Living with Osteogenesis Imperfecta (brittle bone disease) comes with unique challenges, one of which is finding a reliable aide to assist with daily tasks and support my creative endeavors as a watercolor artist. While you might assume that finding help would be easy, the reality is far more complex.
What It Takes to Be an Aide for a Disabled Artist
Here’s an example of the ad we use when searching for an aide:
“In search of a woman between the ages of 23 and 45 to be an aide/personal assistant to a young lady with Brittle Bone Disease. Responsibilities include, but are not limited to, assistance with transfers from wheelchair to toilet or lying-down position, hygienic activities, light housework, cooking, and helping with a home business. Applicants must lift 50 pounds easily, be comfortable driving a minivan, and be reliable. Interest or experience in art is a plus. You must love dogs. No medical training required.”
This list might seem straightforward, but there’s more to the role than meets the eye.
Why Prior Medical Training Isn’t Necessary in an Aide
Surprisingly, I prefer hiring aides without medical experience. Here’s why:
- Breaking Preconceptions: Traditional medical training doesn’t always align with my needs. For example, I manage bone disease and chronic pain differently, often avoiding conventional treatments. Starting with someone without preconceived notions makes the process smoother.
- Fear of Breakage: People with medical knowledge often worry excessively about injuring me, which can make moving me more stressful than necessary. The reality of living with Osteogenesis Imperfecta is that fractures can happen unexpectedly—sometimes even from a sneeze. It’s important for my aides to approach their work with care but also an understanding that breaks are a part of my life.
Trust and Reliability
Trust is essential when hiring someone to work in your home, especially when they’ll be caring for you and interacting with your pets. My mother and I need to know that our aides won’t compromise our safety, steal, or accidentally harm our dogs. Building this trust is a significant hurdle, but it’s non-negotiable.
My Current Aides
I’m fortunate to have two incredible women on my team right now. Both were hired through word of mouth, and their unique qualities complement each other perfectly:
- The Organizer: One aide is highly structured and keeps my home and life in impeccable order. While she occasionally struggles with punctuality, she’s always ready to support me in emergencies.
- The Creative Collaborator: The other aide is less organized but thrives in creative projects, cooking, and sewing. Her reliability and punctuality are unmatched.
Both love my dogs as much as I do. Having two aides with different strengths has been a game-changer, allowing me to balance practicality and creativity in my life.
The Importance of Motivation and Kindness in an Aide
As a disabled artist, I rely on my aides not only for physical assistance but also for their emotional support and understanding. Their willingness to adapt and learn is a testament to their character. While I can’t always pay as much as I’d like, I try to show appreciation in other ways, such as bonuses for helping at art shows or access to discounted veterinary care through my mom’s office.
A Positive Work Environment
I believe in fostering a laid-back yet professional atmosphere. While I expect my aides to put in effort and stay dependable, I also want them to feel valued and comfortable. After all, good help is hard to find, and when you do find the right people, it’s worth investing in them.
Final Thoughts
Navigating life with bone disease requires creativity, adaptability, and a supportive team. My aides play a vital role in my ability to thrive as a watercolor artist and manage my daily life. Their kindness, motivation, and dedication inspire me and remind me that the right people make all the difference.