Beginning as I mean to go on

Well as usual lately there is way more to write about than time to write it all. We took an epic journey this past Saturday-Monday to Indianapolis for my father-in-law’s memorial service – epic because, when I heard about the timing of the service so soon after my surgery, I felt overwhelmed by the prospect of traveling with Sam and Sarah (my twin adult step-children, who both have disabilities) while still recovering, and asked Don’s two close friends Frank and Scott to come with us to support us and help with the driving. So, we had a caravan there & back, and it was worth the considerable extra logistics and coordination. Also epic because we basically never drive there & back in 3 days, and because it is likely the last time we will go there, at least as a whole family. The service and open house afterwards were very nice and we heard many wonderful and funny stories about Irv, and hung out with family and old friends.

I felt reasonably well during the trip. I wore the compression garment (elastic tube top with Velcro closure) during the car rides, after not wearing it since my stitches and drains came out last Tuesday. I also worked pretty hard to stay on a somewhat regular schedule of alternating acetaminophen and ibuprofen so my pain didn’t get too bad, and took an oxycodone at night the two nights I was there to maximize sleep. I also brought my wedge pillow and a body pillow for sleeping, and a small heart-shaped pillow they gave me at the hospital to protect my chest from the seatbelt.

I still have a fair amount of discomfort and some pain, ranging from weird tingling, to numbness, to chafing, to burning, to occasional stabbing. Among the most disturbing sensations are the times when I feel like someone is pinching my nipples hard – and realize I don’t have any nipples. In general, when the sensations are strong, it is better when I’ve been able to remember to have a mindful approach to them. By that I mean, paying attention to them as sensations, rather than trying to push them away, or tensing up against them, or having a story running in my head about being in pain, or worrying about the pain getting worse. It is easier to notice that they come and go and change.

I had some trepidation about what to wear for the funeral – my first major appearance dressed up in public (well, I’d been to services on Rosh Hashanah, but my congregation is pretty low-key in the dress up and in the gender norms arenas). Would any of my dresses fit? Should I stuff a bra? Between what they sent home from the hospital and my pre-surgery visits, I had accumulated enough “stuffies” for a 6 or 8-breasted goddess; all of these little pillows are considered temporary, as I am expected to make an appointment to be fitted for the real prosthetic breasts in another couple of weeks. I’d been thinking that these first few weeks when I am in too much discomfort to be able to wear any such thing might be crucial in terms of getting used to the new look. I would prefer to adjust (and have those around me adjust) to a flat-chested look, than to feel like I can’t be seen without prosthetics. So, this felt a little like a make-or-break moment; if I could avoid giving in to the temptation to stuff a bra for this event, I might be able to go for the rest of my life without one.

While that was probably overblowing it, that was my prior going into it. I did VERY briefly try stuffing the slightly smaller and more breast-shaped set of poufs that had been given me into the drain-management camisole. They were quite uncomfortable against my still-healing wounds, so I removed them. Then I put on my little black dress and had a private fashion show for my friend David who was visiting from Ohio, and Don’s friend Scott who was visiting from Chicago. The two of them assured me quite convincingly that the dress looked fine without the stuffies, and that it was “all about the accessories.” And then patiently gave me feedback on a large variety of options for sweater/jacket, scarf/hat, socks & shoes, and jewelry. I was quite pleased with the outfit we came up with, and SO glad to have this gentle/manly company to support me in preparing for this debut.

I’m a little embarrassed to admit that this positive, non-sexual but fashion-critical attention from two (heterosexual) men mattered as much as it did – but part of the point here is to be honest about how this disease interacts with the internalized norms of our society. I didn’t plan it this way – David and Scott just happened to be here when it was time for me to pack for the trip, and I was able to find a playful approach to inviting them into the process – but I couldn’t have asked for two more perfect companions. Two days later, in the hotel room, I dressed quickly (out of necessity) and with more confidence than usual, and didn’t give a second thought to my attire during the event, other than to admire it in the mirror when I went to the bathroom. Thanks, guys!

Today I had another “first” – my first time swimming since before the surgery. While not entirely comfortable either physically or emotionally, I got through trying on a couple of swimsuits from my collection to find one that didn’t hurt too much to wear, changing into it and showering afterwards in the locker room, and the swimming itself. I was slow and careful, and it didn’t feel “normal” by any means, but the swimming felt pretty good. I think I could tell a slight difference in buoyancy, but there is still so much stiffness and lack of mobility that it’s hard to tell for sure. Since the locker room wasn’t too crowded and I was at Capitol Lakes (a mature audience) I was able to bring myself to change without hiding in a bathroom stall. And afterwards, the two private shower stalls were taken and I was too cold to wait, so I showered in the open. Again, I figured, it was good to “begin like you mean to go on,” and get used to it if I can. Mostly, I realized, I am afraid of making other people feel uncomfortable/freaked out/grossed out by my disfigurement. I’m not sure anyone noticed – there weren’t many people there. And, this is the Midwest, so even if they did notice, they wouldn’t have said anything!! It does kinda leave you wondering what they’re thinking… but really, I reassured myself, if I’d had a limb amputated, would I be hiding that? Overall, I felt very pleased to be back in the water.