Tenderness, Right Below the Surface

My friend J, who I have known for almost two years through my job, died from ALS about 2 weeks ago. I wrote most of what I am sharing shortly after he died, but I have been hesitant to share it here. For some reason I planned to sock it away and close this chapter quietly.

I am not sure why I am sharing it now. I love to write out my thoughts and I think it somehow creates closure for me to open up and share what I’m feeling. Perhaps sharing his story allows me to feel that others might know what an incredible person he was even though no one reading this knew him. Maybe sharing what’s on my heart will help carrying the weight of loss a little lighter. Maybe it’s all of these things for me. 

We can look at death as a relief or a tragedy, in depth or shallow, anticipated or a surprise and we can dive into what it means and how we should approach it and over complicate the whole conversation. Or we can say the simple and uncomplicated truth: my friend was here and now he is gone, and that makes me very sad. I honestly just miss my friend.

Right before his funeral, I read this article about end of life care. These two statements really stood out to me and spoke to why I feel so honored to be in the role I am in:

Providing end-of-life care is a privilege that is hard to choose. It is to choose to go down into the dark with another person, down into the deepest mysteries of the human experience. It is to share in the most difficult journey of a person’s life, a journey from which only one of you will return.

This is where all our work comes to its final fruition. This is where all the labels drop away, and we meet one another simply as humans, sharing the joy and grief, the gratitude and regret that is the common lot of mortals at their common end.

So here are some words about my friend, J.

Working with people who are dying is a privilege I hold very dear. When a person learns the news that they have a disease like ALS where there is no treatment and no cure, it is a traumatic experience. Relationships that begin in these types of situations can be very powerful. J and I connected immediately and had some of the deepest and most profound conversations about life, death, the meaning of it all and how end of life is for people. These are very deep and emotional conversations that made us close friends and confidants right from the beginning.

By the time I met J he had already lost enough use of his legs to need a power wheelchair, so I‘ve never actually seen him walk. He zipped around in that chair and still accessed all areas of his home thanks to his home-made ramps. During our first meeting we sat in his kitchen and looked out his back window at his large back yard, and as though we had known each other our whole lives, he began telling me the incredible loss he felt from no longer being able to do things like mow his lawn. He was so appreciative of his friends who showed up for him and completed tasks like this, but the loss he felt from no longer being able to do these things himself stung him to his core.

I remember having some preconceived notions about J. He was rough around the edges and seemed to take no bs from anyone. He was a construction worker type of man’s man with a hard outer core, so to see him so hurt by the loss of being able to care for things like his own lawn showed me a tenderness about him that I then saw every single time we visited. I feel so honored that he would share that part of himself with me.

It wasn’t long after that when I visited again that J was so excited to show me the adapted lawn mower he and his buddies designed. He said his friend took the racing seat right out of his car to make this lawn mower. I remember thinking how incredibly dangerous this contraption was. It didn’t matter though, once a person knows they are going to die, I mean we all know we are going to die eventually but once a person REALLY knows they are going to die, risk just has a different impact.

Another time I was at J’s house a buddy of his called collect from jail. He was on speaker phone so I heard most of their conversation, which wasn’t about anything in particular. When they hung up J said to me that he bets that was the first call I heard from jail. I laughed and said no and proceeded to tell him about two childhood friends who had also spent some time in the same city jail who used to call me collect regularly. I think he had some preconceived notions about me, too. And clearly I’ve always been drawn to those who, ahem, color outside the lines.

Earlier this year I visited with J when he was really sick. His significant other and I didn’t think he was going to make it through the weekend. He asked me what I thought happened to a person when they died. I told him that I wasn’t sure. I added that that every person I have ever been close to in my life who died, and there have been many, have visited me in a dream not long afterwards. Even my pets who I have lost visit me there. I told him I had no doubt that he would visit me too.

He pulled through that sickness and I was able to see him a few more times. One time, we were visiting at his kitchen table and his dad came to see him. I had never met his dad before so I was excited to hear some stories as we visited and J and his dad reminisced. J told a story about when he was a really little boy and he got angry with his brother about putting too much syrup on his waffles. Apparently J preferred lots of butter that fills all of the waffle squares and very little syrup. He was mad that his waffles had too much syrup and this somehow ended up with his brother convincing him to throw the waffle right at his mother’s face. He got in big trouble for that and sent to his room. His dad then came home and helped to ease the situation. It was a fun time hearing this story and I hope that his dad was able to enjoy the reminiscing, too.

I have worked with and met and counseled many people with ALS and they have impacted my life in many different ways. Knowing J has made an impact on me that I am having trouble putting into words. I think of him when I butter my waffles. I think of him when I talk with my other man’s man rough around the edges friends and wonder if their tenderness is right under the surface like J’s was. I think about the beautiful intimacy that developed between J and his significant other during quiet moments of caregiving that happened when no one else was around. I think about the joy and grief that go along with knowing I never would have met J if it weren’t for ALS, and knowing it was ALS that took him away from all of us who cared about him.

So for now I will be comforted by these memories and carry J’s spirit with me as I continue to fight to find a cure for this disease. I will wait patiently for him to visit me in that dream, where I will see him walking for the very first time, without the pain and loss that came along with ALS.

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I know friends will wonder if I am okay and I really am. I have been anticipating J's death since the moment I met him. It's just part of the job. It is what I signed up for and while some losses are harder than others, I absolutely love what I do. I will never regret being invited into this time with J. I will look back and feel grateful for having him in my life, and will feel sad when I think about never seeing him again. And such is life, right? Feeling all the feelings, taking it all in. Laughing the laughs and crying the tears, all with equal zest.

"If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special." ~Jim Valvano 

On Becoming Untamed

Have you read Glennon Doyle's new book Untamed? If so, the rest of this blog will make sense. If not, and actually even if you have, check out this link to watch an animated video that accompanies the words of the intro to the book.

Like right now, go watch it. Seriously. It's only 5ish minutes and it will explain this idea of becoming untamed better than I can.

💬💭💬💭

Amazing, right? Whew, I can sure relate to Tabitha. It makes me wonder...is my wild hiding under there somewhere?

I am going to spend this blog digging into some of what this book has done for me, and will share a few biggish things I have done so far on my journey to become untamed.

The timing of this book and of this idea is just perfect for me. Do I wish I had these thoughts earlier in my life? Sure, but I don't know if my 20-year-old self would have been able or willing to hear them. 

Before I even read the book, I was making some changes in my life that felt like I was moving past some of the rules I had made for myself and was pushing past some of the limitations I and the world had created. Some people looking in might see these changes as a mid-life crisis. Maybe a mid-life awakening? Or even better, a mid-life untaming.

Am I even in mid-life? When I was younger I never really pictured myself as getting older. I guess if I live to 80, turning 40 is my mid-mark so I think I’ll just go with it.

My almost 12-year-old son and I talk often about the idea of a mid-life crisis. I added a few tattoos to my body in the last year, and he asked me if this was evidence of my mid-life crisis. I never really thought much about it, but after recently turning 41, I have been thinking about this idea of a mid-life crisis. 

When I was younger and thought of people going through a mid-life crisis I pictured some variation of an older man in a convertible or a woman whose clothes looked too young. Basically anyone who appeared to be trying to desperately hold onto their quickly fleeting youth.

These are all stereotypes but it is what I envisioned, and is likely what my son is envisioning as well. 

When I turned 40, many people told me that I was entering the best decade yet. Sure I believed them, but I don’t think I really understood the level of development and self-exploration that would occur in such a quick time as what occurred in my 41st year. 

In my 20s, I remember feeling scared and desperate for an understanding of what life would be for me. Having never imagined myself living very long, I yearned for some predictability and knowledge about what life had in store. I’ve always had a sense of adventure, but at some point in my life, fear took over and I spent a lot of time afraid. Afraid to try new things, to travel too far, to explore the unknown and to even change a well established job. Luckily, I met a man who made me feel safe and encouraged me to explore. Without him, I don't know who I would be today.

In my 30s, our boys were little and dominated my life. It was a struggle to balance being a mom with big career goals. At age 34, I left a comfortable job for one with more challenges and took on running. Running, and more specifically trail running, opened a world to me that allowed me to be strong, and fit, and to forge friendships and go on adventures I never would have done otherwise. It took me three years of running before I would run on a trail by myself. THREE YEARS! I was chipping away at my desire for adventure, but was still very hidden under my fear.

On my 39th birthday, I was diagnosed with cervical cancer. Nothing rocks a person’s world like an illness, particularly the big C. Going through that experience helped me understand the preciousness of life. It helped me to no longer take anything for granted. It helped me look at my own life and demand more from myself. More vulnerability, more risks, more opportunities to live and love in this world. I left a job and started the one that feels like my calling. It is difficult and challenging and keeps me always looking at what it is I am going to do with my one wild and precious life.

After I turned 40, many things just came together for me. I'm excelling in my running, I find my job challenging and fulfilling, I am growing into who I am meant to be. And, as if it was a part of some bigger plan, the book Untamed came into my life. Like her, I have spent my life shrinking and making myself small in order to keep others comfortable.

From the book: "Isn't it supposed to be more beautiful than this?"

I have a beautiful life. One that is filled with a husband who loves me and that I love back. With two young sons that challenge me and help me grow as I help them grow right along with me. I have adventures, and challenges and love and acceptance. I am happy, down to my core.

And...I also see the ways in which I have shrunk myself to keep others comfortable. I have abandoned myself in friendships and rooms and conversations to keep the peace. I have failed to fully embrace the parts of myself that might not be exactly what the world expects from a woman like me, and I am working toward changing that.

These are some things I have done so far on this journey of becoming untamed. Or what I have done so far in my mid-life crisis. It's likely one or the other. Or maybe both. It's probably all just semantics anyway 😊

I bought the Jeep.

For as long as I can remember, I wanted to drive a Jeep Wrangler. Never did I ever consider actually buying one though. These were the messages in my head regarding purchasing anything outside of what I saw as “appropriate” for me. “Who do you think you are? Stay small. Drive something practical that doesn’t attract attention. Sure you have the money, but be smart. That is too flashy. That's irresponsible.”

As I thought through this option, and with the encouragement of all of my boys, I changed the narrative and bought the damn Jeep. I also answered those thoughts that were in my head. “Who do you think you are? I am a woman who does what the hell she wants. Drive what you want, lady. Spending the money is smart, you earned it, enjoy it. And for god's sake have some fun.”

I wear the bikini.

I remember vividly when I was 22 years old some friends and I went on a trip to Colorado to see a 3-night run of Widespread Panic shows. During one afternoon, a few girlfriends were swimming in the pool. They asked if I was going to swim and I told them I was not, and that I was not comfortable in a swimsuit. They asked “even around us?” Yes, even around these friends of mine I couldn’t get past my own body shame and self-consciousness to enjoy the pool with my friends. I just want to go back and hug that little 22-year-old girl. 

I am 41 years old and I wear a bikini to the pool every weekend. Even when I am bloated from too many carbs, or when I am feeling fat because we just feel that way sometimes. I wear a bikini because I like the feeling of the water and the sun on my stomach and because the ones that cover my stomach feel binding. I changed the imagined narrative of others from “who does she think she is” to “look at her, if she can do that so can I”.

I pissed someone off.

Oh man, this has been a hard one for me. I am a recovering people-pleaser. I have spent my life not only sensing what others are feeling, but often actually FEELING what others are feeling. So I can instantly tell when something I have said bothers a person. The body language, the change in eye contact, the way they hold their arms or shift their body. I can just tell. So in most conversations I can tell and adjust what I am saying to influence this. In a way, to control their reaction by adjusting mine. To say this is exhausting is an understatement. To say this is inauthentic should be obvious.

I managed to piss someone off so badly that I have been deleted and blocked from a trail running group with which I have participated in for many years. I clearly made the person in control of this group pretty angry. It’s funny, while getting and staying on someone’s bad side is an unfamiliar happenstance for me, knowing I stood up for something I believe in makes me feel incredibly strong. And a little feisty 😎

I got the tattoo(s).

When I was in college and about 18 years old, I went to a small head shop with some friends with plans to get a tattoo. I knew I wanted a sun/moon combination and saw one in a book of tattoo photos I liked. I told the artist that was the one I wanted. With an attitude I heard as shaming he told me that the one in the book was special for that person, so I needed to find something that was special for me and come back another time. Looking back this was actually pretty good advice, but as a scared and self-conscious 18-year-old, I heard this as shaming and was really embarrassed. I wanted tattoos so badly, but this artist’s voice echoed in my head and I just froze in indecision. This and the fact that my sister had many tattoos, which were mostly not accepted by those around me, I stuffed any desire for a tattoo deep down under a pile of shame and understanding that I needed to stay small, not flashy, and by all means keep those around me comfortable.

Over the years I got a tattoo here and there, but as I approached 40 through now at 41, I have had 5 tattoos added with more on the horizon. I found an artist who has taken the time to get to know me and understand me, who can take what I see and make it my own, so it isn’t copied off of someone in a book. I consider this artist a friend. One who sees me and embraces and understands my desire to add art to my body. Also, I get tattoos because I am a grown ass woman and I do what the hell I want.

The Sky Was Yellow and the Sun Was Blue

Tattoo Credit: Ryan Henerey at Ragtime Tattoo

I signed up for the race {I am doing the thing that scares me}

I registered to run a 100 mile race. At first the decision whether or not to sign up was looming over my head and with my natural tendency to overthink everything, I was again frozen in indecision. What it comes down to is this: it’s just running. That's it. So much of what I was thinking and overthinking was excuse after excuse of why I thought I wouldn’t succeed. Ultimately, I think was scared of failing. Or actually, maybe I was thinking "who does she think she is to think that she can actually run 100 miles?"

The truth is I have no idea if I can finish a 100-mile race and I sure am excited to see if I can. I didn’t know if I could finish a 50k or a 50-miler but I did both and felt pretty incredible the whole time. That’s the thing, every time I have stretched myself beyond what I think I am capable of, I surprise myself. 

I have made a promise to never again abandon myself.

As a life-long perfectionist and empath, I have spent my life keenly aware of the emotions of those around me, and of my ability to manage the emotions of others. I have felt responsible for others' emotions, and put myself in a position to influence those emotions and to help others “feel better” often to my own detriment. I am so used to reading the room and adjusting myself and my needs to meet the needs of others, I usually do it without even noticing.

As the awareness of my tendency to do this became more apparent this past year I decided - no more. Glennon's book is a workbook for those of us who have been conditioned to shrink and fit in and to keep those around us comfortable even to our own detriment. This will always be a struggle for me, one that I am fully committing to.

I accept, deep to my core, that my life is fleeting and one day I will die.

Okay so I know we all know that we are going to die. But do you really know you are going to die? Do you think that this thing or that thing will never happen to you? To some extent I think we all have to push away the looming fact that we will die one day. Working with people who have a terminal illness is a constant reminder that not only is this my one wild and precious life, but it could very well end before I think it should. And when that happens, for the most part, the world will go on. Sure my small circle of people who love me will miss me, and as time goes on they will miss me less, and one day a person will say my name for the very last time.

This fact doesn't make me sad, it makes me want to be intentional. It makes me want to buy the car, to wear the bikini, to piss the person off, to never abandon myself, and to sign up for the goddamn race. 

“Nothing quite brings out the zest for life in a person like the thought of their impending death” ~Jhonen Vasquez

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This list is my own, and it sure has a way to go. I am only one year into the apparent best decade yet, and if the next nine years are anything like this past year has been, my untaming will really be something.

The messages I have received in my life are loud and clear. Stay small. Don't draw attention. Keep everyone comfortable. Tame the wild parts of yourself so you may be controlled and predictable. In her book Glennon describes the women who are held in the highest regard in our society as being completely selfless. So those of us who abandon ourselves for the sake of others are what society paints as the highest goal of attainment. I cannot say it better than she does:

“We weren’t born distrusting and fearing ourselves. That was part of our taming. We were taught to believe that who we are in our natural state is bad and dangerous. They convinced us to be afraid of ourselves. So we do not honor our own bodies, curiosity, hunger, judgment, experience, or ambition. Instead, we lock away our true selves. Women who are best at this disappearing act earn the highest praise: She is so selfless. Can you imagine? The epitome of womanhood is to lose one’s self completely. That is the end goal of every patriarchal culture. Because a very effective way to control women is to convince women to control themselves.”

Glennon Doyle, Untamed #getuntamed

The Origin Story of My Nickname, Anna-Mae

It’s August 2020 and I don’t know about you, but Hamilton the musical has invaded our home and any time we say anything about a room it is followed with “where it happens”. As a huge fan of musicals, I am actually loving it. This line has captured my mind lately though:

“Who lives who dies who tells your story?”

My dad recently shared a beautiful story about his grandmother and it had me thinking; when his generation is gone, who will continue to tell her story? Who will ever say her name again? The story included the fact that she wrote in a journal every single day from 1954 through 1976. He has been reading her journals and it has connected him with her all over again, even though she has been gone for years.

That made me think about this blog. I wrote a lot when BBZ was little, wanting to capture everything he was doing and everything I was feeling as a new mom. As time has gone on I have shied away from blogging about the boys as I now feel protective of their stories and want them to be able to share what they choose about their lives, not what I feel like is worth sharing.

I have also been thinking about capturing some of my own stories that they may want to read one day. So here I am, ready to tell a story.

It’s a just a little one, but one that is meaningful to me nonetheless. It’s the origin story of my nickname, Anna-Mae. Many people have asked me if my middle name is Mae and it is not. There is a fun story behind it though that dates back to 2001-2002.

In college I worked part-time in a group home supporting people with developmental disabilities. I loved the work so much, I decided to stay within the state system and took a job as the manager of a group home where 8 men with developmental disabilities lived in St. Charles, MO.

The group home sat in a cul-de-sac not in a neighborhood but positioned near one, which was an attempt at de-institutionalization and at the time was a big deal. State hospitals were still open and this new semi-integrated setting was all the rage. The home had reopened after being closed for some time and the men who lived there along with the staff and me were new to group home #6.

In this home was a man named RRR. He was one of the kindest, most selfless, funny and positive people I have ever known. He also had a severe seizure disorder and a diagnosis of “profound mental retardation”, back when that term was used widely. I think he was in his mid-50s and used a manual wheelchair. One of his hands was contoured but he was able to wheel himself around his home independently. He and I had an immediate connection.

I imagine he lived all of his life in an institution, as parents of young men with his type of disabilities during his birth time period were often told that is what was best for their child. Knowing RRR though, with the right amount of support he could have easily lived anywhere he wanted, and was happy no matter where he lived. He was a light in this sometimes dark world. Thinking back, my little LBZ would have loved him. In all honesty though, everyone loved RRR.

One of my job responsibilities as the group home manager was ensuring the men in the home maintain their Medicaid status and keep their bank accounts at or below $999, a rule of Medicaid. RRR’s account was edging closer to this parameter and I asked him what he would like to spend some money on. He emphatically said he wanted to be able to listen to music.

So I worked with our accountant to purchase him a Walkman and some audio tapes. He had requested music form the 60s so I found him one with all 60s top hits. One of the songs was “Soul Man” and he would sit outside of my office, which was a hallway coat closet that had been turned into a makeshift office with a desk that I think was an old door that sat upon two file cabinets. There were no computers in offices back then, but the space did give me a private place to make phone calls and work on paperwork.

Anyway, RRR would sit outside of my office with his headphones on singing with more gusto than I can put into words:

“I’m a Soul Man!” (da da da da-da da-daaaa)

“I’m a Soul Man!”

In case you want to hear the song RRR enjoyed so much, check it out here.

I can still hear his sweet voice in my head all of these years later. The other staff in the home were so bothered by this, it would make them crazy! I loved it every single time. His little soul just screamed through that music and he was absolutely in love with life.

So this sweet man just started calling me Anna-Mae one day. I am not sure why. He never explained why and I never asked. He was one of the best people I have ever had the pleasure of knowing. N met him a couple of times during his Special Olympic games and overheard him calling me Anna-Mae, so it has stuck. N still calls me this to this day, and it is all because of RRR.

RRR died a couple of years ago, as did any opportunity for him to create more stories. This one though, I will carry with me for as long as I can. The origin of the nickname he gave me that my husband carries on belongs to RRR and RRR alone. This story will continue with me and I hope it brings a kind smile to your face on this lovely summer evening.

Goodness knows memories of a sweet man named RRR who lived in a group home in St. Charles, MO certainly does that for me.

Running 50 miles while in a Cocoon of Self-Preservation

Sunrise on the river the morning of my first 50 mile run

Back in February I had just finished running with a friend and told him I was thinking of running the marathon distance of an upcoming trail marathon/50 mile race. Without hesitation, my friend said I should just run the 50. This is a friend who has no problem telling me when I am doing something really dumb. Do you have a friend like that? If you do, you’re so lucky. If you have a friend who’s not afraid to tell you that you’re about to do something really stupid then you know you can trust them when they tell you there is something you are absolutely ready to do. Even if it feels huge.

So I did it, I signed up for the 50 mile race that was scheduled to happen on May 16^th, 2020. I was training and not really feeling strong, but I was getting some long runs done.

Then enters COVID-19. On March 15^th St. Louis County shut down. We were on a mini vacation in Branson, MO and decided to avoid the large crowded areas but to continue our trip. It was a nice and relaxing trip and when we returned home, the whole city was sheltering in place. While we navigated through the next few weeks, all events were cancelling, one after another. Including my 50 mile race.

I continued to run, not really with a plan but more with just a lighthearted sense of doing something I really love. As we all began to define what social distancing meant for us, I made the decision to run alone and to not run with anyone at all. Deciding whether to run alone or with a group put many people in the running community at odds with one another. Friendships ended over this. It was sad to watch. I genuinely believe all of us were and are doing the best we can to cope with the situation in which we find ourselves.

What was best for me was running alone. And before I knew it, I was hammering out more miles than ever before.

Another part of this is that I was and still am spending more time with my beloved little family than I ever have. Being home with my family, and seeing them all day everyday allows me the flexibility to be guilt free about spending more time than usual on the weekend on the trails. So that’s exactly what I did.

I spent most of my time training on the trails in Weldon Spring, MO. They are some of my favorite trails and hold thousands of memories of races we put on, of hikes I’ve done with my little family, peaceful sunrises along the river and nighttime miles with friends. Those of us with a special connection with this group of trails say there is magic out there, and I truly believe there is.

I had been running about 35-40 miles each week, with back to back runs on the weekend of 13-16 miles each. One day it was extra crowded when I finished my first of two 8-mile loops, so I decided to cross over to the other side of the highway to add on some miles where there were fewer people. I got to a split where I could either turn right and land at a 20 mile run, or turn left and land around 15. I stood there for a minute, and decided to do the 20.

I had only run 20 miles alone once, and it was nearly two years ago. I’ve done that distance many times in races or with friends, but only once on my own. Finishing that 20 mile day feeling strong, knowing that it was me and me alone who set out to run it, left me feeling so incredibly strong.

That run was a game changer. With my 50 mile race cancelled I am not really sure what I was planning, all I knew was that I was feeling stronger than ever before in my running, and I was doing it for me and for me alone.

The same friend who encouraged me to sign up for the 50 reached out and complimented my solo 20 miler, as did many other friends on social media. I’m telling you, there is something about 20 miles solo. A couple of weeks later, a week before what would have been my first 50 mile race, I hit 50 miles in one week for the first time. I told the same friend that I felt great and wondered what I should do with all of these miles and this fitness. He said:

“I think you should run 50 miles”

Then he gave me probably the best advice possible. He told me I should hammer out two weekends worth of back to back 20 mile runs before I try to do the 50. This would give me more strength and more confidence rather than rushing to run the 50 mile run just a week after my first 50 mile week. This put 50 mile run day on May 30^th. The date and training was set.

So the next two weekends I ran back to back 20 mile runs. My friend joined me for some of the miles but I did most of the miles alone. I spent the first year of my running life running alone. Slowly over time I opened up and started running with groups. Then I started hosting group runs. Then I ran with a group of the same friends nearly every weekend. While all of that was certainly enjoyable, running alone has proven to be what I need at this point in my life to reach my goals.

I want to talk about that for a minute. I am an empath and spend my life deeply feeling and understanding the feelings of others, particularly their pain. It is not something I have chosen, and I truly cannot help absorbing the feelings of those around me. When COVID-19 first hit our community, many people around me were drastically divided in their approaches to group running, social distancing, mask wearing, media believing, etc. I worked hard to try and keep friendships strong and to keep harmony amongst everyone.  

Eventually, this completely wore me down. I retreated into what I have been referring to as a cocoon of self-preservation. I retreated from anything or anyone that would need anything from me besides my little family. I said no to any run invitations. I declined facetime calls. I silenced social media accounts that I didn’t want to see. I retreated so far into myself that I began to be able to be exactly what I needed to be to myself and to my family. My cocoon of self-preservation allows me to truly care for myself and deny giving anything more than the bare minimum to anyone else. This might be the first time in my life that I have ever protected myself in this way. It is the biggest boundary wall I have ever built. And it is strong.

So in this place, where my relationship with my husband and my boys has grown so incredible strong, so has my running. I just run. I don’t think about pace, I don’t think about anyone else. It is me and the trail and my goal to run 50 miles. On one long run my knee began to hurt, so I practiced power hiking and didn’t stress over it. The next day my knee was fine. All the signs were pointing to the fact that I was ready to run 50 miles.

The two weekends of back to back 20 mile runs were nearly perfect. There was sunshine, rain and mud, perfect weather, cold weather, insane heat and humidity too. I was trained for whatever came on 50 mile run day.

The week leading up to the run wasn’t too stressful. Keeping in my cocoon of self-preservation, only my little family, my friend who had been coaching me along who would be pacing me, and 1-2 random friends knew I was going to do this. I didn’t want to tell anyone. This was about me vs. me vs. the trail. I wanted to keep it private and know that if I really needed to, I could stop and do the run another day. Anyone who knows me knows how damn stubborn I am and knows that I would have walked all night long to finish what I started, but having the option to quit if I wanted was some pressure relief one doesn’t find at a race.

The run was as perfect as I could have expected. The weather was gorgeous, my first loop alone was a little faster than I intended and the second loop running with my friend was smooth and fun. At one point, as I talked about how much I was enjoying myself, he said something that basically gave me permission to complain if I wanted to. But I had nothing to complain about.

I am so grateful for the fact that life has put me here in this place where I can and want to run 50 miles on beautiful trails. So many people do not do this. They either don’t want to, don’t believe they can, or maybe want to but their health or circumstances don’t allow for it. Here I am in this place and time where everything has come together for me to spend 12 hours on my favorite trails, with a really good friend with me and my beloved husband and boys waiting for me to finish. I cannot think of anything that would make this situation anything but beautiful. I am so grateful.

The route I took ended with a 5-mile loop from my car, so I grabbed my handheld and took off down the trail I have probably run a thousand times. That’s when it hit me that I was actually going to run 50 miles. I texted Nate to let him know the timeline and we managed to run a lot of that last loop. My legs felt strong and were it not for a nasty blister on the bottom of my foot, I would have been nearly pain free. Tired yes, but certainly not miserable. Absolutely grateful.

So 50 miles is done and I feel amazing. I’m not sure what is next, but I do know I am not interested in slowing down. 

“Man often becomes what he believes himself to be. If I keep on saying to myself that I cannot do a certain thing, it is possible that I may end by really becoming incapable of doing it. On the contrary, if I have the belief that I can do it, I shall surely acquire the capacity to do it even if I may not have it at the beginning.”

~Mahatma Gandhi

The Way Life Should Be

I work with people who have ALS, also known as Lou Gehrig’s disease. The people I work with day in and day out, are dying from a disease that has no cure and no known cause. ALS impacts the way a person’s brain send messages to its muscles, and as the messages become more infrequent, the person loses the ability to use their hands, their arms, to walk, often to speak and ultimately to breathe. ALS is sometimes a long and slow process of watching a once active and vibrant person lose all body control and function.

While this disease is awful, I love what I do. Every single person I meet has a story to tell, and I am always so appreciative to be in a position to share some of the most intimate moments that come along with end of life with another human. The reality a person must face when they are dying brings with it fear, uncertainly and often clarity. With each person with ALS that I meet and each new way I see someone coping with this hand they have been dealt, the more I learn about the strength of the human spirit, and the differences in how people react to trauma and tragedy.

It is May of 2020 and we are deep in the midst of the COVID-19 pandemic. I have been working mostly from home since March 13th with a much unknown end faintly in sight. Our boys’ schools are shut down, summer camps are cancelled, the misinformation is flying all about and the level of uncertainly of what our future will bring continues to deepen. My mood shifts from being ever so grateful for this beautiful time of slowing down and deeply appreciating this extra time with my family to being so stressed by the uncertainly of the future that it feels difficult to even get out of bed. 

I go to the grocery store on Monday or Tuesday nights to avoid the crowds. This week I was walking through the store and paused, looked around the store and saw everyone with masks and gloves, with people avoiding each other, food missing off shelves, paper product shelves stripped bare and I was overcome with sadness and thought, “this is not the way life should be”. 

Working with people with ALS I have seen two pretty distinct differences between people who seem to cope positively (for the most part) with the disease and those who struggle the most. The biggest difference I have seen is between people who can't seem to see past the way their life *should* be and those who seem to let go of what should be and embrace the way life is, ALS and all. 

This difference runs very, very deep. In the people I have seen, this difference is a fundamental difference of belief in life and living. The difference is truly astounding.

A man I became very close with following his diagnosis died earlier this year. He had ALS, but he did not die from ALS. I worked with him for about a year, and throughout that time we had many deep conversations about finding meaning in life. We talked about what he would be doing in life if it weren’t for ALS. He was active and vibrant and while he looked at others with the disease who seemed to be adjusting with awe, ultimately he knew he would never be able to cope with losing his function and dying from ALS. 

He wrote me and said just that, he had no desire to die from ALS and instead chose to travel out of the country to pursue a physician-assisted death. We said our goodbyes and I was sad beyond measure over the loss of my friend. I also understood and respected his unwillingness to let go of what life *should* have been like for him. He died peacefully surrounded by his loving wife and daughter. His service was filled with people telling stories about his incredible life and with each story I understood even better why he and I liked each other so much. He visited me in a dream a couple of weeks after his death and when I woke from that dream, I felt like I understood life just a little bit more. I am so grateful for him and that life allowed me to walk alongside him for a short while.

So when I say that there is this difference between people who seem to be more able to move past what life should be like and those who are not able to so, I don’t mean that one way is better than the other. We are all made up of so many interesting characteristics, it is unreasonable to think it is as simple as bad or good, right or wrong. I do know that my friend worked hard toward accepting his disease and ultimately decided not to. 

Working in a job where every person I am hoping to help is dying, I guess it is expected to also wonder how I might cope with a diagnosis or disease like ALS. My cancer diagnosis certainly tested my coping mechanisms and approach, but not to the extent something like ALS would. 

I am a positive person deep down to my core. I genuinely believe that the universe is a friendly place and that anything that happens in my life is happening for me, not to me. I am currently in a rough place though. The state of the world in the midst of COVID-19 is a difficult place to be. I hear myself saying what should be happening and wishing things were different. My son's missed starring role in theater, the other son's baseball season, pre-pubescent exploration with friends, summer camp, birthday parties and winery trips. My first 50-mile race. I notice it being more difficult to concentrate and am losing focus. I am sad about the ways things are and unmotivated to try and change them. It’s an unfamiliar place and it is not enjoyable.

As I began to write this blog I googled “the way life should be” assuming someone probably wrote something along these lines before and it could provide some guidance as I wrapped my head around what I wanted to say. I did find a couple of quotes from a book of this same title that I have never heard of:

“I have found that the biggest moments in life, the ones that change everything, usually catch you by surprise.” 

“Every decision I make is determined solely by the spark and limitations of my own perspective”

“It’s a longing for things to come, possibilities unfolding before me, the charged expectation of change.”

― Christina Baker Kline, The Way Life Should Be: A Novel

Those who know me well know I will probably never read the book since I have many unread (un-listened to?) books and unused credits on Audible, but these quotes hit home. As my days have blended together I have felt both desperate for certainty and bored by it beyond measure. It’s an interesting and frustrating dichotomy. I realized yesterday I needed to shake something up.

One thing that is on fire in my life right now is my running. I am pounding out the miles and feel so strong and trained. I am able to spend 2 long runs on trails on the weekends which is building my strength and confidence and helping me grow into a really strong long-distance runner. 

I decided to get up early today, drive to my favorite running spot and throw down some mid-week trail miles. This is very unusual for me and it felt like a really special treat. This last quote seems to positively accompany this photo I took today as the sun was rising over what has become one of my very favorite places to visit. 

“... I am halfway between two worlds, the known and the unknown. I feel as transparent as the wind, as if my spirit is hovering in the sky, waiting to land. I am driving toward a future I can't see, leaving behind a past that already feels distant. Nothing is clear - and yet the trees are sharp against the sky; I can see the hard outlines of everything.” ~ Christina Baker Kline

Cheers friends to accepting things as they are, while holding out hope they will soon return to the way we think they *should* be.

The Vomit War of 2020

Alternately titled: That One Time the Stomach Flu Made My Son Shit His Pants and the Dog Run Away In the Middle of the Night.

There is a lot of chaos going on in the world right now. COVID-19 (Coronavirus) is wreaking havoc on the world, our country, and my little community. I told this story on my trail run this morning and my friend said I should write a blog about it. I haven’t blogged in a while so I thought, why not? Let’s all have a common laugh over bodily fluids and midnight antics, shall we?

So N has been traveling a lot for work. He left Monday night and we did all the things on Monday and all the things on Tuesday. I fell asleep on the couch at like 8pm, so I woke up at 8:30pm to put the boys to bed. Bedtime is the best time in our house. We snuggled and goodnight kissed and I went straight to bed myself feeling sleepy from the long day. I was prepared for the full night of sleep I am accustomed to now that my boys are so much older.

Then, at about 11:30pm I got the nudge…”mommy, I threw up”

Ugh. “Okay buddy let’s go get cleaned up” We walked into the hallway, he went into the bathroom and I went into his room. I am not sure I was fully prepared for what I was about to see. I clicked on the light to see more vomit than I have ever seen. It was everywhere. The bed, the floor, on his books, on his carpet, on his slippers, under his bed. It was freaking everywhere.

I started cleaning it up not really knowing where to start. I got some cleaning going and walked back into the hallway to see him standing in the bathroom kind of frozen. I turned the light on to see that he had vomit all over his face and hands. He had been standing there for who knows how long, likely unsure of what the heck just happened to his body.

I helped him wash his hands and face and we decided a bath was in order. Then, he turned toward the toilet and vomit came flying out of his face again. At least he’s facing the toilet, I tell myself. Then I saw it. The splashing, so much splashing! The toilet seat was down. For the love.

I grabbed the trashcan to catch the rest but the damage was done. Vomit was everywhere. Again.

I started to help him take his clothes off when he said so quietly, “mommy, I think I pooped my pants.”

Poor little buddy. This virus was sending itself out of every possible hole it could in a massive attempt to escape his little body. I cleaned him up in the true pre-bath style and got him set up in the tub.

It was around this time that I saw the animals milling around his room and the vomit I had yet to clean up. I decided to let the dog outside since he was losing his mind about why we were all awake at this hour.

With the dog outside and the boy in the tub I knew what I had to do. Clean up as much vomit as possible so the boy and I could get back into his bed.

Towels, paper towels, strip the bed, wipe off the books, trash bag for the book casualties of the vomit war of 2020. Make the bed, add some towels, dry the boy off, get him a bowl, back in bed.

Oh crap, the dog!

Back when I thought he was a good dog.

It’s about 12:15am or so by now, so I go outside and the dog is…gone. Freaking gone. We don’t have a fenced yard but it is tree-lined and the dog usually stays in the yard. Not tonight though, of course.

I put a glowing collar on him at night and he is nowhere to be seen. I put my shoes on and start walking back toward the woods, whisper-yelling his name. I hear nothing. No crunching leaves, no other dogs barking. It is silent and he is freaking gone.

I go back inside to be sure the boy didn’t vomit in his bed again. I look outside to see if the dog came back. I look at the front door to see if he’s waiting. Nothing. Back outside, whisper-yelling his stupid name and asking myself, why do I love this dog??

About an hour goes by, yes an HOUR!! I wonder if I should go out and drive around to find him but decide a lost dog is better than repeating the great vomit war of 2020 because I wasn’t in the boy’s room to catch round 2. Finally I look out the front door and the dog is there, looking quite proud of himself likely because he found his way home from his big adventure.

I went back into the boy’s room and thankfully, there was no vomit yet. He would go on to vomit about every hour on the hour until 11:30am the next morning. Poor guy was so sick.

So there it is, friends. Just another Tuesday night/Wednesday morning in the Z house when N travels, LBZ has the barfs and the dog runs away.

The End.