horribly sunburned; speaking of hubris, more on that some other time) that I was thrilled to let him help me however he could, and in fact whined that I had to get all the way to the car in the parking garage on my own power, that if I had to walk one more step I was going to cry. But that was it, really. And there would be no point in my trying to deny that happened, either, you know, putting a brave face on hindsight or whatever, because I did it really loud so that everyone in the airport terminal at that moment, mostly people who'd been on my flight, heard me.
See what I mean? Not brave, not really.
Up to that point, though, it is astonishing (to me) the number of times I was offered help, refused it conditionally, reserving the right to accept it after all if necessary, and then found out that I truly did not need any. I even kind of did it to myself by setting myself little challenges, not to prove anything, just to see what would happen.
The last time I traveled anywhere overnight was the last time we drove down to Rhode Island three years ago. I was still sort of new at the whole getting about the world as an amputee thing, but it was the same sort of situation: a leitmotif of that trip had also been about me trying to see what I could do. I left my wheelchair at home but brought crutches and a cane, but then it turned out I only used the crutches and only in the hotel room when I had my leg off. And it was fine. I had adequate not luxurious back-up available, but I also gave myself the opportunity to stretch myself and really learn the limits of my abilities. They were much farther out than I expected.
They were this time, too. This time I thought about bringing crutches and a cane, but I decided against it. I know, I know; I chronically lecture other amputees to bring at least a collapsible walking stick with them everywhere they go so that they won't find themselves stuck in a dangerous situation or having to turn down the opportunity for adventure due to uncertain footing. And I meant to bring one, really, but frankly I forgot. (I kind of always forget. This is actually more about absentmindedness than hubris, though the hubris might feed the forgetfulness.) As for crutches, well, I just thought they would be a pain to lug around, even though they'd go in checked luggage. They would just be extra. Since crutches and canes are not exotic items, I thought I'd see how well I could get along without them, and then if it turned out I needed some, I was sure I could acquire them in California.
Traveler's Tip Digression: Esteemed correspondent Jana informs me that actually crutches are pretty easy to find by shopping the local Goodwill in just about any U. S. city. She says she's found them for as little as five bucks a pair.
And oh, uh, incidentally, as useful as that tip is, I found it to be a bit of a PTSD trigger. Sometime when I'm feeling stronger, maybe during NaBloPoMo '07, I will tell the tale of what I went through to get a pair of crutches out of United HealthCare after my physical therapist had deemed my old wooden pair dangerous and after the hard, too-small, plastic handles on my walker had completely shredded the flesh on both my hands. Short synopsis: Even though I had just had my right leg cut off above the knee and did not have a working prosthetic yet at that time, yes I had to argue with them in order to get a pair and even had to get a doctor's prescription. But that's an even bigger digression than I intended.
Moving right along...
As longtime readers of this blog are aware, it has long been my habit when at home to go without my prosthetic, because frankly it's just not all that comfortable to sit in, and I do a lot of sitting. Before I got a working prosthetic leg, because my hands and wrists are essential to my career as an artist (though, yes, I would learn to hold a pencil in my teeth if I had to; please let me not have to), when I found that a walker shredded my hands and crutches crunched my wrists, I just went over to using a wheelchair all the time, and then after I got the working prosthetic, a wheelchair is simply what I used all the time when I was at home, unless we had guests. And that's actually been a lot of my life since then, being at home in a wheelchair, though I hadn't yet realized how very much. So for me to contemplate going four days without a wheelchair for the first time in nearly four years was a very big deal. Schlepping a wheelchair across the country and back when I really can use other things was out of the question, though. If I'd had to, I would've, but since I didn't have to, I didn't see why I should.
To go without either a wheelchair or crutches for four days, that presented a very big adventure indeed. I had become complacent with a specific toolset and a few available alternatives. Going with only the barest essential tool, the prosthetic leg and my physical strength, was going to feel quite primitive, like camping, probably a little awkward, and maybe more than a little dangerous. But I wanted to see if I could.
And I could. Of course I could. Since my prosthetic leg fortunately did not break while I was away from my prosthetist and state-sponsored healthcare coverage for four days (and there was no reason why it should, but these things do happen to people), it served me very well as my only tool for physical support other than my remaining organic leg.
What shocked the heck out of me was how little I missed the wheelchair. I didn't miss it at all, and never once even yearned for so much as a single crutch. I learned to wear my prosthetic to putter about my hotel room, and to just take it off when I wanted to sit and relax for awhile in private. I also found that even when very tired I had no problem simply hopping around one-legged on the carpeted floor at will, though I did wonder what that sounded like in the room below mine. (200 lbs. -- thump thump thump) I just didn't do that in the bathroom, because I feared landing in a puddle of bathwater the wrong way, flying onto my back, and ending up spending my niece's wedding in the hospital, not just broken but in an unfair cloud of attention-diverting drama, which would amount to just one example of the very kind of failure I've been talking about fearing here.
I brought seven books with me to read. I brought crocheting. I had a room with a TV and a tiny little chip of a balcony facing directly into the sun. In between family events, I could have spent every moment of my trip alone in that room, happy as a clam. Since I loathe Southern California so much, I half expected this would be my preference. However, Friday dawned and gave me six hours of a perfect day next to the ocean with no commitments. So I pushed myself out of my assured comfort zone and out into the world.
I even brought my plein air kit. See, I really was pushing myself. Besides, I still owe Bethieee a painting because the Tibetan lily never bloomed. (I waited and watched all through July just in case, and then my garden went to hell in the dry August.) So I thought I might find something interesting to paint, but as it happened I didn't have the time. But I was open to the possibility. I want you all to know that.
This is part of the walk I took that morning. (Click to enlarge.)
The Marriott where I stayed (courtesy of my sister; thank you, L) lists among its recreational amenities "Nature preserve, trail." I'm not sure, but I think this is what that refers to. This is the entrance from the border of the Marriott's self-described "Gatsbyesque lawns" to what I believe is the area called Lantern Bay Park in Dana Point. It's a very nice park, with the occasional bunny and squirrel and many, many ravens early in the morning. It is always at least dotted, from sunup to sundown, with physical fitness enthusiasts. It also appears to be completely wheelchair accessible. (Click to enlarge.)
Ramps encircle the hillside sloping down to the harbor, giving wheelchair users and people with painful joints (or ultrafit matching mommies with double-wide strollers) equal opportunity for a good public workout -- (Click to enlarge.)
-- alongside all the crazy people who instead choose to use the stairs wherever they appear. Crazy people like me. (Click to enlarge.)
Indeed, that is a lot of stairs. And now perhaps it is obvious how I could use six hours and not make so much as a single sketch.
Those people way at the bottom are going up and down, up and down as part of their morning workout. Someone has numbered the stairs with chalk, or probably chalk rock as we called it when we were kids, the local sedimentary stone, and the locals have devised a variety of personal routines around them. I studiously avoided looking at the numbers. It wasn't speed or quantity test for me. It was more about seeing what I could simply take in my stride, literally, no pun intended.
My stride up or down any flight of stairs is always very, very slow. This is because, up or down, I only have one knee that will flex at will, so every step for me is essentially a one-sided 200-lb. leg press. It's not even advisable to do it fast.
Naturally as I proceeded slowly while all these other track-suited health nuts were racing by me up and down, then up and down again, all in the time it took me to go a quarter of the way, I was congratulated for my bravery by strangers, but because I was in California, not New England, I felt so bold as to say, "For what, leaving my house?"
And the woman stopped for a minute, and because we were in California, not New England, replied, "Yes. Because, you know, a lot of people wouldn't."
"Well, where's the fun in that?" I laughed. And she laughed, too.
Yeah. I hate Southern California, but it is just so much easier to talk to people naturally there.
Now I am fond of saying that I didn't go through "all this" (amputation) just so I could sit on my ass for the rest of my life. Oddly, though, since I quit my job at Whole Foods a year ago, I've kind of been doing that. I work a sedentary career, and I've been doing it in a wheelchair. There've been lots of times in that year where I haven't left the house for days in a row just because I was busy working and the day got away from me. So I hadn't realized it, but one of the discoveries I made on this trip was that I am seriously out of shape. We are talking beyond chubby. Really, it's not even about the fat, though the fat doesn't exactly help. My cardiovascular health is at risk.
When I got to the bottom of this set of stairs, I crossed the road at that checkerboard intersection you can see in the above picture. The crosswalk signals are timed. I had to really move my butt to get across fast enough! And I was winded afterward! And when I got to the harbor to have breakfast, I had to stand at the rail for a minute and just breathe. I don't think I had even walked half a mile, but my blood was pounding in my lower back as though every vessel were screaming, "SH*T F*CK SH*T F*CK SH*T." And that was from going downstairs, and walking downhill. And that is when I realized that things were going to have to change when I got back to my real life.
I started thinking about my habits. I began to realize all the times and ways I had slipped, the eating every time my hypoglycemic true love eats (every three hours or there's hell to pay), even though I'm not hungry that often and anyway can't metabolize that much food, the mindless snacking, the fact that I had all but stopped walking even though I never meant to, that I was spending about 75% of my life on my ass and, while that means I have some serious upper body strength, toodling around my apartment on wheels and hauling myself in and out of the bathtub and then also occasionally standing up to do some yoga or stretch on the balance ball or get an ice cream dish out of the cupboard has hardly forced me into any genuinely aerobic situations for more than five minutes at a time in the past year.
Yikes.
I'll tell you what else I didn't go through "all this" for. I didn't go through "all this" just so I could be crippled by or even die of a stroke or heart attack in my 40s. And I have been quite clear on this all along. And yet...and yet... Somehow, my mobility got away from me. I just kind of casually let it go, and with it the better part of my real strength, my overall health. And that is not okay, not by a longshot, not while I have the power to do better.
Fortunately, I think I still have that power.
I made some other discoveries.
I discovered that both my grandfathers had diabetes, not just one. Even more reason to rethink certain practices, or at least start thinking about them again.
More discoveries:
At the wedding, I wore a dress. The Velcro® on my suspension belt is now so encrudulated with stray hairs and fuzzes that it doesn't reliably hold itself together anymore. So at the wedding, because I was wearing a dress with nothing to help hold my suspension belt up, the belt came apart and fell down. I had to find a ladies room and reattach it, because there is just no discreet way to do that in public. I noticed that my leg did not come off while I was running around (lurching around) looking for that restroom, and yet I didn't take any special measures to keep it on, just the usual way I walk, clenching my stump when I raise it to move my prosthetic leg, relaxing it when I put my weight back on my prosthetic. I also noticed that my unbound gait was a little better. Interesting. I tucked that into my brain for further thought another day.
I discovered that in spite of many of their politics my family are really very nice. My brother-in-law is a kind and funny man, something I must apologize for having forgotten. My brother is sad and lonely. My cousin D (who is one month older than I, seems to have similar politics to mine, and shares a favorite author, T. C. Boyle) is fun, thoughtful and creative, and her mother M is absolutely charming and quite possibly the genuine article as far as bravery goes. (And I haven't seen either one since D and I were about nine years old.) My family are hopelessly snapshot-happy. My niece is totally in love with this guy she married, a sweet little blond Marine who's going to be shipped to Iraq in January and who looks to me to be about twelve years old, but that's okay because she only looks about 15. Everyone was there to celebrate that love, to celebrate these two finding each other (on MySpace or something like that; wild, huh?), having the opportunity to build a little life together before January and hopefully stay together as the great team they are right now for a long time after. Everyone was genuinely happy for them, and hopeful, and focused on the right things about this marriage, like how lovely they are together (and I don't mean how lovely they look, but really how lovely they are) and how well they operate together in the world and privately. The toasts made me cry, so beautiful, every one, especially the mother of the groom who had flown on a plane for the first time in her life to be at this wedding, in spite of the fact that their town in Pennsylvania is where one of the planes crashed on 9/11, which is why the groom joined the Marines in the first place. She got up to give her toast, but then just hung on her son and cried. She has a down-to-earth manner and a wonderfully rollicking sense of humor. She is exactly my age. She was transcendently lovely in that moment of her wordless toast.
I discovered that my friend whom I hadn't seen in seven years has absolutely delightful children and a completely wonderful dog, all of which credit her hard, loving work. I also discovered that I really liked wandering around with them because the dog, a Samoyed who is a service dog in training, attracts far more attention than my leg. I was only congratulated for my bravery in leaving the house once while I was in their company. Awesome.
I discovered that I don't really mind answering questions about my leg when cute boys ask them. (sigh) I had this experience down in the harbor where I was by myself looking for things I could paint quickly when this gorgeous young, blond kid, a perfect embodiment of the California surfer aesthetic, with whom twenty years ago I would have flirted or would have wanted to flirt with me, passed by me in a wetsuit with diving gear. Then he doubled back and said, "Excuse me, I hope this isn't too intrusive, but can I ask you about your leg?" So, yeah, since it wasn't my number he asked for or my name or where I was from, I also discovered, again, that I am old and fat and weird looking, which is not the worst thing to know about myself but never my favorite to remember. However, he went on to tell me that a buddy of his in Iraq had had both his legs blown off recently, one above the knee, one below, and he was genuinely concerned for him. He wanted to know how the leg worked, and I explained and demonstrated, and also explained that his buddy would probably be getting something far more sophisticated because the armed forces were paying not crappy private insurance. He wanted to know if his buddy's life was going to be harder than mine, and I said, "I don't know; probably; it's good that he still has one knee, though, because that will make it a lot easier than if he'd lost both." I told him about Tammy Duckworth, in much the same boat yet longing to go back and fight some more with her unit, or at any rate to still be of service. I told him when something like this happens, unless you have some reason not to, you just decide to live, and then you figure out how, and then you do it, you really live. You just do. He seemed comforted and thanked me, and I was grateful that I hadn't been snarky and sarcastic with him the way I am with many people. But he was so respectful. And yes, so cute. (sigh)
I discovered at the Tall Ships Festival that Chinese pirates sometimes carry very nice camera equipment.
And I discovered that having gotten off my ass for days at a time, going up stairs I have already been up and down more than once is not really harder than going down them, even if there are really quite a lot of them, even if it is very hot outside, especially if I have good company, and even if that company is stronger, faster, nimbler and younger than I am. (Click to enlarge.)
(My friend's kids. Aren't they awesome?)
So, look, while it's true that I am not brave, and that for ordinary, moderately healthy people this kind of trip would really not be a big deal at all, it was a very big deal for me. Shoot, look how much I learned!
And what has been the effect? Well, this is where my wheelchair lives now:
That's right: in the closet, ironically my art supply closet. More importantly, not under my butt, not anymore.
And this is where my suspension belt lives:
That's right: in my Hello Kitty backpack, just in case I need it, but not until then.
I'm walking all the time now, even when I'm home. A lot of times I still don't have pants on, because it's just easier getting the leg off when I do want to sit down for a long time if I don't have to deal with pants and shoes and belts and such, but at least I'm not sitting while I travel from room to room. I still have to use my upper body to haul myself out of the bathtub, but when I do it's right into a standing position and then into my leg.
My gait, though still careful and lurchy, gets stronger and freer every day.
Also, I'm eating two or three meals a day like a normal person, instead of six. I find I can in fact sit with my true love while he eats and not eat anything myself and really feel just fine.
In fact, I feel quite good. I haven't felt my blood vessels screaming and cursing in weeks.
Best of all, I'm going back to California in December to visit my friend and her family. Then in May, another friend and I plan to walk at least part of that famous pilgrim road, El Camino de Santiago, slowly like middle-aged ladies, but staying in convents and hostels and eating a lot of paella.
See? Travel really is broadening, in oh so many ways.
Even after a bit of a pruning. (Click to enlarge.)
Wow, loved all the details! And do let me know if you have any spare time while you're in SoCal in December! :)
Posted by: Jana | October 13, 2007 at 01:11 AM
Glad you enjoyed it, Jana! In December I'll be in Ventura County (and without my magic gas pedal will be dependent on others for transpo out of the area). I guess that's sort of Northern Southern California, right?
Posted by: Sara | October 13, 2007 at 05:20 AM
This was a lovely post, Sara. Glad you had such a nice time and that it's inspired you to get moving about and feeling healthier. It's a really positive corner to turn; can't always be done, which is partly why it feels so good.
Posted by: The Goldfish | October 14, 2007 at 11:32 AM
If you ever make it all the way north to Berkeley, well, here we are.
I loved all the detail too, just by the way. That "moving about more" is a corner I've been trying to turn for some time myself; just getting old and feeling psychologically crappy kinda gets in the way.
I'm fascinated by the feeling that you might "fail" your family, friends, et al. I think it's one I have chronically but without quite being able to tease out specifics except that I'm braced for stinging criticism all the time. Have you ever been able to imagine specifics about that?
(Not demanding an answer, of course, and cerrtainly not a public one.)
Posted by: Ron Sullivan | October 14, 2007 at 12:21 PM
I've been meaning to answer these lovely comments all day, but I've been too busy and now my mind is mush. I will try to reply tomorrow morning.
Posted by: Sara | October 14, 2007 at 11:10 PM
Oh, well, my mind is still mush. I don't know why I thought it would ever not be, but I seem to have memories of lucid moments, and I guess that would tend to keep my hopes up.
Anyway, Goldfish, you are absolutely right. It can't always be done. No one is ever guaranteed a good day even in the best of circumstances.
One of my goals is always to live the day I'm in, really live it to the fullest, whatever day it honestly is. Sometimes that does in fact mean sitting in front of the TV with a cat in my lap (when I'm lucky enough to have a cat in my lap) and a bowl of coconut sorbet. But, you know, it won't kill me to at least get up and walk when I have to go to the bathroom. You know, while I still can. And it has recently become clear to me how very quickly it will kill me if I don't!
Ron, my sister lives in Orinda, and I have been invited to visit, so I expect I will be wafting your way at some point, and I will definitely let you know.
As for the failure thing, well, you were raised Catholic, right? And I was raised Jewish. And we could just leave it at that, but for me there is so much more.
Let me just talk about weddings. I don't really have the greatest track record for weddings. I either can't make it at the last minute (e.g., missed carpool connection, dead car, no money to cover alternatives) even when I have assured everyone I will be there, or I laugh at inappropriate moments (and I laugh loud), or I inadvertently insult someone who makes a big scene, or compliment someone who makes a big scene, or I somehow fail to comprehend completely what I'm doing there in the first place and consequently don't live up to whatever expectations have been placed upon me, such as duties I was supposed to be performing that I didn't even know existed.
Oh, and then there was the one of three weddings I've actually managed to show up to as a putative adult, dressed nicely and with a date, but then my date had to pee so he just stood in the driveway of the La Venta Inn, whipped out his stuff, and peed into the bushes. He didn't even go into the bushes for privacy, just stood in the driveway peeing. We had to leave after that. No one asked us to; there was just no way I was going to stay after that.
And that's just weddings. It would take me 20 years to recount all the different scenarios of failing other people which have already been pointed out to me.
It also seems that my ability to hurtfully fail others is directly proportional to the importance of whatever event it is that I'm supposed to attend, or help plan, or perform at, or bring a cake for, or...
And no, I was not raised by forgiving people, and one of them was a diagnosed but untreated bipolar, so I have no expectation when I fail others of anything short of rage and/or hysteria. And I hate that sh*t.
Posted by: Sara | October 15, 2007 at 06:02 PM
Wow. Just Wow. Followed your profile from New England Bloggahs on NaBloPoMo. Looking forward to spending some time in your archives.
Posted by: BipolarLawyerCook | October 15, 2007 at 08:11 PM
Welcome, BLC! Have fun, and help yourself to cookies and muffins (look under the heading "Fuel").
Posted by: Sara | October 15, 2007 at 08:20 PM
I'm now trying to imagine what coconut sorbet must taste like... Mmm...
I'm a great fan of considering the smallest effort to be exercise, so even when I am very immobile, I would never say that I don't get any exercise. I was about to give you some advice here, but I think I may have to do a Goldfish Guide...
Posted by: The Goldfish | October 16, 2007 at 05:16 PM
Goldfish, coconut sorbet is basically coconut milk and sugar, frozen. (Yum.) Haagen Dasz makes a very nice one.
I look forward to the Goldfish Guide. :)
Posted by: Sara | October 16, 2007 at 05:45 PM