Tuesday, May 7, 2019

Fully Experiencing Joy

It’s been quiet around here on this blog but things in my life have been less than quiet. Things have been joyous, and I have been soaking it up and basking in the belief that this life is so wonderful. It has not been without challenges, by any means. But after facing something like cancer, the definition of a challenge changes. I am incredibly grateful for where I am in this very moment.

Before I go too much into what I’ve been up to, I want to bring a concept up that sits in the back of my mind and reminds me to feel the joy I feel deeply, without foreboding. 

I have shared many times that Brene Brown is one of my very favorite public figures to follow. Her research-based approach to people and how we interact with the world around us has been life changing for me. One topic she discusses frequently is foreboding joy. She describes joy as the most vulnerable feeling humans can experience. The best example she has shared is that feeling of looking at your child sleeping, and you’re in awe of how much you could possibly love someone and how incredibly happy you are that they are in your life. Then immediately you imagine something awful happening to them. Basically you imagine your incredible joy being ripped away from you. In that moment of foreboding joy, we interrupt the full experience of joy out of the fear of losing it. That is the vulnerability associated with the feeling of joy.

Brene also explains that the antidote to this as gratitude. In those moments when I am snuggling with one or both of my boys and I breathe in their sweet smell and cannot imagine what my life would be without them, that feeling tries to sneak in, but I don’t allow it to. Instead I think about how grateful I am that they are in my life at all. I genuinely cannot imagine what life would be like without them, but I can promise that I wouldn’t trade the time I’ve had with them for anything in the world. If my story would include losing one of them, I wouldn’t do anything different. I would never go back and choose to NOT have them even if I knew I’d lose them. I, and the world around me, is a better place because they have been here. I am so grateful for every minute I have with them, and I will not waste one of them imagining something that hasn’t yet and very likely will never happen.

So all of this to say, I am fully experiencing the joy that is in my life right now. I have a job that is challenging and makes me work hard. N and I are adjusting to his new schedule and are enjoying the quiet life we have built for ourselves. The boys are strong and healthy and happy. I am running more miles and feel stronger than I maybe ever have in my life.

N bought me season tickets to the Broadway series at a St. Louis Theater for my birthday, so I saw some awesome musicals this season.

We added this handsome boy to our family.

I completed another 50 kilometer ultramarathon.

(Photo credit: Mile 90 Photography)

I ran the color run with this incredible group of ladies. They are strong and supportive and my own unicorn tribe.

I was invited to speak at the hooding ceremony where I went to graduate school.
From that talk I was invited to speak at another upcoming event.

I raced a 10k race and set a 2-minute PR.

I have made friends with a group of trail runners who I connect with in a deep and beautiful way. They make me laugh everyday and have offered to change my dirty socks during a run. Now that's friendship.

My heart is happy and full.

Life is good and I am enjoying it as much as I can. It’s funny but as I write this I feel how vulnerable it feels. As though since I am putting this happiness out there it is somehow going to curse me and make something bad happen. Isn’t that crazy how we do that? It’s the knock on wood theory, right? If you say something hopeful out load you have to follow it up with an understanding that it might go away. How crazy is that?

It’s the fear of fully experiencing joy, and I won’t entertain it. I will practice gratitude and recognize all who are hurting right now. I am not hurting, so I am not going to waste my time worrying that I might hurt later.

The new job I started earlier this year is going so well. I work with people with ALS, which is a terminal illness. There is no cure, and there are very few treatments. ALS causes a series of losses that slowly but surely take away all physical abilities from a person, ultimately including the person’s ability to breathe. I work with people in their homes and at their doctor’s office. Sometimes, I am the first person they see after they are told they have this awful disease. 

Can you imagine that for a moment? Seriously. Read this and then close your eyes and imagine what it would be like to sit in a doctor’s office and be told that you have a disease with a prognosis of 2-5 years. A disease that will take your ability to walk, to talk and eventually to breathe. Pause and try to experience what that might be like. Who would you call? How would you tell them? What would you tell your friends and family? What would that pain be like?

I have sat with people who have this disease and I have looked them in the eye as they face their pain. Seeing this kind of pain makes the rest of the world look pretty bright. Being invited into this intimate moment of their life is an honor. Not being able to fix it feels helpless. I cannot fix it, but I can sit with them and assure them that I will not look away. I will not look away from their pain and leave them there to hold it alone. Being able to give them this is one of the most incredible experiences of my life, and I am grateful for the opportunity to be in the position I am in to be able to do this. It feel like it is what I am meant to do.

I practice something similar at home. My LBZ is 7.5 years old now (WHAT??), and he is what I would call a very emotional little guy. When he feels something, he feels it with his entire self. He wears his happiness like a colorful cape that follows him around and shines in the sunlight. His fear and pain come out in bursts of uncontrollable tears and yelling. He is full of big and beautiful emotions.

While he is mostly happy, occasionally he is overrun with sadness. It often happens at night, and his little tears flow and he tells of all of the horrible things that happened in the last few months that feel like they happened in the last twenty minutes. He wraps himself up into a ball of tears and sadness and it can make me feel so helpless.

In these moments though, he doesn’t need me to fix those things that happened. He doesn’t need me to problem solve or tell him that everything will be okay. What I say to him is always the same:

“You are so sad. Everything feels sad. I am so sorry that you’re feeling so sad. I am going to stay here with you so you do not have to feel sad by yourself.”

Isn’t that what we all want when we are feeling sad and overwhelmed? We don’t need someone telling us how to fix it, that only communicates that the person giving advice is better at life than the person struggling. What we want is validation and the knowledge that no matter how bad things get, the person will not turn away from it. It’s a gift we can give someone, to be willing to sit with them and their pain.

So my job is a unique combination of holding space for feelings and helping them to solve the problem. I need to be able to do both, which is a nice fit and combination for my personality style. One of my favorite things to do is problem solve. A man I work with loves to cook but gets very tired when he stands in the kitchen and was looking for something to help him conserve his energy and allow him to keep doing this task that he enjoys so much. We talked about a wheelchair but he doesn’t need that yet. We decided to try an office chair that he can perch up high and roll around from the kitchen to the dining room. I’m excited to see if this works.

Another man I work with explained that he felt incredibly tired after his last doctor appointment because of the long walk from the garage to the clinic. We talked about a manual wheelchair and he is resistant to doing this because the wheelchair means that things have declined. This is a very common issue for people who need adaptive equipment. They see a cane or a walker or a wheelchair as a sign of decline. I work with people to reframe their outlook on the equipment and to try and see it as an avenue for independence, not a sign of things worsening. If he uses the manual wheelchair, he will have the energy to make it through the doctor appointment with a clear and fresh mind. Although as we talked we decided it would be much cooler to have a golf cart driving around the doctor’s building giving people rides. That was a fun discussion.

I know firsthand what it’s like to sit in an office and get news that I didn’t want to hear. My disease had a treatment. My disease had a cure. I can honestly say I have put it behind me, although I do feel a loss I didn’t expect. While N and I were clear that we didn’t want more children, there is a big difference between choosing not to have more children and being unable to have more children. It is a loss I didn’t anticipate that shows up as sadness occasionally. Sadness for what might have been had things been different.

Not that I really wanted more kids anyway. Starting all over with an infant would be SO HARD!