Does Trick or Treating Lead to Devil Worship? (a case study of me)

My son loves to hear stories about his parents childhood. I grew up somewhat less conventionally than my husband, because I went to christian school, and was largely sheltered from the life most of my peers experienced. My social life was pretty exclusive to school and youth group. I knew very few kids that weren’t similar to me in faith, ethnicity and so on. My life was full of restrictions. My parents closely monitored behavior, diet, wardrobe etc. My mom has always tried to dress me as if I’m the pastor’s wife on Little House on the Prairie. To this day she loves to buy me puritanical nightgowns as a gift. I relish modeling them for my husband. I give him a come hither look while being swallowed by a Victorian neckline and yards of linen and lace. He usually takes one look at me and says “Your mom clearly doesn’t want us to have sex” and walks away. 

These restrictions were also applied to our holidays. Christianity or the perception of it was in the driver’s seat. But it wasn’t always that way. When they got married, my parents loosely identified as Christian or even agnostic in my dad’s case.  I was a couple years old before my parents would consider themselves born again. The shift on how this new embrace of faith would affect my childhood happened gradually. From my viewpoint as their child, it represented a slow erosion of freedom and fun. 

I went to public school and was allowed to trick or treat up through second grade. During that time I counted myself one of the normal kids in the neighborhood. As a normal kid I had the right to pity/judge the family of 7 down the block who went to christian school and weren’t allowed to trick or treat. I had the benefit of being saved by faith, but we weren’t social pariahs like those other kids. Yet.

Sometime during the summer between second and third grade we became “that family”. I remember being at the breakfast table and hearing my older brother cry and yell. I thought he was hurt, but it turned out my mom had just told him we’d gotten into christian school. I guess I’d been vaguely aware we were on a waiting list, but hadn’t cared that much. At the time I wasn’t concerned. My mom let me know the third and fourth grade classes were so big that year that they added a third and fourth grade combination class,  and I would be in that class. My only thought was of one room school houses I’d read about, and I was certain I’d be happy there.  

I started having second thoughts when we learned they did not celebrate Halloween at my new school. Instead we were allowed to dress up as Pilgrims and Native Americans the week of Thanksgiving and have a special music program for parents. This was starting to seem pretty crappy. I should have seen it coming. The year I was in second grade my parents threw us for a loop when they suddenly decided they’d let us trick or treat under the condition that we say “happy Halloween” instead of “trick or treat”. I remember asking “why?” and being unsatisfied with the answer I received. It was something about Halloween having a history in the occult and devil worship… I’ve always been skeptical and didn’t see what that had to do with today’s rituals.  Halloween night I stood my ground and said “trick or treat”. My brother said “happy Halloween” and kept whispering to me to get with the program or they’d take trick or treating away forever. I did not believe him. Our parents were strict, but they weren’t insane.  

As the next Halloween approached, I could tell my parents were building up to a disappointing announcement. They didn’t engage on requests to shop for costumes and would say things like “aren’t you getting too old to trick or treat.” To which we would respond “no way”. Everyone knows you are not too old to trick or treat until seventh grade and we had some solid years in front of us. Eventually they broke it to us that this year we would go to the “hallelujah party” at church instead of trick or treating. They insisted there would be costumes and candy at this party. We really weren’t given an option about it so I tried to keep an open mind. 

We did not get a lot of candy growing up. My mom would buy us carob from the health food store instead of chocolate. Albeit, we were forever finding empty peanut m&m wrappers in her purse. ADHD was not a diagnosis when we were growing up. They used the term hyperactivity, and my mom was convinced my brother had it. She was also convinced she could treat him by not allowing him (or me by default) to have artificial flavoring or colorings. One Halloween she actually went around to all our neighbors and gave them packs of peanuts and raisins to give to us. It didn’t take my brother long to figure out the treachery. He insisted on doing extra blocks and going to strangers houses to make up for it. My brother found all kinds of ways to get candy. He always had money and even when we were in preschool he would take me to the ice cream truck when it got out of site from our house. He’d buy something for him and a bomb-pop for me. My silence was for sale and it was cheap. Halloween was a respite from our sugar deprived lives, and this swing to religious based celebrations was only going to be tolerated if candy was involved. Sadly, I don’t remember any candy at these church parties. 

The greater issue for me was the costumes. I loved to dress up. I still do. It’s fun to be and look like something else. I was super girly and wanted to be any variety of ballerina-princess out there. Needless to say it was a giant disappointment to learn that costumes had to be based on Bible characters. My mom quickly convinced me to be Mary the first year we went. I ended up being one of a hundred girls wearing bed sheets and carrying a baby doll. The following year I was in fourth grade and desperate to be an individual. The Bible is loaded with hookers, and my parents vetoed anyone who would fall under that umbrella. My mom tried to convince me to be Lot’s wife who turned into a pillar of salt. I didn’t want to be a pillar of salt. I wanted to do the dance of the seven veils. 

I settled on a character that I still believe is the coolest person in the Bible (sorry Jesus). I decided I would be Jael. Jael was a heroine in the book of Judges. In her story, the military leader of an army attacking Israel came to her tent to hide. She brought him in, made him a drink, and gave him a place to rest. Once he fell asleep she drove a tent stake through his skull. I could be Jael. She wasn’t a hooker, she was completely badass, and no one else would be her. I think I almost had my dads permission, but was ultimately shut down secondary to the violence level. Out of desperation and spite I decided to be Noah’s ark. As in the actual boat. I made a poorly designed cardboard Noah’s ark that hung over my shoulders like a clapboard sign. It was huge and miserable. Every time I turned around I’d knock at least three kids over. That was the last time I can remember dressing up as a child. 

I don’t think we went to the Hallelujah party after the second year. It was too awful, and we decided it would be better to at least hand out candy at home. My mom, by this time, had fully embraced the notion that Halloween was the devils work and she was single-handedly going to take it back for Jesus (sorry Jesus). She bought little evangelical brochures on how to give your life to Christ and made us hand them out with the candy. She had cute cartoon one’s for the little kids, and hell-fire and brimstone one’s for the older kids. We would vet them at the door to decide if they got “love of Christ” or “damnation” with their Snickers. My brother and I did everything we could to beat my parents to the door. We’d chuck candy at the neighbor kids and scream at them to “run”, before my mom embarrassed us by evangelizing their Halloween buckets. 

My mom found a way around our interference through the Jack o Lanterns. We had a long cement staircase leading to our front door. There was plenty of room to carve scripture into the pumpkins lining our stairs. One year she carved the full text of John 3:16 into about 15 Jack o Lanterns. There was a single pumpkin with the word “whosoever” carved in it. The problem was people didn’t know if they were supposed to start reading at the bottom of the staircase or the top. No one understood it. I don’t think anyone was saved, but we did wake up to our shredded evangelical brochures and pentagrams drawn in chalk all over the driveway. 

Then there was the year my brother revolted by turning his room into a haunted house. He made Kleenex ghosts and had fake spiders and spiderwebs everywhere. The crowning piece was a rubber snake he tied on a string and hung from the ceiling just over his pillow. The day after Halloween we woke to a horrible smell in the house, and my brothers decorations were all taken down. I asked my parents what happened. My mom said she was going to bed and looked in on her son sleeping soundly with a snake slowly spinning over his head, and couldn’t take it. She took down all the ghosts and spiders and finally the snake. 

“Where’s my snake?” my brother asked.  

My dad sighed and lowered his newspaper. “Your snake is now that horrible smell.” 

“You burned my snake in the fireplace?” 

“Yes, your mother burned your snake” my father replied. “We are lucky we didn’t die from toxic fumes last night, but at least we are safe from the devil”. He raised the newspaper. 

My mother didn’t say anything but maintained a look of sheepish pride. 

My brother and I avoided Halloween after this. We lost the battle to make it any fun, and were simply bidding our time until we could celebrate as adults. From the time I was 19 to the time I got pregnant at age 36. I dressed up every Halloween usually as something slutty. It could be a nursery rhyme character or an action hero, but you can bet it was slutty. My brother and I would start planning our new costumes on November 1st for the following year. We loved Halloween. I once told my dad it was their fault, and that they should have let us trick or treat and get it out of our systems. He agreed. My mom stands firm that she did the right thing. I think she turns the light off and pretends she’s not home on Halloween these days. She’s given up on the mission field of trick or treaters. 

My brother and I have our own sons now, and they pick their costumes and trick or treat every year. I don’t really dress up, because Halloween is more about the little ones, and I thoroughly enjoy watching my son. Last year he considered not trick or treating because he would have to skip swim practice. I shut that down fast. I told him, “You are 8 years old. This is one night of the year. You can swim anytime!” Besides mommy isn’t halfway done living vicariously through you. I do look forward to a day when he is a little older and doing his own thing. On that day, his dad and I can go to a grown up party or a bar. We’ll be the creepy senior citizens dressed like fools, and have to Uber home. BUT we wont be worshiping the devil.

My lack of church attendance and constant criticism of the christian church may lead people to think I’m a prolific backslider. I’m not. I consider myself a woman of deep faith. I am unwavering in my commitment to the Father, Son and Holy Ghost. Life has altered my faith and how I manifest it. However, it’s not a faith that can be lessened by silly things like Halloween and trick or treats, because that’s not real faith in the first place.

Space Aliens and Your Pelvic Floor

This is a follow up to Not Smelling Like R. Kelly’s Sheets. So if you haven’t read it, go back into my archives and enjoy, or be horrified. The choice is yours. 

In April I started physical therapy for my pelvic floor. I made my appointment. The receptionist asked for my email to send me a “packet” that I would need to read and complete before I arrived. It was 16 pages. It included a detailed bladder function diary, and details about what to expect. There were multiple references to vaginal and/or rectal sensors (AKA alien rectal probes) for biofeedback and electrical stimulation. I decided I should stop reading or I’d cancel the appointment. I figured this would be invasive, but had not considered the potential for probes of any kind.

I tried to keep an open mind. I’ve had a baby and all sorts of modesty and respectability go out the window in that experience. I’m not particularly shy anyway. It would be fine. Clinical and fine. My physical therapist was bubbly and chatty and very passionate about the pelvic floor. She had just returned from a conference on the subject and loved to educate her clients. She also informed me she tried not to use probes (not an alien in disguise). Thank the sweet baby Jesus.

She took a brief history of my life and lifestyle. Focusing on the late in life baby, 18 months of breastfeeding, my activity level, and being a homecare nurse for most of my career. Then she looked at me sternly and said, “You have to stop power peeing”. I’d never heard the term, but I knew exactly what it meant and I had no idea how to stop. It’s the way I pee. Is there another way to pee? Apparently there is. You’re not supposed to use your muscles to shove the urine out of your body as fast as possible. You’re actually supposed to sit there, relax and let gravity do its trick. Who knew?

In a nutshell, I have a chronically overworked pelvic floor. She likened it to lifting a fork to my mouth with the same effort I’d use to curl a 25 lbs weight. Tension to task. It makes sense. My pelvic floor is locked up. I need to relax my vagina.

She would apply tension to my pelvic floor muscles (use your imagination) and I was supposed to relax them and then tense them for five seconds. I couldn’t do either without a lot of focus and coaching. When I tried to contract the muscle I could only hold it for 2-3 seconds. It’s like I have a level of constant tension that makes me already fatigued and unable to increase that tension. My pelvic floor is a hot mess. 

This woman was the most enthusiastic vagina expert I’d ever met. She gave me article after article and recommendation after recommendation for my tissue health and hormone balance. I actually bought a product she recommended called V-magic, and all of the affected parties in my house found it pleasant. She was a wealth of information and seemed to delight in the many ways I was a textbook case of jacked up pelvic muscles. 

  1.  I started ballet when I was three and have been in some type of athletic activity most of my life. She would laugh and say “this is why I like to stay fluffy” and pat her voluminous lower abdomen. “All that muscle tension is bad for you”.
  2. I’m a woman. We are perpetually sucking in our stomachs to impress stupid boys, who quite frankly are plenty excited by an ounce of flesh. I don’t know why we try so hard.
  3. I had a baby and breastfed for 18 months. The hormone swings of pregnancy followed by breast feeding relax some important muscles, and it makes you feel like all your organs are going to fall out through your pelvis. Naturally you lock up a little to decrease that horrible sensation. Apparently I never stopped. 
  4. I had a second pregnancy and had to end it because the baby implanted in my Fallopian tube and not my uterus. This is a sudden death scenario for all parties, unless it’s discovered in time. Our baby didn’t stand a chance, but I would survive if we ended the pregnancy. It was either that or bleed to death, so the choice was pretty obvious. However,  the hormone swings of being pregnant to suddenly not being pregnant did a number on my tendons and ligaments. They loosened for pregnancy and then had to tighten right back up. All of this action threw off my pelvic floor, once again. 
  5. I’m a nurse. To be clear, I’m a homecare nurse. Ask any nurse or teacher and they will tell you they don’t pee. So not only am I in a profession dedicated to bladder retention, I upped my game by working out of my car. I don’t like to pee in patients homes, so I look for gas stations, churches, relatives homes on my route and so on. If I had a patient in Redfeather or by the Wyoming border, forget about it. I can hold my bladder like Hercules and I release it the same way. I’m a power pee-er. All very bad things. 

It’s pretty deflating to find out that you don’t pee right. It makes you wonder what else you think you’ve had figured out since toddlerhood and are completely jacking up. I probably don’t walk right either and am systematically disintegrating my joints every step I take. Evolution at its finest. #weaklink

I think I saw her weekly for 6 weeks. She gave me homework and asked if my husband would be willing to help. I laughed and said he’d be delighted. She said you’d be surprised how many men are uncomfortable helping their wives do these exercises. That baffled me. Who are these men??? My husband is not big on PDA. If you see us in public you’ll think he finds me completely unattractive. Don’t let him fool you, when we are alone he expects to be treated like my personal stripper pole. 

I was doing pretty well for a while, but then summer came and vacations and other distractions. I kind of ignored all I’d learned and drifted back to my locked up pelvic ways. Muscle memory is a bitch. It hit home a few weeks ago at CrossFit when we did something in the warm up and I felt the drip I hadn’t felt in months. “Damn it, I deserve that” was all I could think. I told Garry I needed to get back to my exercises. He was elated. 

Sadly, it was probably a bit too little too late, because within a week I had horrible hamstring and calf pain. This pain eventually worsened from soreness to nerve pain, numbness and tingling from hip to foot. I also developed a limp and felt as if my muscles weren’t firing right.  This is when it sucks to be a nurse. We get the slightest odd sensation, and we will find a terminal illness to go with it. We are amazing players in this mind game of terror. I was pretty sure it was sciatica, but I was also considering a deep vein thrombosis, multiple sclerosis, Lou Gehrig’s disease, and a brain tumor.

Life has taught me that early intervention is key. I went from mild to aggressive treatment in a matter of days. Acupuncture didn’t fix it on Monday. Urgent care’s muscle relaxers and anti-inflammatories didn’t fix it on Tuesday. By Thursday it was clear I was getting worse and not better. So I limped my poor broken ass to the emergency department. The PA who saw me was clear I wasn’t dying. I did have a bulging or slipped disk and needed a higher dose of steroids followed by physical therapy. He said I could swim, but no bending, twisting or lifting more than 30lbs for two months. I took that to mean no CrossFit. 

At this point we were two weeks into the CrossFit open, and surprisingly I was bummed I wouldn’t finish. It’s surprising because I didn’t ever want to be in the damn open. I didn’t sign up for it. So, it was a mystery when I received an email welcoming me into the CrossFit open. The open is the annual ritual of separating the men from the boys, so to speak. It’s composed of a series of 5 particularly grueling workouts over a five week period. You get to log these workouts for the world. They have the prescribed workout and a scaled workout option.  I don’t need the open to show me or the world how I rate, but other athletes think it’s fun, my husband is one of them. He thought it would be even more fun to do it together. He’s romantic like that. I did a great deal of bitching, and even cried while making dinner one night. “You don’t know how much I scale things already! I can’t do the open scaled workouts, I know I can’t.” I knew I’d suck at the open. Sciatica should have been a welcome reprieve, but I really hate not finishing something I started even if I’d make a lousy showing. 

At my first PT appointment the therapist started right in on how strengthening my pelvic floor will be my ticket to recovery and maintaining good spine health. Damn it! The pelvic floor again! She didn’t make any mention of probes, but did give me some hints and exercises to relax and strengthen the muscles (no probes needed). 

Currently, I’m on day four of my steroid burst and I’m feeling a little violent. One more day and I’m off them. I’m trying to mitigate becoming a danger to self and others for the next 48 hours. I’m planning on swimming tomorrow and I’ll bring up the stationary bike next time I see the physical therapist. My limp is lessened, although still present. 

When push comes to shove, I’m shallow-vain-girl. It’s important to me that I age well. I know CrossFit is great for my muscle mass and bone density. It promotes mobility and balance and all the other wonderful things. More importantly, I love the way I look. All the things that weren’t so high and tight are getting higher and tighter. In the next two months I’m terrified my boobs will sag. I was going to put my membership on hold, but in discussions with the manager we agreed to let it ride. I used to work with her at a rehab hospital and I trust her with my spine (and boobs). They have worked with injuries more significant than mine. It is surprisingly possible to scale a workout more than I already do. My one claim to fame might be that I can scale the shit out of any workout. Like.no.other. 

I’m going to get past the acute part of this injury and live a life dedicated to my pelvic floor health. My grandmother lived to age 105, so I really do need to be kinder to my body parts. If you have my genetics and are looking down the barrel of a long life. You should probably do all you can to ensure prolonged quality of life or that long life is going to suck ass. Unless you are one of the fortunate individuals to experience alien abduction complete with rectal probing. I am now convinced that these benevolent space creatures are deeply concerned for our pelvic health and maintenance. If I have learned anything this year its that a functional pelvic floor appears to be central to species survival, or at least mine.

Moving Day

I wrote this a while ago and have sat on it for a lot of reasons. Number 1 the way I cope and the way Garry copes are very different. He wants privacy and I need to share everything. It’s a tricky balance between me feeling muzzled and isolated to him feeling exposed. But also, because I’m not very proud of myself for this one. I’m sad and a little ashamed. However a dear male friend of mine recently told me that he has always loved and respected my vulnerability. He encouraged me to never stop practicing vulnerability. Also, I started this blog for two reasons. It’s cathartic for me, but I also hope to give voice to things other people are experiencing. I had a really hard time finding resources that were relatable when Garry got sick. They all seemed very sterile and PC. Not my style. Life with cancer is a lot uglier than that. I’m uglier than that.

We’ve all experienced a moment when someone’s words force you to look at who you are. It’s as if they made you look in a mirror. Sometimes you like what you see and sometimes you don’t, but I’m getting ahead of myself. Let me back up a little.

Recently, I diagnosed Garry and myself with post cancer stress disorder. Granted it’s not a real diagnosis and diagnosing is outside of my scope of practice.  BUT the fact remains that we both freak out about things that never would have bothered us before. You know about my risk aversion. I am terrified of anyone I love or even myself getting hurt. Garry’s stress is more psychological and insidious, and I haven’t always alleviated it. In many ways I’ve compounded it.

When Garry was diagnosed I remember having the surreal thought of “So, this is what will make me a widow”. Slowly but surely I psychologically moved into what I call “the widows waiting room”. I knew I might be able to leave the widows waiting room by the same door I entered, but I also knew I was likely to have to pass through the other door, the door that leads to widowhood. I became obsessed with widows in my life. I watched them like a stalker. I wanted to know how they stayed strong, what got them through, and more importantly how were their kids coping? I obsessed on them and I made my peace with becoming one of them. What I saw was encouraging. These women were so strong and brave and kept putting one foot in front of the other, for their children if not themselves. It gave me comfort that I could walk that road too, if I had to. But Garry didn’t die. The cancer died. He’s here today with no evidence of disease, and I’m still living in a widow’s waiting room. I’m scared to move out. I’m not sure I know how, and I don’t really remember what life was like outside of this room.

Garry has been well for the better part of the last year, and I have very consciously decided to stay in the widows waiting room. I thought I could stay here and no one would notice, except maybe my closest friends. I know it’s counter intuitive. I know it seems like a place I should run from at the first sign of an opening, but it’s not that simple. Being plucked from my happy normal life and dropped in the widow’s waiting room was more painful than I can explain, but I’ve gotten used to being here. I’ve gotten used to pondering and preparing for all the bad things. I’m afraid to leave, because what if I have to come back? In my mind it made more sense to stay than to face the pain of leaving only to be forced back months or years from now. Staying in this room, in this psychological place, was purely for my protection. It was my way of buffering a potential fall. It is a way to anesthetize my life.

Kate Bowler, author of Everything Happens for a Reason and Other Lies I’ve Loved, writes about the realization that her cancer was the most painful thing that happened to those she loved the most. She goes so far as to say that she is the worst thing that’s ever happened to them. No one thinks that when they look at a sick loved one, but the sick person feels responsible for the pain they cause however out of their control it is. Cancer gives everything an edge. Even love and joy will cut you, because you know they may not last. Loving a person with a life limiting illness hurts, and it probably hurts them even more to love you back. You are potentially saying goodbye to them. They are potentially saying goodbye to everyone, even their children.

It is normal to start grieving someone before they die. It’s called early bereavement. There are counselors who specialize in this. I’d be lying if I said I hadn’t started grieving Garry’s potential death years ago. I probably started grieving him almost as soon as we had a diagnosis. It hurts. It will wreck you. When you suffer from a prolonged pain, physical or mental, you will eventually find ways to numb it. For me it was tasks. I stayed busy. I planned and worked towards making life easier if BD and I were to become a family of two. It numbed the pain. It was progress and motion and it gave me a sense of control. I got used to this life. I found other ways to cope that included distancing myself emotionally from Garry, and it became my normal, semi-comfortable life. I didn’t do it on purpose or plan it, but I did distance myself from him.

I’ve been in countless people’s homes throughout the end stage disease and dying process. It’s really common for people to disengage as they near death. I always assumed it was to help them leave this world. Disengagement was a means of softening the forever goodbye. Without intending to or even realizing it, I was disengaging for my own self-preservation. When Garry got well, I didn’t know how to let those coping mechanisms go. I didn’t want to. I felt like this continued state of being would protect me and keep me safe knowing the potential for the cancer to return. I had this illusion that I could secretly stay in the widow’s waiting room and Garry wouldn’t notice.

A few weeks ago we ran into a friend who is a breast cancer survivor. Like Garry, she is currently doing well and has no evidence of disease.  They started chatting about their current state and treatments or lack thereof. The conversation then shifted to how their marriages have evolved in the face of cancer.  They both acknowledged their awareness that their spouses were preparing for their death, and acknowledged that as painful as it was watching us plan a life without them, we needed to do that.  Then she said that thing. That thing that made me cringe, and feel so small, and ugly, and sad. She said, “Okay, so it looks like I’m going to be here, so you can come back to me now”. Garry didn’t say anything verbally but his body language showed absolute alignment and understanding with her statement. None of this was directed at me. It was a conversation between the two of them, and I was mostly standing to the side. It was, however, a bitch slap I needed and deserved. I know that was not her intention. She is very kind and thoughtful and I have a great deal of respect for her, and I think that is why her words carried weight with me. 

I’ve sat with that for the last two weeks. I’ve tried to justify staying in the widows waiting room, because “what if”. I even wrote his Oncologist and let her know where I am at emotionally. I asked if I’m being pessimistic/crazy. I told her, I’m stuck and I don’t know how to move on. She wrote me back within hours because she’s a brilliant physician and an even better human. She told me I wasn’t pessimistic, and that the cancer could come back, but then she gave me all the reasons to have hope. I can’t really explain how, but she kind of opened the door for me. It was probably a door that only she could open.

For the first time I started asking myself if I’d regret staying in the widow’s waiting room. It wasn’t about safety for me anymore. It was about regret, and I would regret staying here. I would regret it profoundly.  I don’t care if Garry has months or decades left. I don’t want to spend them in here anymore. I want to go home. It’s moving day. I need to pack my shit and go home. All of me, with nothing held back. I can take the hit of bad news down the road. I’m well-conditioned to take that hit, but I may not have to, and time in the widows waiting room with a healthy husband waiting for me is wasted time. I don’t want an anesthetized life. I don’t want a life of regret. I want a life of deep connection with the man I chose, and would choose again.

So That Sucked

Today I discovered that I am completely tapped out when it comes to unnecessary risks. Tapped out. A few months ago my husband signed our son up for a 1000 meter open water swim. It was ambitious and BD wanted to do it. Eventually, we realized it was probably more than a nine year old on his first open water should have to do, so we dropped him to the 250 meter. There were three open water training sessions prior to the actual event and BD was able to make it to one of them. The first one. The only one in a pool. We got him out in a lake once with a friend of ours who was great. It was eye opening and clear to me that dropping to the 250 was wise. Plus our schedule and the pace of our lives would make it impossible for him to adequately train for the 1000. 

Last night I decided to look at the weather for today and realized we’d be throwing our skinny-ass kid in a 70 degree lake, with 58 degree air temperature. This was the beginning of my shit spiral. I started texting my brother and sister in law who were both colegate swimmers and they agreed it was cold and they wouldn’t do it without a wetsuit. By 8:30pm I went on record with my husband that I was not a fan of going ahead with this stupid event. 

It’s important to remember that I’m an old hospice nurse and watching people die for 15 years kind of normalizes death. My mom was a pediatric audiologist who used to treat all children like they couldn’t hear. I, on the other hand, am constantly expecting people to drop dead. Being married to an oncology patient has not helped. My current job involves a lot of data and chart reviews on what can go wrong with kids and babies, so I also have that to fuel my paranoid little fire. 

I’m not in a good place right now for unnecessary risk, but I went to bed completely convinced they’d cancel this shenanigans and we’d have a lovely day without it. They didn’t. As soon as we were up my husband reminded me that BD’s mood tends to mirror mine and I better keep it together. I’m not good at containing how I feel, but I gave it my best shot. I tried to keep it light, but made sure he got the ‘listen to your body and do what is safe” lecture. I told him “if you feel like you can’t make it to the buoy and back don’t try to do it”.

Truth be told I’ve always been a cautious safety girl. Even before kids and cancer I’ve never understood our gladiator culture around extreme races. I was beyond baffled when extreme races came out with electric shock obstacles. There isn’t much that will make me give my husband a hard no, but there was no way in hell I was going to let him spend our hard earned money to overtax his cardiovascular system and simultaneously receive an electric shock. Seriously, what is wrong with us? Are we that bored, or broken, or both? In my mind this is the result of a bored culture of excess that needs to do unnecessary “extreme” things because we are dead inside. Fix your life people. 

So there we were at the reservoir and no one seemed bothered by the potential environmental impact on our skinny children. We are dicks, the whole lot of us. This youth event was happening. God save our souls. I was seething. I got to the point I didn’t want to talk to other parents, and I couldn’t look at my husband. He pushes BD in ways that I never will, and it’s usually so good for him. Additionally, there isn’t much BD wont do to make his dad happy or proud. But this felt like it crossed a line and was a breech of my son’s trust. I mean there is no way either of his parents would have willingly swam in those conditions. Honestly, I blamed myself. I’m the parent who’s judgement isn’t blinded by testosterone. Everytime I hear someone ask “but did you die?” I want to throat punch them. Really, is that the new standard? We are all going down in a blaze of bravado and machismo, and I’m over it. 

He had a great attitude. He was having fun with his friends, and from my vantage point happily got in the water. They all took off and he stayed with the herd until they rounded the buoy. He started to slip behind after that but had a friend close by. I watched him struggle and rest and make all the smart moves. He would call out to his friend and check on her. The safety boaters were keeping a close eye on them and I could hear them verbally check in with him. He was ok, but I was not. 

I could go on and on about how unnecessary this was. There are perfectly good heated pools he can swim in at anytime. This is hardly a necessary life skill. But more than anything I’ve spent three and a half years terrified my husband would die. It’s always with me. Always. Things are so good right now. He is literally without any measurable cancer which is nothing short of a miracle. Cancer is hard on a marriage, but our marriage feels like it’s in a really good place. I’m relieved and happy and trying to figure out how we do life in a cancer free world. But today, I lost my shit. It hit me like a hammer. I can’t be scared for my family. Especially when it’s not necessary. I can’t be scared. Don’t make me be scared anymore. I’m still scared for Garry. That will take a long time to go away, probably decades. I can’t be scared for my kid. 

I am not ok. I am altered. I imagine I will be finding out all the ways I’ve become jacked up in the weeks and months ahead. Good things can be taken away so fast, and I can’t unknow that. I don’t want to give morbidity or mortality an assist. That probably makes me a helicopter mom, but so be it. I’ve got one kid. He’s my best job. He’s my most important job. 

He is fine. He had fun and he wants to do it again. I do not believe that a good outcome means good decisions were made. I will have to weigh that in the future. I will probably have to decide if I do the hard no, or I don’t watch, or I do watch and take xanax. I have lots of options. I want my kid to live his life, but some things aren’t worth it. However, some risks are worth it. I know that, and I don’t want him living in a bubble. I just want to stop living on the knife’s edge of panic and I don’t know how to move forward. For now, I’m going to over react and throw impressive adult fits, and lose my shit, because honestly that’s more fun than being sad and scared. My husband will be so pleased. 

Love Letter

Love and acceptance are not the same thing. We can all think of people we love who have things in their lives that we can’t accept. Transversely we can all think of people who we know love us, but we also know they do not wholly accept us. Both relationships hurt. But what’s worse is when we do that to ourselves. We’ve all wexperienced looking in the mirror and not accepting the person looking back at you. When that’s the case it bleeds into all of your other relationships. These waves of love and acceptance travel with us through our families of origin, our friendships, marriages and relationships with our own children. Some of it is defined by our beliefs, but it can all be altered by life experiences and circumstances.

Today is my twelfth anniversary and I want to take a moment to immortalize my love and acceptance of Garry publically. He will hate this, but public praise is my love language and he needs to accept it. See what I did there.

My Love, 

Fallin in love is so fun. There is nothing like it, and falling in love with you was amazing. I had a feeling it was the last time I’d fall in love, and I was okay with that. You were so kind to me. You were interested in everything I said and did, but more than anything you made me feel safe. I was safe with you, body, soul and mind. You were my shelter. It was the most mutual relationship I had ever had.

The best relationship advice I’d ever received was from the husband of one of my hospice patients. He was a little gruf and called me Peach, because according to him “as far as nurses go, you’re a peach”. He told me, “50/50 relationships are bullshit. You give 100% and find someone who will give you 100% and that’s the only way marriage can work.” It didn’t take me long to figure you out, you’d give us 100%. 

Beyond that you are funny. I’ve always been a sucker for a guy that can make me laugh and tell a good story. The fact that a solid half of your story’s started with “So, I was drunk and naked”, made you irresistible. You are my favorite travel partner, and I love sharing this world with you, especially when we are drunk and naked.

You have a keen sense of fun and adventure tempered with a grounded thoughtfulness and stability. You are my match. You are the earth to my sky, and the ice to my fire. I love discussing politics and religion with you, even if we have different political affiliations and faith backgrounds. We have very different parenting styles but BD needs us both. He thrives when you challenge him, because he knows he can always crash and burn in the softness of mom. We are very good parents and I’m so proud of the work we do with our son. 

We have our failings of course. We can’t move a piece of furniture without arguing. We are often better at dividing and conquering than trying to work on a single project together. You are fiercely protective of your privacy and I don’t believe that too much information is a thing. I also lack the capacity to keep a secret, especially my own. 

We’ve had a lot of loss in our marriage, two dogs, grandparents, my dad, and a baby we never got to hold. You were my rock through two terrifying pregnancies and the joy of our only child. You took care of me in multiple orthopedic surgeries and a demon possessed gallbladder. Being a caregiver is not your favorite thing, but you’ve done a good job. 

Recently you told me, “I’m not the man you married”, and you’re not. You’re better.  You’re refined by fire. You are a polished river rock. Since your cancer we’ve done our best work as a couple, and we’ve done our worst. We’ve come very close to each other and at times very far away. Through it all the love has remained. Love is the easy part.  Accepting ourselves and each other as cancer has molded us and changed us is hard work. Luckily, you’ve never been afraid of hard work. Especially when that hard work is me. 

We are not the same, but I still choose you. You are still my match. You still make me laugh and tell great stories. You remain my rock. We have both been broken and mended over the years. I’m in awe of the battle you’ve fought and continue to fight. I’m in awe of the community you’ve built around you, the friendships you build and maintain. 

I have had to imagine a world without you, and it terrifies me. You are my best friend. You are my safe place. When I chose my husband I did a really good job. You are my best decision. Making a baby with you is the only thing that equals it. I love you. I accept you, all of you. You’re beautiful to me. Never leave me. Never leave me.

Be Like Steve.

I am publishing this with the permission of Steve’s wife, who is a brave badass and forever in my heart as are all the melanoma wives.

Steve was a guy I never met, but he changed my life in immeasurable ways for the better. I want to be like him, but I’m not. I’m entirely too selfish and pessimistic, but I hope to raise my son to be like him. 

When Garry got sick and we were in the early “notification phase” we were sent on a collision course to meet Steve.  The “notification phase” is the part where you have to decide who needs to know you have cancer and how much you tell them, and carry the guilt that you have just given someone you love the worst news of their lives. At some point I recall Garry saying, “I can’t keep doing this. I’m tired of hurting people”. We took care of family first and then chipped away at our friends. 

One of Garry’s early conversations was with his friend Jeff. Jeff is a teacher and a summer raft guide like Garry, and we go on family trips with them every summer. Jeff is also a coach. Two weeks prior to Garry’s call, Jeff had taken a similar notification call from his good friend and fellow coach named Steve. Steve had melanoma, the same melanoma. He also had a wife and a baby and one on the way. Jeff quickly connected Garry and Steve. 

At first they text each other, comparing notes on what they understood about their diagnosis and treatment options. Garry was scheduled for a massive surgical lymph node resection that would likely leave him with debilitating edema. Steve had already been to Anschutz in Aurora and was going to start a clinical trial that did not involve surgery. Garry was all on board for that. He didn’t want to lose his mobility. He had always been an athlete, and that defined who he wanted to be as a father. He wanted to teach Bo how to work an oar frame, and snowboard. He had no intention of being a sidelines dad. He told me almost from day one. “If I have to die I want to die snowboarding and rafting.” Mobility is key to my husbands quality of life, and that has driven most of the decisions we’ve made in regards to his treatment. 

I remember eavesdropping on their first conversation on the phone. It wasn’t hard, because Steve was loud and I could hear him pretty clearly. More than his words I remember his tone and his laugh. This guy was a breath of fresh air. He was the sun shining through the storm clouds. He was full of encouragement and grit. At the time, Garry and I were in a very bad place. My dad had died of a lesser form of melanoma not five years earlier. I was a hospice nurse and knew full well what a death sentence this was. We were grim. We were beyond grim. I couldn’t set us right. I tried to be encouraging and hopeful, but we were still listing hopelessly with no shore in sight. Steve’s conversations were like the hand of God reaching down and setting us back on our feet. I felt like Steve’s voice was the one convincing voice that told us to pull our heads out of our asses and get in the game, because we could still win this. Sometimes when you’re at the end of yourself, you need someone else to set your horizon line. Steve did that. Steve was a coach. He was our cancer coach. 

There is something remarkable about a man who can reach out of his crisis to pull you out of yours. Like I said I want to be like Steve, but I am so far from that. Garry and I joke about our level of compassion fatigue. Sometimes I can barely tolerate hearing about other people’s problems, let alone try and put them back on their feet. Steve paused his own crisis and reached out to us, he knew we were in psychologically worse place than he was, and he knew why. Garry had told him about my dad and my work. Steve said, “this is really in your face then”. He acknowledged that we were there and validated the reasons why, but then found a way to  grab us by the hand and pulled us out. He put us on the right road. He was sunshine. He didn’t have to do that. He was fighting for his own life. It’s a hard place to give from, but he gave. He gave abundantly. I will love him forever. It’s a debt I can’t repay. 

Steve died that July. We didn’t go to the service. I had hip surgery and was non weight bearing on crutches so getting around was hard. Plus, I don’t think we could face it. It was so close to home. I’ve always regretted that though. I would have liked to have been there. I would have liked to give thanks for a life well lived. 

I remember asking Garry if Steve had a wife and kids when they were first connected. He said he didn’t know, and I said I wanted him to find out so we could make them our new best friends. He said, “I don’t think they want to hang out with us. I don’t think they are as depressed as we are. I’m not sure we’d be good for them.”  I realized Garry was right. I don’t think we would have been good for them. 

I found out Steve died because of an article in the newspaper about the death of beloved coach. Garry and Steve had text less and less as they started treatment. I think there was apprehension in wanting to know how the other person was doing. Unless they were both responding well it would be hard. For one of them to be successful while the other was not would be hard. I had never known Steve’s last name, so I wasn’t certain it was him, but I was pretty sure. It was a sucker punch. God, I wanted him to beat it. I wanted family barbecues with the two surviving dads and their families. That was the dream. Then I saw the name of Steve’s wife and I realized I knew her.  We had gone to college together. She played basketball and was very good. She was funny and smart and just a solid cool chick. My heart broke for her, and for her babies. It could so easily have been me and my baby. I was scared to tell Garry about Steve. Garry was responding well to treatment, and I was scared this news would have an adverse effect on that. That night I showed him the article. He held the newspaper and sat down hard on our hearth, one hand going to his temple. It was blow. I could see that. He had believed it would be Steve that would fly through treatment and beat this. He looked at me and said, “That was so fast”. I know this beast, and it’s brutal and fast. Steve’s disease course was very normal. Garry is the outlier. 

I won’t speculate on why Garry is here and Steve is not. That is a dangerous exercise in futility and nothing good will come of it. What I do know is Steve was that guy who saved us. Who set us right. I wish I had known him. I wish I could thank him. I will tell my son about him, and try to remember what he did for us, for me. I will try to be like him. I will fall short, but I will try. 

Love is White

I can’t remember the last time I visited my dad’s grave. I used to go religiously on holidays and his birthday. I would tell him all the news of my life, and the ways BD was growing and changing. I used to feel his presence there, but that faded overtime. At some point I knew he wasn’t there, and my visits declined. Plus, I read a terrifying statistic about women being sexually assaulted while alone in a cemetery. I told myself I’d get over my fear of guns and get one. Then I’d go back to regular cemetery visits while packing heat. I’m still scared of guns and still don’t have one. Additionally, life has been busy, and cemetery visits have been the last thing on my mind. 

Last night I had dinner with an old friend from highschool. I met her my senior year, and first year back in public school since the second grade. I was a senior and she was a sophomore. We took speech class together. On the first day of school we had to answer a bunch of questions as an ice breaker. One of the questions asked what “what color is love?”. She and I were the only ones that answered with the color white. We were friends instantly. To this day she’s one of the people I love, respect and admire most. 

We spent the evening catching up on my marriage, her recent divorce, and how we are surviving everything while trying to navigate the complications of a life we never expected to face. We compared notes on how to make good humans out of our children. She grew up without a dad, and mine died in 2011, so we talked about our moms and their politics. Somehow the conversation wound its way to my dad. She said he was wonderful, and recalled how gentle he was and how rational. He was always the voice of reason. When friends who knew him remind me of who he was it fills me a warmth I can’t explain. It makes my memories real again. I’ve come to doubt a great deal of my memories for a lot of reasons. Confirmation of how I recall him is very comforting. 

We had dinner in Old Town and the cemetery was on my way home. I wasn’t in a rush for once. I love that cemetery. It’s old and has lots of big trees. Often I see deer there. My dad is buried under a twisted pine tree that sheds all over the stone bench marking his grave. I used to bring flowers for him and apples for the deer, but last night I came empty handed. I hoped to see deer, but it was just me the tombstones and the mosquitoes. The evening was warm and the sun was low over the mountains. It was quiet and pretty, but it didn’t take long until the mosquitoes got the best of me. I got in the car and as I drove away a thought hit me. It was light at first, but the weight of it grew until I felt it push the air from my lungs, and the tears from my eyes. When dad died, I lost my softest place to fall. I realized I’ve been free falling for three years. In that moment I desperately wanted my dad to catch me, and I let myself slide into the misery of it all.  I’ve needed to have a good cry for a while. It’s been creeping up on me, and I’ve ignored it. I’ve escaped the tears through the protection of a busy life. Last night it wouldn’t be ignored anymore and I guess that’s okay, I’ve earned it. 

I didn’t know it growing up but my dad understood suffering in a way most of us never will. He was not a perfect man, but he was the perfect father for me. He was exactly the daddy I needed. He was everything I’m not and everything I wish I was. He was a listener more than a speaker, but when he spoke his words were measured and thoughtful and full of wisdom. His words carried a weight mine never will. His eyes were bright blue like my brothers, deep ocean pools. Mine are blue grey like my mother, but I have his smile. He was consistent and fair. He considered the position and intentions of everyone and encouraged me to do the same. He was a brilliant introvert. He loved a good story and books were his oldest friends. Profoundly slow to anger he would raise his voice once every five years. If he raised it at you it was terrifying, but only because it was so rare. He was gentle, and loving, and kind. I always knew my brother and I were his greatest joy. I knew he was proud of us. He was the person in life that I felt I understood most and was the most understood by. 

In many ways I believe he gave me all the tools I needed to navigate his death and life without him. I often know exactly what he would say if he were here, and I were to go to him for advice. I can still hear his voice in my head, but my heart longs to be a little girl again with physical access to him. I loved the comfort of being in his office, back when he smoked a pipe. Vanilla pipe tobacco is still my favorite smell in the world. I love bookshelves full of law books. I can remember the feel of their spines as I’d run my finger tips along them. My bare legs sticking to his overstuffed leather chairs on summer days. To this day I’m freakishly comfortable in an attorney’s office. I haven’t had many reasons to be in one as an adult, but when I am I don’t want to leave. 

When I was in college, my dad told me he didn’t worry about me. He said he knew I would always be ok. I would always find a way, and I’d always be happy. So he didn’t worry. In many ways he was right. I will always find a way, and I’ll be damned before I live a life in misery. I still believe that love is white. It’s pure, utterly without an agenda, and full of hope. Like the love of a father for his daughter. Grief is a funny little beast. It sneaks up so unexpectedly as if time and distance from the loss didn’t exist. It’s a jerk that way, but it often brings gifts if you are willing to really look it in the face. Sometimes grief brings comfort. Sometimes it has to bitch slap you in a cemetery to do it, but it’s worth it.  Go to the cemetery, and remember that love is white.