Ash Canty (Pronouns: They/Them) | Founder of Sovereign Roots Apothecary

Ash is a black, queer, gender non-conforming antiracist activist and intuitive, based out of Eugene, OR. They are the founder of Sovereign Roots Apothecary which is a collective community space for black and brown folks to connect, heal and experience earth based practices together.

Life With Postural Orthostatic Tachycardia Syndrome POTS a form of Dysautonomia

Ash lives with POTS (Postural Orthostatic Tachycardia Syndrome) a form of Dysautonomia that brings with it a slew of “heart attack” like symptoms and autonomic nervous system failure such as dizziness, nausea, tachycardia,brain fog, temperature dis-regulation, near fainting, high heart rate,low blood pressure, high blood pressure, shortness of breath, chronic fatigue and much more. Ash is also in the process of testing for diagnosis confirmation of another chronic illness called ED’s (Ehlers Danlos Syndrome) which causes hyper-mobility of the joints by an overproduction of collagen in my body causing constant joint pain and gastrointestinal issues.

Both of these illnesses are life long and have no cure. Additionally Ash has lost mobility because of these chronic illnesses and has gone from long bike rides everyday and long hikes to being bed ridden, using a wheelchair and mobility aids as they can’t stand or sit for too long without becoming very symptomatic. They are currently recovering from major surgery in the midst of this Covid-19 pandemic. Subsequently they have started a GoFundMe to help get medical needs and basic supplies required for survival during this time.

Navigating the Health Care System and Wellbeing During COVID-19 as a Chronically ill Patient 

Ways in which the healthcare system is failing you now as a patient, as we navigate this difficult time.

It would just be really helpful to have my health care team just be more available in different ways, like telemedicine or checking up online especially  now because we can’t do it in person. I think that if I did have to go in and the person that there are certain measures that they’re taking, Maybe taking me to a different room that’s not been touched by 1000 people or having a whole separate building, during this pandemic. Also, just regularly checking up on me would be helpful. I haven’t heard from any of the healthcare team at all. And, I just had surgery about 14 days ago, to me that to me is concerning.

Coping with restrictions in regards to Social Distancing

What’s interesting about this pandemic is that in some ways I feel more prepared than most. Because for the last eight months, I’ve been bedridden in the house quarantined. Psychologically, I’ve worked through a lot to be in a place where now even my partner and other people around are freaking out and questioning what we do? I on the other hand have all the tools for this with my healthcare journey over the past eight months.

At the same time, because we’re in such an intense time and because we’re in such a big lockdown, where we can’t even leave our neighborhood at this point, I’m worried. I’m concerned because I’ve been in and out of the hospital for the last several. months, from flares, from dehydration attacks, and things that happened to me that I can’t control, that I need hospital intervention for. For instance, I need IV fluids, and I need to go to my regular doctor often.

There are just so many things that if something happens within this time frame that we’re in of the COVID-19 pandemic, and I need medical care, I’m scared. Because the last place that I want to be is a place where there’s a possible potential for me to get this virus. And I think what I’d like most people to understand too, is that my immune system is really weakened from this chronic illness, so even just getting a common cold or a virus is debilitating. Every time that I’ve gotten a cold or a virus, I’m immediately having to go to the emergency room to get help because my body has an overreaction to what’s going on on top of my symptoms. So this time right now is scary.

In addition, I’m trying to get all the resources that I need on a regular basis mailed to me from complete strangers who are so kind and loving. But I’m honestly relying on the support of strangers and community members and my GoFundMe to be able to even have the financial resources to get the care I need, added to the supplies that I need that I would normally have someone go out for or caregiver help with that can’t even enter my home anymore. So that part feels scary for me.

Advice to the general public about the quarantine and the restrictions around them in having to observe social distancing rules

My biggest advice for People to cope with this time is that we’re in this together. Number one, just stay calm. Find ways that ground you. For me, it’s meditating, waking up not checking my news feed right away, which has been hard. Connecting, if I’m with another person, like my partner, who I’m lucky to have in the house with me. Taking a moment to drop in and being able to be human for a moment together. Also allowing whatever is coming through to come through. There’s gonna be a lot of grief, there’s going to be a lot of frustration,  anger, upset and tears. Then there’s going to be days where it’s like, oh, this is a vacation and it’s so much fun and I can go make a scarf or something. It’s going to go up and down and it’s okay to oscillate and to be between so many different emotions. Be with your emotions and fully express them.

Practically way, take care of yourself, make sure you’re drinking enough water every day that you’re having your meals like you normally would. And that you’re doing things for yourself that feel good and grounding. it’s not easy. It’s hard. But I think there’s a level of acceptance that I’ve had with this and living this way. That has made me less anxious, and less of a feeling of I’m missing out on something in the world, especially now because everyone is actually doing what I’m doing for the first time. Remember we’re all in this together. Lastly, I would say that just also reach out to your community who is online because there are so many people now and so many businesses and support groups. That wasn’t even available a week ago. Communities online are offering free counseling support and a lot of other things.

Empowering Providers to Care for People of Color

I would love for there to be education for health care providers about how they interact and care for people of color and people that are coming from different racial backgrounds because there’s such a lack of understanding, and knowledge. Overall there’s a lack of knowing of who they are as they walk into the room, what historically our history has been, and how history still plays out in those moments, it’s just in a different form. Lastly, they should be informed on how important on how much that influences the experience that I have, certainly in the appointments that I have with the doctors who I go to, and how much I will share and how much I won’t share if I feel like I’m not safe to do that in that environment, as a person of color.

When there are any power dynamics or things that feel uncomfortable, it creates a unhealthy situation and a scary one that doesn’t feel good. I have had a lot of experiences with doctors who were white and who were dismissive of what I was saying. I felt unheard and unseen. It happened so often for so long that it created a lot just mental pain, emotional damage and a questioning of my own self and being that no one should ever have to experience or get through. The awareness or education piece in medical education is so critical. It’s lacking in our healthcare system, and I would love to see that change.

Learn how you can support Ash Canty’s Journey: GoFundMe