Peace Out To Wobble World

I have this friend with a terrible illness. Hah, that’s the same schtick my friends use. I, too, have a friend with a terrible illness. This friend has a rare autoimmune disease that attacks and destroys her lungs. It is so rare that it is classified by NIH under “rare conditions” and receives no research funding, no giant fund-raising walks, not even a colored ribbon (I wish they hadn’t picked orange for MS but at least we have one.) For the icing on this cake, her disease is called ASS.  I swear. Anti-Syntheses Syndrome. ASS.

In the beginning, at the tender age of 38, she was very close to death.  A team of specialists with no experience in treating ASS fought it back, but it’s been a daily struggle since then to gain a small amount of lung functioning back and to maintain it. She carts around an oxygen tank, a paper face mask, and a body constantly pumped up with prednisone and other only marginally effective medications with major side effects.  She has two children, only slightly older than my own, and a much more tenuous income.  When my partner and I are feeling sorry for ourselves and need what psychologists politely call a “down-ward social comparison,” we remind each other that at least I don’t have ASS. It could be worse.

When Sandra went out to visit her last year, our friend revealed that, to my absolute shock, when she is feeling sorry for herself, she and her partner say to each other “At least you don’t have MS. It could be worse.” I am the down-ward social comparison for my down-ward social comparison!  It’s so absurdly perfect; perfectly absurd. She sends out these long emails describing her struggles, her triumphs, the physical ups and downs, recent medical procedures and problems, terrifying prognoses, her hopes for her children, and the joys of her dog obsessing over the hose.  Her emails go to nearly 100 people. She has the single most impressive support system I have ever seen and her words inspire gratitude and perspective in so many. So I was surprised to hear that she thought it was so “brave” that I was starting a blog.  Brave! It’s not even my real name. For the most part, I write in the 4^th dimension; where nobody knows me or has to make sense of the incongruity between the person I present and the person I am.

A few years back, when I finally started to use a scooter to get around campus, I made up a game to torture my friends.  Okay, it wasn’t really a game, and my intention was not really to torture them. It was merely a situation that I concocted to defend the last vestiges of my shredded dignity and sense of independence while my entire professional world was introduced to Me-On-Wheels.  Me-On-Wheels was terrified, humiliated, ashamed, embarrassed, and ironically, still way too proud to ask for or receive help.  Sandra and I made a reconnaissance mission the weekend before school started to see how I’d fit into the elevator, open the doors, get into and out of my classroom.  Aside from slamming into the back wall of the elevator (twice), getting stuck multiple times (jammed into numerous doorways), having to use a three-point-turn to pull open doors, and leaving long, dark scrapes in the wall paint wherever I tried to pull in gracefully, it went okay. So well, that it wasn’t until I was home and alone that I wept like a baby about how I couldn’t possibly go back there like this.

But a girl’s gotta work. So Monday morning, I enlisted my ever-faithful best friend (and colleague, by some major force of grace in the universe) to accompany me (On-Wheels) to campus. I struggled in the parking lot, the impossible heat of August in Arizona firing off of the pavement like an IED, to put all of the pieces of the Go-Go together. I am not making this up: Me-On-Wheels started with a contraption called, get this, the Pride Go-Go. I pictured myself in white patent leather go-go boots and a giant gay-pride flag whipping through the breeze behind me as I sped around the new world. The world on wheels. 

My friend was patient and understanding while we stood there in approximately 120 degrees for the hour it took for me to put the Go-Go together with wobbly legs, an arm not getting any direction from my brain that was desperately trying to send signals through frayed neurons, and a rapidly melting vest of ice that my friend didn’t even have the luxury of  “wearing” (I believe the vest wears me, rather than the other way around, but that is a story for a different day). She pleaded with me to let her help; again and again she offered assistance in my comically visible need. No, she could not help me. No, I knew how to do this. No, I need to be able to put this together myself.  No, No, No.

Drenched in sweat and resignation, we made it to the elevator. SLAM. That’s me hitting the wall again. “OUCH!” That’s me running over a student’s foot.  ZOOM. That’s me scooting to my office at top speeds of 4 MPH to avoid being seen by anyone else I work with who will have to offer sympathetic looks, polite questions, or even just witness me in my debilitated state. I don’t have to tell you what the walls looked like.  Suffice it to say that the best facilities folks in the world (and I swear we have them) are no match for Me-On-Wheels.

I hid in my office for a few days, only venturing out to use the bathroom while everyone else was in class.   My friends finally had enough of my juvenile self-exile and came to get me to go for coffee with them across campus like we used to do daily (a sojourn I had refused since my wheel-evolution).  Their kindness and love finally broke me down (that, and a desperate need for coffee, which they were no longer willing to deliver when I was sitting in my office, door closed, staring blankly at the computer screen again). This was tough love time. 

I agreed with trepidation, under the conditions that they would let me do everything myself.  I have to learn, I pleaded. So off we go, the three of us, just like old times. Except that I had to go first to push the heavy door open out of the office suite. I pushed, and it pushed back. Pushed again, was rolled backwards again. “Just let me help you,” Friend 1 or Friend 2 suggested. No. I pushed with all my might and the door opened just enough to scoot halfway through and then close before I was safely through the threshold.  The friends watched in horror as the heavy door came to rest, Me-On-Wheels stuck half-way out.  A student on the other side of the office suite rushed to hold the door open so I could complete my glamorous exit.  He scowled at the two women behind me with contempt for their lack of consideration.  We laughed about how they were perceived by on-lookers, and I made them re-affirm their vows of non-assistance.  You want tough love? I’ll match it and raise the stakes.

I’m sure I don’t need to go on about the many specific ways that same scenario played out over and over again, on that trip and many others to follow.  Dropped my wallet? Spilled hot coffee? Didn’t have enough space in my little Go-Go basket for all that I bought? Don’t help me! Not if you care about me. But the strangers who inevitably race to my assistance after witnessing the apparent apathy of whomever my unfortunate companion happens to be? I let them help because I am so embarrassed that anyone should witness me being right there, disabled and in need of help, that I don’t have the pride left to send them away. Pride a-go-gone.

That is the truest the measure love. Don’t help so I can retain an illusion of self-sufficiency. The people who love me are forced to tolerate the judgment of strangers so that I can pretend I don’t need help. I like to think of it as a public service. All these kind strangers can walk away feeling pleased that they helped a disabled woman in distress.  I’m a one-stop-karma-shop.  Friend 1 likes to tell the story describing me as a beetle turned on my back in the middle of campus, legs and arms flailing around, unable to right myself, while she stands nearby and sips coffee.  She’s not far off.  I’m sympathetic, I am. She definitely looks like an asshole, standing there not helping while I visibly struggle.  I am so grateful to her, and to everyone I have put through the same scenario, or similar ones, because of the sheer magnitude of my constant adjustments.

In any case, this is not really an essay about torturing my friends, although I thought it might be appreciated as background information. It’s really an essay about being saved by friends, as much as I might protest. 

Recently, I joined aforementioned Friend 1 (let’s just call her “BF” for simplicity’s sake) and her 7-year old daughter on an all day play extravaganza at another friend’s home. I had my two little maniacs in tow, and a very affable partner, lured by the promise of all-day mimosas, good cigars, and a favorable ratio of 5 adults to 6 children.  BF and her daughter had been going over for all-day Saturday play dates since her recent divorce, and had enticed me with the resort style atmosphere and the hilarity that inevitably ensues when the three of us get together to do anything (BF, myself, and L).  

I didn’t jump immediately on board, because I am tired on Saturdays (make that Saturdays through Fridays) and getting the whole troop out for an extended play date exhausted me with just the thought. But this had potential, and my kids get tired of playing “wrap mommy like a mummy” so I can play dead and just lay there. A home full of new toys and old friends seemed like a good alternative. We made it, 4 hours late, aching and exhausted, but that didn’t distinguish it from any other play date on any other day.  Here’s what distinguished it- I felt safe. 

We had two adults with the kids inside at all times, while various combinations of the remaining adults sat poolside drinking mimosas. I thought the two adult rule was for me, as I could do little more than lay on the couch counting heads. When a head wandered off, I shouted, “Where’s X?” and the second adult would give me a status report. Then a relief parent would appear, and I could hobble outside to play with the adults.

When the kids went into the pool, there were 10 eyes on them, and 8 working legs.  My daughter is the only one who is not a swimmer yet, and the anxiety of watching her, on the top step, floaties attached to both chubby arms while BF stood thigh deep, soaking her own shorts to be near the baby, was too much for me.  Sandra was chasing Rudy in a little car he was actually driving (this house is amazing!) So I hobbled over, fully dressed, and joined BF on the steps. But I stumbled, as always when trying to descend, and fell halfway into the water. “What the hell, I’m already wet” I thought in my mimosa soaked brain. So I just got in to guard the baby.  But BF knows that I am even less stable in water than on land and didn’t go anywhere; despite her wet shorts, a daughter wanting her exclusive attention, and the apparent option of getting out. She understood without me having to say anything at all and stayed with us, keeping us both safe from the unknown.

Later, different adults put my children into and out of swings, on to and off of the trampoline, gave them snacks when they needed them and space when they wanted it.  I could sit on my thrones (a pool chair and the couch, depending on my “job-site” at the time), and feel useful.  L’s husband continually moved my cane to my current location.  The kids were safe and happy. I was safe and happy. It felt entirely novel.

I hadn’t realized how infrequently I had felt safe when I contemplated having to do all the things that other parents do on play dates. It was as if I was normal on that magic afternoon.  Just part of the tribe, keeping a watchful eye on the kids while reveling in the liberties of adulthood.  We ate, we drank, we laughed, and we played.  I’m pretty sure the kids did too. Despite pain, fatigue, uncertainty, and all the things that were not working in my body at the moment, despite my hesitation to go or be anywhere where I might  not have all of the same capabilities as everyone else in the room, despite feeling somehow responsible for not being able to get up or help out; despite every “but,” I had a really fantastic time at just being me again.

My partner could  probably do with a little less “me” for a while, as this narrative has been gathering in my head.  I can finish today because while Sandra is out teaching, BF is here to assist. To let me just be.  Earlier my writing was interrupted when two old friends, from a women’s group I’ve been in for almost 20 years dropped by on their way to dinner. They understood implicitly that I’d be too tired to go out spontaneously with them. But they invited me, stayed to chat for 20 minutes, and then went on their way. Connection. Then my Monday night assistant, BF of course, arrived just as Luci got home and Rudy needed to get ready for bed.  She changed Luci and handed her to me to rock her to sleep, my routine with Sandra so I don’t risk dropping her. She made Rudy popcorn, put on a movie and sent me outside to write.

Me-On-Wheels is tired. But lives in a Santa’s workshop of compassion and love.  Some nights I am just so lucky.

I have a hard time saying thank you when it matters most. This is my shout out to the elves and fairies that make it all work.  Shout out to the Wobble World. It’s your magic karma shop. Thanks.*

*Burn after reading.