JACOB, 27, Sacramento, California
Jacob is a 27-year-old graduate student from California living with cystic fibrosis (CF). He was born and raised in the small rural town of Sonora, CA with his older brother, who also has CF, and his two sisters. Jacob spent most of his early adulthood working in nonprofits engaged in community-level work addressing a host of diverse issues. Jacob has been involved in rare disease advocacy for several years as a legislative associate at Cystic Fibrosis Research Inc. (CFRI) where he focuses on educating lawmakers, proposing policy, and fighting for the rare disease community at the state and federal level. Currently, Jacob is a legislative aide in the Office of Assemblymember Susan Eggman in Sacramento and plans to bring greater change and solutions to the rare disease community.
Find out more about Jacob’s work in this recent article about a rare disease bill he initiated.
In his video, Jacob speaks about the challenges of being in isolation, what non-disabled people should understand, and how he copes with the fears and worries due to COVID-19.
COVID-19 Video Transcript
My family normally does a big barbecue on Easter, we have a lot of young ones in our family, and we do our egg hunt, and I wasn’t able to do that this year. It was the first time I haven’t been able to go to a family Easter, I think, ever. So this is a pretty big disruption to not only my daily life but just kind of like the overall long-term, the way I live my life.
Coping with COVID
I have been coping with a number of different mechanisms. Number 1 is my walks. I take daily walks around my neighborhood in order to get some fresh air and to enjoy some of this beautiful weather we are having here in California, making sure it doesn’t go to waste. And I try to find a way to relax and breathe. I make sure I don’t take my phone with me; I make sure I am in my own space, so that I am able to just breathe and relax. And I enjoy just being out and about for whatever limited time I am able to. I have also been edging up on my movies. There is a long list of movies that I have been wanting to watch, that have been piling up over the nine years of grad school. And I now have plenty of time to get caught up on those. So I have been able to check off quite a bit of my Netflix list and my movie list, which has been really awesome. And I have also been coping with my virtual happy hour with friends. We play board games, or we just sit and talk. I was able to do that with my family; I had one with my undergrad friends; I had one with my grad friends. And that has been really helpful.
Something that I wish non-disabled individuals were aware of in this situation or were paying attention to was that this whole bending the curve, the whole isolation, has nothing to do with them. For people who aren’t in these high-risk pools, it’s about those of us who are in high-risk pools, whether that’s obvious, like our senior population or for those who don’t have invisible disabilities, such as myself and others. You know, a lot of my friends have reached out, wanting to hang out, saying: ‘It’s not a big deal, right? We are young. This isn’t a problem.’ And I have to – again – reiterate again and again and again that that’s not an option for me. I am not one of the young people that can avoid having serious consequences, health consequences from this virus. So I really would wish people would understand it’s not about them.
What can you do?
People are asking me: ‘Oh, how can I best support you?’ I have had friends reach out willing to get me groceries, willing to do virtual calls, willing to run whatever errands I may need. But I think the biggest thing people can do to support each other in this time is follow the rules, follow the orders that have come down from the state and federal level. The sooner this is over, the better it is for everybody. And this happens sooner when we all stay at home, right? When we all stay at home, in isolation, and do what we can to bend that curve, the sooner this is over, and we can all go back to our normal lives. And we can live a life without as much risk as we are currently in now.
What makes me laugh?
So that is what it has been for me. I think the things that really have been helpful, the things that keep me laughing throughout the day, the things that keep me in a positive mindset are the Tiger King series on Netflix was a huge relief, and, as well as watching Broad City on Netflix have been keeping me in high spirits, keeping me positive, keeping me laughing during this time, which has been at times incredibly stressful and throughout most of it incredibly scary. So I appreciate finding the silver lining in situations like this. The ability to take time to pause and reflect on everything that is going on in our lives, the time to rest, has been absolutely crucial. So, I hope people stay home; people stay healthy. And I hope that we can come through this a more connected, more compassionate society.