In this month’s Community Interview we talk with Saphire about her chronic illnesses and disabilities.

Hello Saphire! It is great to talk with you today. Could you please tell us a little about yourself? 

I live in Northeast Ohio. I have two brothers and was mostly raised by my mom, who taught me the strength I needed to at that time overcome my disabilities to get to this point of understanding my disabilities and the effect they have on them and how to live and strive with them.

I love to read books and take opportunities to join activities in the community to learn about those around me.

I am a public speaker and independent contractor in community education. In the community, I speak at events on life as a person with a disability; I also discuss what it means to show up as our disabled selves. Academically, I speak at events on intersectionality in disability history with other marginalized history groups. I do not have any virtual events now, but I will share when I do. 

What terms do you like to use in relation to your illnesses/disabilities?

Disabled, a person with Disabilities, and a person with chronic illness. A person with Disabilities and Disabled are interchangeable for me. The term I use depends on who I’m talking to or the audience I am in front of.

Do you have a diagnosis for your symptoms?

Cerebral palsy—more on the moderate scale of CP. Affects the lower body (mostly) and can create body pains. I use mobility aids outside of my home to achieve my goals. Cerebral Palsy occurs when the brain’s areas that control muscle movement are damaged or do not develop fully. CP can affect people in different ways. For me, it primarily affects my legs, which is diplegia cerebral palsy, and my speech gives me a slight stutter. I am affected by chronic pain in my back, which has lessened, but I can still have days where it is a bother. 

Asthma: severe the end of chronic illness, but can affect my way of having the energy to complete tasks. Have a physical and emotional trigger in high-emotional situations.

Allergies: newish diagnosis I am still figuring out what the triggers are. I do know it has an asthmatic trigger in different environments.

Hearing Impairment. Auditory processing disorder.

Does having a diagnosis help you? 

Yes.

How long did it take for you to get a diagnosis?

I’ve always known my diagnosis, but as understanding things in groups got harder, it helped to know why. 

When did you first realize that you had chronic illness and how has your journey been since then?

So my chronic illness is asthma, but it has not always affected me until about 5 years ago. I moved to a more damp environment and developed allergies, which can cause me to have an asthma flare-up and be down for days at a time with exhaustion.

How has your experiences of the world changed since your symptoms started?

I have had to add medicine to my everyday life to manage my flare-ups as well, and I am more aware of the places I travel or rely on extra medications.

Do you find it challenging if use mobility aids outside of the house?

I have been using a reverse kaye walker my whole life, so I don’t mind using mobility aids, but sometimes it can be frustrating due to wanting to be independent and social barriers, but I figure it out. This is the link to my experience of transitioning from my walker to my wheelchair: https://blog.christopherreeve.org/en/from-eight-to-twenty-eight-changing-my-perceptions-of-mobility-aids

Which of your symptoms do you find the most debilitating and why?

Either my asthma or hearing impairment. Asthma can create flare-ups and create hospitalizations. My hearing impairment leads to me being overwhelmed when too many things are said to me because both make me feel exhausted.

Can you describe what a bad day symptom-wise looks like to you?

A bad day for me looks like doing nothing and just laying in bed all day.

When you have a good symptom day, what do you like to do?

I love to go on walks when my asthma allows it.

What has been the most helpful for you as you have gone through this journey?

The most helpful thing for me is to have grace with myself and understand that the disabilities I have had my whole life can change what I do in different environments, and when they happen, I need to acknowledge my needs. 

Is there anything you would like people to know about your chronic illness or chronic illness in general?

Whether you developed a disabled or chronic illness or have had it your whole life, learn about it and figure out how it works within you to discover how to live with it, not overcome it, but live in whatever way that means for you. 

Thank you Saphire!

Make sure to follow along with Saphire on Instagram @saphire.murphy