My Human Experience and The Big Picture

I am home from an amazing weekend in Minnesota for the National Prison Doula Training hosted by the Minnesota Prison Doula Project. I went with the ladies from the Michigan Prison Doula Initiative (MPDI). We stayed at a beautiful YMCA camp in Loretto MN. It was peak tree turning time. Everything was a vibrant yellow. It was breath-taking. Coming home, I am humbled and inspired to move forward with some hard and desperately needed work.

It was notable to me that I have not been out and about much since my surgery. I have done things, just not as much.  I have been going to yoga when I can, it is a super priority for me. I helped with our friends wedding. I went up north. My day-to-day though I have stayed home or close to home. I was aware while traveling that I was comfortable because I love to travel but not because if my new situation. With my ostomy bag I need to use the bathroom more frequently and if I don’t the outcome came be very messy and uncomfortable. Luckily the times my bag has had compromises I have been home. My big fear is being out and about and ….. well …. I poop myself. Which means the adhesive on my bag fails and poop seeps out under my clothes where my belly button is. Twice I have had this happen at home while friends were over and they were lovely about it. It has also has happened overnight a few times and I wake up to a wee bit of a mess and my wife is lovely about it also.

My social anxiety was not loud but a notable dull hum all weekend around these amazing women. I was feeling so happy to be in the woods and at a conference but how much awareness I feel I need to have about my body and the closest bathrooms was annoying.

I know when I use the bathroom I am very stinky. It is just a fact that my output is remarkably more pungent than the usual load. I needed to let that self-consciousness go. The bathroom is a process for me and in that process I use more toilet paper than usual. Our TP supply at home has been depleted at an exponential rate since July, thanks to me. Yesterday I was in a stall with no toilet paper, which happens to be one of my fears while out and about.  I had already started the process so I couldn’t just pop out and switch stalls. Luckily the woman next to me was able to share, but it was still not as much as I needed for my process but I made it work.

Before my surgery I loved to shower everyday. It was almost a necessity for mental wellness, a habit I took on when dealing with postpartum depression after my first birth. Since my surgery my feelings about showers have shifted. I still want to love showers but I do not like showering with my bag on because you get out of the shower and the bag stays moist for a bit because the outside is a fabric cloth. If I shower without my bag, I poop in the shower as my ostomy doesn’t stop working just because the bag is not there. I have no holding zone for my output to hang out until the time is right, it is just the free flow of matter brought forth through peristalsis* out my stoma. Some folks may be ok with pooping in the shower but it is not my preference. I was not planning on showering while I was at the conference. I showered Friday morning and was planning on showering Sunday evening when I got home. Sunday morning I felt the desire to rinse off and my hair was a train wreck. So I grabbed my towel, my ditty bag and clothes and made my way to the community bathroom. The shower stalls that had plastic curtains that were not quite enough to cover the whole way. There were gaps on either side. Normally the potential exposure would not bother me so much but undressing with my bag just hanging out and the potential of someone seeing me through the gaps in the curtain made me uneasy. I am barely comfortable being naked around my wife with my ostomy bag – it is a tough mind shift for me even though she is wonderful about it. I need to say I am very aware of how lucky I am that my situation is temporary and I have the gift of sitting with this experience knowing it will be reversed.

I did notice myself wanting to check out of group activities that involved connecting with my body, there was an EFT or tapping workshop. There was also a movement workshop on Saturday evening that normally would be my thing but I chose to not participate – it felt like too much to me which bummed me out a little bit. The silver lining on checking out of the movement workshop was that I was able to receive one on one craniosacral work from a woman who brought her table to share with others. She felt instantly safe to me and I followed that feeling. It was a type of craniosacral I have not experienced before and I really liked it. It was a not still work, there was a lot of movement with it. The best part for me is that she worked on my abdomen and particularly my lower scar. I know this region is carrying a bunch of trauma along with being scar tissue. I was able to speak openly and freely with this woman and she did also. That was a good connection I made this weekend and amazing body work I needed.  I am very thankful for her and that unexpected gift. It is unfortunate she lives so far away because I would continue getting work from her if I could.

Also in the last week getting ready for the conference and starting our hiring of doulas I had to openly admit that I will not be able to work as a doula until after I am healed from my reversal surgery. This was so hard for me to admit that I didn’t even talk to Jenn about it until after I just blurted it out to Jacq and Cara, two of the three other ladies I work with at MPDI. I know it is the best for my health, the women we serve and also to acclimate to my new role as Doula Program Director. It will be a lot of work managing processes and supporting the doulas and the incarcerated folks. I am lucky that I will have office hours in the prison to meet and support the moms and I will be co-teaching childbirth education with Cara. But, I really wanted to serve the women with the work I love. To have to say “I can’t” to doula-ing people who really need and deserve the support makes me sad.

I am aware that I am so blessed that all these things are what I am worried and sad about. My worries and complaints are all so small in the grand scheme of the human experience. I am so lucky that I get to have the opportunity to maybe live a long life. At another place and time my cancer would have brought me to my end sooner than later. I am so fortunate to have healthcare that covers everything I need. I am so grateful that I do not have to worry about money for the things that healthcare does not cover or my lost income from having to shut down my business that was my money-maker. I am grateful for medicine, medical advances and living in a country that surgery and ostomy bag was an option. I am overflowing with gratitude for my family, friends and strangers that have been pillars of support. I am thankful for this space to process the good, the dirty and no so polite subject matter.

My experience is real and I have the right to have my experience but I feel it crucial to also have perspective to a bigger picture. I am so fucking lucky.

I send thanks to the universe and ask that I have enough time on this planet to make a change for the better especially for those who do not have the resources or opportunities as I have been given. I do believe things can and will get better. It will take a long time but I hope to be part of laying the ground work for good and raise the young folks around me to carry on these tasks after I am gone (hopefully a looooong time from now – I have got too much shit to do to check out quite yet)

As a wise woman said this weekend “Step up and step aside”. My interpretation of that is – Step up and use the tools/privilege we have to break through to make change and then move aside to stand next to those who are under represented, under served, and marginalized so we can stand side by side to make change happen. I have been given an extension on life and I am going to use that time to kick ass like a sea bass. I encourage you to do the same because life is limited – what will you do with your time while you are here? Please don’t waste it – this life is a gift.



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