Why Sustain is my Word of the Year for 2019

There are a lot of things that life can become when you’re a person living with a chronic illness and/or disability. Life can become chaotic from trying to manage so many visits to the doctor. Life can become quiet from staying home so much and socializing less. Life can become stressful from trying to manage a chronic illness and the demands of work, relationships, insurance, and so on. But the thing I notice the most is that life just becomes…unsustainable.

Recovering from bilateral hip surgery in 2016 for avascular necrosis — only two months after starting my business and one of several surgeries over the next year

Whenever I look back at the times I struggled in my life with my lupus, my work, or other factors, I could boil everything down to sustainability. Life was not sustainable while I worked full-time. I was incapable tasks like cooking and caring for myself while working full time. Life was not sustainable when I was in an unhealthy relationship. I was unable to have a safe or happy living environment and it was not sustainable to stay in that situation indefinitely. Life was not sustainable before I got my feeding tube and stomach pacemaker. My body was starving every single day and if someone suggested I simply eat (…which they did), that didn’t change the fact that my stomach didn’t move and digest food. Therefore, eating was not sustainable. Eating actually made me sicker.

Custom pet portrait in soft pastel and pastel pencils, 12” x 12”

I have been running a small business for almost three years now and in that time, my business has been in constant evolution, changing based on what I learn and where I need to go. I started my business not fully understanding how to run a business. In the past 3 years, I’ve learned so much from my local Small Business Development Center (find your own local SBDC by searching here) via classes and counseling sessions with my advisor and other small business professionals. I’ve also learned so much from fellow creative entrepreneurs via Rising Tide Society, but especially through the TuesdaysTogether group I co-lead for chronically ill creative entrepreneurs. We often discuss ways to build our businesses to accommodate the uncertainties that surround chronic illness.

The truth is that there’s no real map that can guide someone on a sustainable way to build their business while dealing with managing a life-altering illness. I thought it might be easier because I had learned so much from my years spent in the regular workforce — I knew that above all else, I couldn’t work full-time. I knew that mornings are a bad time for me to work and that I needed to save anywhere from 10-30 hours each week for appointments, driving to appointments, treatments, physical therapy, and testing. I knew that I couldn’t do anything that was too physical or I would need help, if there was something that required too much of my body. I knew that I needed time for rest with no other commitments.

“Autumn Rut” Limited Edition Print of colored pencil artwork

I knew all of this and man, I still didn’t get it right.

Last year, I spent my focus on transitioning my business to add the wildlife side to the pet portraits. In that hustle, the things I knew got lost somewhere along the way. I got caught up in wanting to make clients happy, wanting to see my business succeed, and always feeling guilty that I can’t do more. I stopped putting my health first.

In 2019, I’m giving myself permission to say no when my very limited pet portrait spaces are gone and to not feel guilty that I cannot accommodate more. I’m building rest time into my schedule again, so I can make sure I have plenty of down time to help my body function as well as it possibly can. I will put more energy into the things that will help to strengthen me (and indirectly, my business) and I will give myself permission to say no to the projects that won’t.

With my partner on a family weekend in Grand Lake, Colorado

There are always going to be times in life when we can’t do everything that everyone else wants us to do. For those managing chronic illnesses, that time is everlasting. It beats us down with guilt and makes us feel the sting of feeling unproductive, imperfect, and weak compared to our healthy counterparts. But what I’m realizing is that we only have so much time on this planet and while I want to work and feed my passions, I don’t want to become a chained to them. I don’t want to become a prisoner to my disease either.

This year, I choose to become sustainable again. This year, I’m choosing myself.