Race Report: 2017 Lake Mills Sprint Tri

This was my fourth sprint triathlon, and definitely the hardest yet.

Three things in the last two weeks have jabbed me in the gut, hard, about the way people use social media to enhance their image by deliberately omitting the gritty/real/unattractive bits…..and it got me thinking.  I want to tell the story of this race because it wasn’t all guns and roses, or whatever.

This one was the one I wanted to quit.

I’ve had a week to think about it and I know that everything that was hard about this race, except the warm temperature, was something I created by either not being prepared, or by letting my mind get the better of me.

Anyway….Race morning, 4:30 alarm.  I’m up, confident, moving well.  Dressed and fortified with coffee and breakfast in hand, playlist specially curated by my husband starting up and I drive to pick up a friend.

“Chatty Cathy” shows up and I talk, talk, talk the whole 40 minute drive and forget to eat my breakfast (rookie mistake #1).  We arrive and bike into transition to set up.  It’s a beautiful morning.  I see the amazing elite athletes we know, and avoid them like the plague.  God bless them, but I’m a straight-up bitch and I can’t handle talking to anyone I know about anything right now.  Tell me it’s a great day to race and I will punch you in the throat.  Ask me if I’m ready and your beanbag will never be right again. Talk to me about something banal like what I’m doing later and I’ll scream obscenities.  Note to Mom, twenty-some years late:  Sorry about all the high school cross-country meets.  

I set up transition, and here, I shine.  I have got this down.  I’m pleasant with my neighbors. There’s laughter and confidence-boosting. I offer my opinion about socks or no socks when asked.  I make room for latecomers.  I am the ambassador of tri.

And now we wait.  I try to convince my friend to pee in her sleeveless wet suit on land to see if the pee will run out her leg or her arm holes first.  She declines, then goes off to warm up.  There’s no one I know in my age group, and so I mill about with strangers for 50 minutes, alternately running to warm up and flinching whenever the start count and horn goes off for the waves ahead of me.  This is exactly like HS Cross Country and “puke” describes how I feel to a T.  Someone is controlling a drone to film the event and I want so badly to have the means and the skill to kill it with a bow and arrow and watch it burst into flame and fall into the lake.  I dwell on this far too long and overstretch my hamstrings instead of drinking any water (rookie mistake #2).  I’m failing at calm.

I finally get in my wet suit, and get in the water to warm up and my heart-rate skyrockets.  Calm the f*ck down, Tiefenthaler. I back float for a while and think about staying in the roped-off swim area forever.

My wave.  Thank god for earplugs that dampen the whole experience because it is beyond overwhelming right now.  I’m positioned close to the front on the outside edge and the gun goes off.  Beach start. We run in and it’s a nice quick drop-off so we’re swimming right out the gate.  For three seconds, I’m holding my own, and then it’s chaos.  Now, I believe my age group, women 30-39 are some of the nicest racers out there.  They don’t deliberately kick you and if they do, they take a second to apologize during the swim.  However, this is the biggest group I’ve ever swam with, it is a full-body press, and I suddenly can’t remember how to swim.  I’m doing a sort of head-up beginner crawl my six-year-old knows.  I’m thinking “ice cream scoop hands” and then I take and elbow to the head and breathe in the lake.  I come back up, disoriented.  We’re only halfway to the first buoy and I’m mentally done.  I’m overheating and let water in my suit over and over and think “And that’s how you get swimmer’s itch in your crotch.” I drift along and let most of the group go. It’s not until midway that I actually start swimming again.  I’m not the best at judging distance, but this is at least 20% too long.  Longest ten minutes of my life.  Excepting all those minutes of birthing my children. Maybe.

Transition.  Shake it off.  Thought there was a water station at the transition entrance.  There is.  But no cups–it’s for you to refill your water bottle with?  How? Get on the bike with just half a bottle of water and can’t remember the way out. (Mistakes #3  and 4.)

The bike course is beautiful.  I’ve studied the map, but haven’t ridden the course, even in the car, and immediately, I see this is another mistake, especially since the course doesn’t have any mile markers.  The road is smooth, with giant divots and cracks now and then, but it’s distractingly beautiful out here.  I see herons and sandhill cranes, adorable chicken coops and wide open farm fields. The adrenaline from the swim is fading and I’m running out of steam.  I run out of water by mile 6-ish.  Very big mistake.  I knew there were no aid stations out here and yet, here I am, ten miles to go with a dry mouth and an unsettled mind.  It’s gentle, rolling hills, and excepting the young bucks on $6000 bikes rocketing past me, I’m alone.  I never expected to be alone so much in triathlon.  Just me and my (now, toxic) thoughts for miles and miles.  I give myself a weak pep-talk, which peters out when I have to wipe the dry-mouth cotton off my teeth and think about how I’ve never, not once, washed these year-old cooling arm-sleeves. Ew.

And then my stomach goes volcanically numb.  I don’t know how else to describe it, but it is the final warning flag for me that I’ve gotten too hot.  It usually goes along the path of the initial nerve damage I got from MS:  Right hand goes tingly, then I lose my grip, left foot goes tingly, then numb, right hand starts on fire, right foot goes numb and then this sort of firework display in my right, low stomach.  This time, it went immediately to highest alert.  And I start to cry.  I can’t do this. It’s too fucking hot and I’m so stupidly unprepared.  If I use the drop handles at all, both legs go numb.

For the second time this race, I quit.

And yet—how can I?  There’s no shade.  There’s not even a ditch to lay down and die in (This is exactly what I’m looking for.)  If I stop biking, it will only get worse, all alone in the beating sun on a remote country highway.

I keep biking.

I get it together for a bit.  The numbness spreads.  I cry again.  I come up on a guy with his whole leg taped up who is moving even slower than I am.  I pass him going maybe 6 mph and tell him to catch me.  He does and we leap-frog our way down the course.  I see a course sign that is just an arrow, but looks like a giant one, and even though we’re four or five miles out I interpret this as “one mile left” and kick my own butt into gear for a while.  I am beyond thirsty.  All I know is hot pain.

And there’s still three miles to go.

I cry on the way in to transition, drop my bike against the fence since the rack, and my spot, is full, and sit down and sob.  I pull on my ice vest and, of course, there’s no spare water bottle packed.  What even??

I quit. Again.

Except…how?  Take the timing chip off and give it to…who?  Where? Saying what exactly?  “This sucks and I’m done.”?  Just pack up and go to my car?  I drove someone else here.  And here is one of the very few times in life that being a non-confrontational introvert helps me—I don’t know how to quit, so I can’t quit.

I tie my shoes and get the fuck up and walk out of transition in tears.  I mercifully walk past the finish line and grab a water bottle over the fence. There’s no shame in walking….so I start running.  The numbness fire in my belly has morphed into regular old cramps and I laugh out loud, alone on a trail in the woods because hell if I can’t handle those.  God bless periods.  I walk.  I run.  I know the course from watching last year and I feel more comfortable now that the trees provide some cover.  Herons fish alongside the berm. It’s a gorgeous day. The mosquitoes are hovering so I don’t even think of lying down to die in a ditch.  A runner coming back in has a t-shirt on that says “GET UP” and I nod.  I see my biking pal with all the KT tape and keep him in my sight.  I try some Gatorade-like stuff at the aid station and cough it right back up. All glamour, all the time.  I finally pass the tape-guy and tell him one last time to catch up.   I run the last stretch in tears.

I finish.

I did it.  Despite all the mistakes and all the doubts.  I finished.* I quit again and again. I’m never doing it again.

Well…until next weekend, anyway.

*Here’s the thing.  Despite all that, I still finished three minutes faster than I had figured I could do it, best-case scenario. Perhaps, I’m stronger and more capable than I thought. Perhaps you are too.

I found my uneaten breakfast and two full water bottles in the van.  Training on a hybrid bike forever gives a bit of an advantage when you then race on a much lighter road bike.  The best way to train for swimming with a pack is swimming with a pack. I need a sleeveless or shortie wetsuit to stay cool. Travelling with someone to the race just might keep me from quitting.  A second and third water-bottle cage is a good idea, but actually putting the water in the one I’ve got is better.  Biking the course beforehand, or driving it in a pinch, is a must.  

Through it all, I remembered the advice someone gave me before my first race:  Look up.  Enjoy it.  You GET to do this.  

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First Step

Yesterday marked the beginning of a new chapter for me.  It was the first day I was comfortable talking about my MS.

I hurt my hip doing my own bike-run-bike the beginning of December.  I have big plans of doing a half-marathon for the first time this April 1st, before tri season. (“Before tri season.” Listen to me.) So when the injury persisted after a few weeks rest, I called the UW Running Clinic and amazingly, wondrously, got in to see a Physical Therapist in a matter of two days.  Is this the benefit of being, of thinking like, an athlete?? I’ll take it.

I was expecting to be put on a treadmill and have my gait analyzed, but we’re not there yet.  First we repair and strengthen.  I met a friend in the lobby, a colleague of my PT, and we caught up about our kids and our health and made plans for his wife and I to train together.  It felt like belonging to a special club.  It felt great.

I meet my PT and he’s smart and nice and he asks questions about the injury and my goals and then, “Is there anything else I should know?”  And I don’t even hesitate to tell him I give myself injections three times a week for MS prevention and my hip is one of those injection sites and I’ve got some welts to prove it.  And he nods and asks if I have any mobility concerns related to that and it’s all completely normal.  He didn’t apologize to me for the diagnosis I shared.  I didn’t have to tell him how it started or how long it’s been going on.

He asks after my kids and we laugh about him asking if I pick them up, which I hear as “picking up after” and, of course I do, they’re slobs.  I mean, they’re my children.

One little test is while sitting, slouching and dropping my chin, I straighten one leg out and see where it’s tight on each side.  Except that dropping my chin makes the bottom of my feet go numb….and I have to redo the exercise a lot until I notice any other sensation. (It’s L’hermittes’ Sign, a vestige of the initial nerve damage.)  I explain what I can and can’t feel and he nods.

He gives me some homework (clamshells, hip raises, foam rolling) and I’m to stay away from yoga and running for a bit.  He mentions something horrible known as “dry needling” as a possible recourse if things don’t improve and jokingly I ask if it’ll make me cry.  He hesitates too long and I laugh and tell him, don’t worry, I’ll do my exercises.  I ask slyly if this is a good reason to get a new bike, hmm?? And he laughs and says definitely.  As long as I have it fitted.  Deal.

Later, he left me with my new resistance band while he filled out forms and I did some bicep curls with it until he came back (only because I didn’t have my phone and I don’t remember how to sit still, look pretty.)  Then, I needed to sign off on our plan and I couldn’t do it.  I’d been gripping the resistance band and my hand was hot and crampy and I got three letters out before I had to stop and shake it out.  Try again.  Third time, I manage to ink it out and he asks, “So what’s going on there?”  And I tell him “Oh.  That’s damage.  When my hand gets too hot, I lose my grip.”  And he’s a physical therapist who works is sports rehab so he says “Oh.  So running in the winter is actually probably better?”  Yep.
“How do you do with summer triathlons?”
“Good.  Well, actually, it’s a challenge.  I wear an ice-vest for the run, but that only give me about 20 minutes on a warm day. It’s part of why I only do sprints.”

Nods.  He just nods.  And it’s no big thing.  And he doesn’t congratulate me or tell me I’m doing the best thing for myself or tell me anything about how great I am.  And I liked it.  A lot.  This is me.  This is what I do.   I didn’t flinch or soften anything about my diagnosis or the small parts of it that affect my life.  And it was just fine.

The New Learning Curve

The learning curve when you have a baby is so steep.  All this waiting and puking and months-long migraines and watching That 70s Show.  And then suddenly you’re never alone.  Never.  The missing puzzle piece is here. You hold a baby, wear a baby, eat with the baby on your lap, sleep with the baby on your chest, nurse the baby while buying groceries.  And then, somehow, there’s another baby and you learn to do all the above with the new, tiny one, while holding the hand or the truck or the monkey of the first child’s at the same time.  And now you are certainly, aggressively, never alone.  You go to the bathroom holding the littlest, while the toddler and the cats watch and take turns dropping things in the tub or sink or garbage.

And after a bit of this, it becomes normal.  Neither of them take a bottle.  Absolutely will not.  And you know what, who cares?   You don’t need to go anywhere, be anywhere but here. You are all they need. Neither of them sleep, not alone anyway.  And who can blame them.  Would you want to sleep in a little cage in a big, quiet room, who knows how far away from anyone? I wouldn’t.

When the eldest went to half-day kindergarten, he was ready, and I was not.  My heart and my skin had never felt quite so lonely.  And so the littler one and I filled our time with nonsense until he came home.  I don’t remember how I managed it, but I once went on a field trip with the four-year-old, leaving the two-year-old in someone else’s care, and we both were heart-sick by the time it was over, him asking “When can we go home, mommy?  I miss my Bon-Bon.”  But his missing us diminished as he grew, and mine didn’t. Mine grew each day, each year.  Last year, we made the leap to him in school all day PLUS her in school four half-days.  And this year, they’re both in school full days.  Thirty-six long hours.

And I hate it.  The saving grace is that my son is finally happy at school.  Being a third-grader gives them some choice about who they eat lunch with, where they sit on the bus, what they can check out of the library.  He has a classroom of kids he’s used to, with fewer distractions and noise than previous years.  My daughter loves her teacher, but doesn’t understand why people continue to talk to her or don’t follow the rules all the time.  If they were miserable as they have been in the past, I don’t know what I’d do.

Now, all I have to do is figure out my own plan.

I had a plan.  I was going to tear through the house when they went to school and get rid of all the stuff we don’t use and the too-small clothes, clean all the things I haven’t since I was nesting, in labor with my son eight years ago, fix all the little broken handles and dents and edges.  Empty out the garage.  Take care of the yard and gardens.  Get oil changes and haircuts and make dental appointments.  Train for a half marathon, take swim lessons, go on long bike rides, go back to boot camp regularly.  Meal plan and grocery shop, actually make dinner, and make lunches that didn’t look I raided a gas station on the way to school.

Instead, I have tabs open and emails started on volunteer opportunities at school and a local community food bank.  I can’t seem to pull the trigger to tell people I can help, commit to being anywhere but on this sofa, watching these episodes, lurking on Facebook.  I have time.  I have so much time.  And I have guilt about being a stay-at-home-parent so much so that I volunteer false information to strangers, “Yes.  I’m home with my kids.  BUT I’m going back to work soon.”  Lies.

I let myself be pushed out of the microbiology lab with a sour taste in my mouth from HR and the misogynistic senior scientists.  I was happy to leave.  I got that license to teach science and I liked it when I was there, but then I had kids and the idea of spending my best hours and energy on kids who didn’t care while sending mine somewhere else was ridiculous.

I WANT to be here.  I am lucky enough to be where I want to be.

I’ve been making mistakes, though.  I spend my energy in stupid ways and so the goal, and my ability to be here and engaged with my kiddos when they get off the bus is still sub par.  I’ll get it right.  Eventually.

Do you know what this is like?  I have to open my own doors, people.  There are no small children running, arguing, crying even about who gets to push the button to open the door.  I don’t have to buckle any seat belts.  Or wait for anyone to “do it mineself,” or listen to how unfair it is that someone has a booster seat and it isn’t them.  Do you know how fast I can run an errand now?   Are you not amazed that I can go to the grocery store AND the pet store AND even get gas and no one needs to be bribed or nagged or towed along?

~~~~

Alright, so this is a ramble and I don’t know how to clean it up.  EXCEPT, that I went to see a friend yesterday.  She’s becoming a Life Coach and wondered if any of her friends would be practice clients.  Yes.  She warns me it’s not therapy, that she won’t give advice.  Still sounds good.  And within minutes of talking to her and answering her pointed questions, I’ve figured it out.  I’m nearly choked on tears and words I can not say out loud.

I miss them so much it hurts.  I am scared of not being here for them.  I am afraid of anything that might keep me from them, be it an outside commitment, a lack of energy or… an MS relapse.

I want to find my way back to me, to find something fulfilling *outside* raising my kids….and the reason I won’t commit to anything is fear.  I’m so afraid I wouldn’t have the energy left afterwards for the things that matter.  And, I’m terrified of relapsing and suddenly being unable to complete what I’ve committed to, of even having telling anyone about my MS and admitting even temporary inability.

I don’t know how to move through that yet.

But I’ve got 30-some hours a week to learn how.

Race Report: Door County Triathlon

I’m sure I haven’t mentioned that I did a triathlon this summer, or again this Labor Day weekend.  I kept it pretty quiet.  You know me, so quiet.  So humble.  I was uncharacteristically out of words afterwards…but I’ve finally found them.  Here’s my first race report:

Door County Sprint Tri, July 16th or therabouts, 2016

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First, the swim. I was ready far too early. I paced and did some swim sprints to get my heart rate up. I peed in my wet suit a dozen times (while in the water, of course) before my wave went off, third to last. I wade out with the pack when the buzzer goes.  I dove in and start free-style.  I was a pro.  I put my face in the water.  I had conquered the totally rational, everyone-has-it-even-if-they-lie-fear of sea monsters.  I was sailing along. Five strokes, ten.  But there were all these other people in the water.  Polite ones, sure (thanks, ladies!!), but also people in kayaks telling you stuff and a boat and someone with a megaphone, I think, and it was too much.  It was all pulling at my attention and I just couldn’t stop looking around. None of these conditions are trustworthy! All these moving pieces! So I did the side-stroke for a quarter mile to keep my head up and in the game.  No biggie.  I can do a front crawl at the same pace I can side-stroke.  (I’m doing a Masters class now—and it turns out side-stroke is not an actual thing.  When she says 100 yds, free choice, she doesn’t mean side-stroke.  Wut?)

I fall a bit behind my wave and it gets nicer out in the water.  I am a seal.  I am a sylph of the water.  I am a selkie.  God, this is such a long quarter mile.

I schlepp onto shore and someone calls my name and I flash a million-watt smile. I have been advised to find the camera, let it be my friend. Lo! The very woman who suggested this tri thing seven months ago is the wet-suit peeler right in front of me!  She yells “Oh!  I get this one!!” and she and her dad unzip me and rip that suit off and get me back on my feet in nanoseconds and I’m rubber-legging it up the ramp to my bike.

I don’t remember transition.  I’m already out on my bike, and it is quiet out here on the road.  And the bay is to my right and there’s hardly anyone else on the road and it is amazing.  I laugh out loud and startle myself.  What a charmed life, to have this body, this time, this ability to move, this gorgeous earth to speed across.  Then my left arm goes densely, leadenly, numb.  And my toes start to go pins-and-needles and I start to wonder what I’m going to do next.  It has only been five miles.  I put my head down. I pick up the pace.  I fly into the water station at the turn-around at mile nine and ask everyone for ice. Ice.  Ice! They are confused.  I wheel my way into their supply line and grab ice out of the buckets, cooling bottles of Gatorade, and shove it down my shorts and into my left arm sleeve. The volunteers just goggle at me.  I want to tell them to volunteer at an Ironman after 9 pm and they’ll see it all, then.

Coming back in, I am now completely alone.  There are no more waves coming out and me and my trusty 1995 hybrid are streaming through the countryside.  Med-tent stop.  Beg for more ice.  More stunned and confused volunteers.  Someone gives me a glove with ice tied inside, which I shove, again into my shorts.  Someone else picks up on the urgency and helps me stuff ice into the elbows of my cooling sleeves.

Mile 15.  Three to go.  There is no one to yell “Hybrids for the WIN!!” or, “Go get ’em tiger!” at.  There is no one panting “Good job.  You got this,” as they pass me either.  Just me and the road.  And despair. We soldier through, together.

18 miles, done.  Transition is going fine.  I have this small chest of ice holding my ice vest in it.  I have nailed down the motions of one, two, three, dumping the ice water over my head, zipping up my vest, putting on my shoes…and I can’t tie my shoes.  My fingers will not work.  I look for anyone to help and then can’t remember if officials can help or just other participants or anyone or WTF will I do if I can’t tie my shoes??  And I grab two fistfuls of ice from the pavement and hold them for a minute, and I can finally feel my fingers and tie up clumsily and boom, I’m ready to run.

Good lord.  My body doesn’t work.  I did my due diligence, people.  I did brick workouts.  I know this sensation in my legs is temporary.  But this is ridiculous.  My toes have cramped into tight, little snails.  My left leg is going numb.  My hands are on fire.  I am tired and so freaking pumped.  This jolt hits me–this dichotomy of “Oh boy” and “Yass!” is why there are addicts in this sport.  You are doing this to yourself…and it’s miserable and exhilarating all at once.  I stumble past the big crowds.  I don’t see my family, but I do see a sign for me.  For me??  On this road?  And it’s an inside joke from sixth grade.  SIXTH GRADE!?!  Did you ever once think when you were in sixth grade that 26 years later you would do a triathlon with someone in your classroom??  I didn’t.  I loved it.  I cried and kept running.

The road gets so, so hot.  I finally see people ahead.  I have found my way back to the race.  People are walking, drooping, shuffling.  I shuffle right along with them.  I walk some. I pass a woman with a “Baby On Board” t-shirt and tell her “Hell.  I couldn’t even walk to my mailbox when I was pregnant.” (Partial lie.  I could have.  I just would have vomited if I did.) I thought I would run the whole thing, but nah, son.  Not today.  I can’t uncurl my toes.  I run until I’m just about to vomit, then I walk a minute and try again.  I get the shakes.  I’m so, so hot.  My ice vest has thawed.  I’m dumping water on my feet and head and in my bra at every station.  No weird looks here.  Everyone is wilting.  I’ve set my eye on Sparkle Skirt, who is part of a Team Triumph, a superhero up ahead.  If Sparkle Skirt can push a whole ‘nother person through this, I can push my own damn self.  I yell thanks to those Angels for pushing and for pulling me along, too.  It’s a 5K.  And it feels endless.

I finish.  I don’t see my family.  I fumble and panic with getting my ice vest off, then fall into the ice pool with my finisher medal.

I did it.  It was hard.  My first thought was “Aaaand, never doing that again.”  Only to immediately remember I was already signed up for one in six weeks.

I’m a triathlete.

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Golden God

A few days ago I read about a man, Klaus Obermeyer, who is 95 and still skiing and generally being awesome.  He swims about a mile every day and says it helps him stretch out and stay young.  And I thought “Yeah!  Swimming!   could do that!” -Me, January 2, 2016

***Turns out the link above will get you to the Wall Street Journal article about Klaus Obermeyer, but you have to subscribe to read it all!  Booo! Sorry.***

You guys! I did it! It took 10 1/2 months…but I swam a mile today! 1800 yards, almost all freestyle.  That’s 1.02 miles!

When I first started swimming last January, I would just get in and go for as long as I could.  No breaks, just full speed.  I would make it about 7 minutes.

When I was training for those sprint triathlons, I had this plan to do 1000 yards, in 400 yd sets.  Or 1600 yards.  And I never did that. Never. I would swim 400 yards and I was done. I would go home and do nothing for two days afterwards.

When I went to my first Masters Swim class, I was exhausted and shaking by 30 minutes and I never went back.

When it came time to swim in my first triathlon in July, I was ready, to a point.  I could comfortably do 400 meters, even had done about 600 m in open water. Aaaand I did five breaths of freestyle and the entire rest of the quarter-mile in side-stroke.

When it came time for my second tri in September, I overheated within 20 seconds (probably shouldn’t have had my wet suit on) couldn’t get my breathing under control, and side-stroked that one too.

And now, four weeks in to twice-weekly swim classes, I finally did it.  I have a stroke that resembles actual swimming more than dragging a canoe through the water.  I do an actual warm-up and cool-down in the water.  I swim further each day.

And TODAY I SWAM A MILE!

Two weeks ago, I swam 1550 yards.  I also ran 7 miles the next day, both of which were the furthest distances I’d ever covered.  And then I watched two seasons of Shameless and ate everything, and slept a lot.  I made two false starts getting back in the pool. I missed two weeks of running and dropped out of a half-marathon I won’t be ready for. There’s a small part of me that worries that this is MS, this fatigue I can’t shake.  Fortunately, I have surrounded myself with logical, calm people.  I tell them my worries, and they say, “Uh, didn’t you just do more than you’ve ever done in two different sports, and then travel to a hot place, get dehydrated, get your period, and, uh, get woken up ten times in the night every night for years? Maybe there’s a reason you’re tired?”

I haven’t mastered the slow build-up in training.  I’m either a golden god or a sofa stain.

Today, though, Golden God!

The Conversation

We spent a bit more than a week far from reality, driving through Yellowstone and camping in The Badlands.  Utter heaven.  I promise to put up a dozen galleries and fill you with longing to drive away from your own lives into the wilderness.

Two and a half years ago, I cried when we drove back into town from vacation, because this is where I have MS.  I didn’t cry this time.

Earlier this summer I had set today as the day I would start taking meds as part of my trifecta of disease-progression prevention; Combine exercise, vegetables, and Copaxone. Mix.  Repeat.  Logistically, though, it didn’t work out.  Did you know the price tag for Copaxone, before insurance, is $60,000 a year?  And with insurance it’s $2,400?  Now, I didn’t even ask, but my doctor already has me being evaluated for payment assistance..which might bring the cost down to an amazing $0 a year.  But, really, how would a person pay for that?  How?

The cogs in the insurance water-wheel are working, anyway.  And now I wait to hear from a nurse, who will come to me and teach me how to do the injections.  I also am apparently expecting a phone call from someone else who has/does use the stuff already.  They try to match you up with someone of similar interests and backgrounds.  Do I really want to talk to someone else with a five-year-old and an eight-year-old, who hobby gardens until she gets lazy, binge-watches Penny Dreadful, and, well, what are my interests anyway??  No.  Nope.  Not really.

True story:  I changed into twice-worn pants from the back of the van from the road-trip debris, in my driveway, rather than wade through the bedroom to paw through my  mostly-empty dresser this morning.  Multiply that scenario times one hundred and you might understand the state of the house.

And now some nurse is going to come here.  Here.  For the love of Pete, I’m going to have to learn how to use an autoinjector in my driveway because there is no way a person can actually walk into the house right now for the Playmobil avalanche.

I hung up after listening to the obligatory facts and possible side-effects portion of the phone call.  Shook it off and went out to tell the kids their horrible fate:  The house must be cleaned.  Now.  Well, starting now anyway.  I expect this to take days.

And here’s The Conversation I had with my daughter:

“We need to clean up.”

“Why?”

“Because there is no safe way to walk in the front door and someone we don’t know is coming.” (This is an important point, because she knows we don’t clean up for real friends.  Just strangers.  And grandma, because she taught us better.)

“Who?”

“Uh. Um. … A nurse.”

“Why?”

“To teach me how to use a medicine.”

“Why?”

“Oh.  Uh.  Hmm.  Well, you know how you get a flu shot so that you don’t actually get the flu?  This is like that.  I need to take something to keep me healthy. And I need to learn how to take it…..so, um, we need to clean up.”

“NOW?!?  Can I do chores instead? Of picking up? Please?”

“No.”

And there you have it–how to talk to your kids about MS.

 

Countdown

The entire house smells like pee.  Cat pee from Stuart’s protest pee on the vent by the front door.  The bathroom from some errant slipstream from a child.  The bedrooms from twice nightly accidents from the little girl with a cold and double swimmer’s ear sleeping like the dead.  The kitchen where all the pee blankets, all the blankets in the house in fact, are waiting their turn in the washer.  Pee.  And my workout clothes too, because I haven’t been able to wash anything other than blankets and have been grabbing biking jerseys that not only are sweaty and damp, have been stewing with pee pajamas for two days.  Pee.  All the time.  Everywhere.
There’s a dried yogurt smear on the floor.  The paper towels are on the floor too.  So are all the grocery bags we’ve ever gotten.  And all the Playmobil ever made.  All of it.  On the floor.  Because the all the art work from the school year sits on the cabinets and the Sculpey we haven’t baked is spread all over the bay window and the candle scaping gems and junk mail are all over the telephone table and the shipping boxes are on the sofas with the towels that were once clean but are now coated in cat fur.  And the Play-Doh and pirate art and the compost bowls and dirty dishes and the library books and the broken picture frames from that time someone slammed their door and they shattered in the hallway.  And the running shoes and rain boots and dirty socks and Candy Land cards and all the stuffed animals with the doctors kit and the bow and arrows and the dying house plants and the cupcake tin filled with rocks and beads and the play dollars and coins and the broken crayons and the spilled bag of bug sprays and sunscreens and the discarded clothes and the catnip mice and the Fourth of July footrace prizes and the dinosaurs and the unopened bottles of Nature’s Miracle waiting to be used on the pee smell.
I get to have a conversation next week Wednesday about which medicine I’ll start with the intention of slowing down the progression of the MS.  I’ll start them when we come home from a westward road trip.
Did I forget to tell you?  I finally got my MRI results back. One new silent lesion. This is six weeks ago:

Sunday, June 5

Watch friends do the Lake Mills Triathlon.  Cry twice.  Once when a runner with spasticity troubles runs by.  Is it MS?  Is it ALS? Parkinson’s?  I don’t know.  But he trucks on past and I cry.  The next when a friend runs by smiling when I tell her she looks like a million bucks and says “This is so, so hard.”  Is it weird to be emoting this much on a trail, clapping and cheering for strangers?  Who can say.

Tell my dad and mom the radiologist found something on my MRI, a silent lesion near the cerebellum, one so small the neurologist can’t see it. That for me, it feels like three strikes and I’ll go on medication, probably thrice-weekly injections, come August to help slow the progression.  My dad asks if the lesions ever get smaller.  “Actually, the first lesion has shrunk.”  I say.

Dad: “Whoa!  That’s just like The Shrinking of Treehorn!”

And I laugh.  Hard.  Like I haven’t in many days.  And all is right with the world again.

I’ve wrapped my head around the injections.  But I’m starting to crack under the very idea of having to discuss them.  I refreshed my memory about the side effects of the options.  Almost all of them include the most common being depression and liver failure.

Did you know that “Depression is frightfully common in multiple sclerosis, so much so that about half of those with the disease will have at least one major episode. Worse, this depression is not the simple result of being bummed about having MS or coping with increasing disability.”  (Read more here.Do be forewarned, though. Reading stats about depression, is, well, depressing.)

This terrifies me.  I know depression.  I remember.  I live in its shadow to this day.  What arose in the darkest chapter of my life took years to squash back down and I’m reminded often of how shallow it lies beneath.  I have a security blanket in the form of a pill I take every day and don’t you dare even look funny at my blankie.  Without it, I don’t know who I am.

What worries me the most about this diagnosis and about treating it is how it will change the way I get to interact with my kids.  I have made choice after choice to be here, now, with them.  What happens now?  What happens if I’m too tired, to depressed, to preoccupied with myself?  It seems that depression lurks in the malady and the treatment. What is my future and if it includes suffering, who suffers the most?

So, I contemplate the future, and retreat as I do.  The house reverts to its natural, disgusting, state.  I run and bike in gorgeous places and exercise until I can’t any longer.  I binge-watch compelling shows (thanks for the heartbreak, Penny Dreadful.) I sleep until someone pees in my bed to wake me.  I plan vacations and write down training plans.  I go to movies alone and clap and gasp.  I sit in coffee shops and write.  I say nothing for days then keep my husband up late and spill it all.  And then I get up and I’m better.  I watch Mindy outtakes and answer my daughter with a proud “yes!” when she asks if girls can be president.  I think about seeing Yellowstone for the first time, and about camping with my kids in the Badlands and seeing the Perseids for the first time.

I think about how far I’ve come and how lucky I am.