"Being 34 years old and diagnosed with Parkinson’s was quite a heavy thing to be handed. You know, I have certain expectations of what I look like, sound like, and move like. Being a gay man, it’s a part of my identity, how I am is who I am. So being told, at 34 years old, that those things I love about myself could be taken from me was really hard. But when I got the diagnosis, I asked myself, ‘Okay, what’s next?’ I’m a TV producer by training, and the mantra that we go by is don’t come to me with problems come to me with solutions. So I kind of used that mentality to cope with the news because I knew it was something that I would have to deal with. I am not the type of person to sit and dwell.
I’m also not a person who is super focused on physicality, but Parkinson’s forces you to confront the idea of what it means to maneuver in a world that is dominated by able-bodied people; a world that cares so much about the way you look and move from place to place. Living in this world with Parkinson’s made a lot of things that I wanted to do before my diagnosis look like they were slipping away. The life that I created inside my head was gone. It was a feeling that felt like grief, and I did grieve.
I am an active person, and I know my body. And some of the fear was contemplating how that aspect of my personality would change. I truly had to reimagine my life. Would I be able to work long hours? Would I still be able to be creative? Would I have to go on disability? And who do I talk to? There are so few people with this diagnosis at my age that going to a support group with other Parkinson’s patients would be challenging. Most people with Parkinson’s are 65 and up and it would be hard for us to relate to one another. Then there’s my identity. What does that mean for me to remain socially active and connected in my community? I was single at the time of my diagnosis and another question I asked was…who would want to love that? What does that mean long term when at some point you’re going to have to be taken care of? What does that mean to put that on someone? And would I ever do that?
The thought of losing my voice was actually the thing that scared me the most because that is potentially one of the symptoms. It’s a ‘snowflake disorder’ so it affects everyone very differently. Some people may not see any symptoms, some might not have movement in one limb, some may have dry skin, and you may wake up one morning and your foot doesn’t work. You just don’t really know, and because my age made my diagnosis such a unique case the doctors didn’t really know what to do for me.
The thing I think about more than the body issue with Parkinson’s and being gay is that no one wants to be that ‘debbie downer.’ So how do you navigate and find the people that will support you during such a difficult time? There have been shifts in my friends because of it and people who stepped up that I never would have expected. But I had to find people that would talk about the good and the bad, otherwise people don’t realize it’s okay to not always be okay. The ‘bad’ things are necessary to work through, and I have become comfortable with confronting them. It is something powerful that I have taken away from all of this.
Before COVID I would take the stage with over 400 people in the audience because it is what I would love to do. But then there are days when my right hand shakes so bad that I have to bend it and put it behind my back just so it stops. Despite that, I still wake up every day, I’m still on zoom calls with the cameras on, and I’m still working. There are times when people notice the shaking, and they would come up to me and ask me if everything is alright. And I tell them. If people don’t talk about the bad things, it doesn’t leave room for people to actually care for each other.
In the gay community there’s a persistent need to be the best at everything because we have to compensate for something. We ignore the bad stuff, and so we lack vulnerability and the capability to interact with others. Some of us are unable to fully emotionally mature because of our collective trauma. You may find yourself in a place where you need someone to talk to, but you may not always get someone who can truly empathize. For me I can’t blame people for working through trauma, but I also can’t keep them around if they are not what I need and aren’t willing to grow.
That’s why I think gaining ‘found’ family members as a gay person, as a queer person, changes everything. I was lucky to find it first with my friend Paul. It is thanks to him that I am able to be who I am today and have the outlook that I do now. I met him when I was 19 in the parking lot of a mall, and we were best friends until the day he died. I was his primary caregiver for 18 months as he fought leukemia. He taught me more about love and understanding than anyone I’ve ever met. He showed me that you could still be a fierce friend and family member and have fun even when facing bone marrow transplants or worse… He taught me that no matter what happens or what you go through, found family can and will be there for you.
I found another family with my best friend’s family that came into my life a long time ago. It’s because of them that I actually tell everyone that I have six sisters. As far as I am concerned, my best friend and her four sisters are family. There’s no telling me otherwise. So I had the experience of knowing found family pretty early on, and I am so thankful for it. But I also know that I am exceedingly lucky that the family I was born into is still there for me, cares and supports me, and wants to know how my boyfriends are doing. My mom is fantastic for that.
This is all the beauty of being queer. You can have these families in your life that you weren’t born into, and that’s okay because they understand you. It isn’t weird that you have these people in your life that you talk to more than your own siblings, people that know everything about you in and out, or people who your own mom calls their son or daughter. You get to find and choose the family who loves you and wants to be your family. You decide it together, and you know that it is something you both want.
I am truly fortunate because my families, both blood and chosen, are amazing and supportive.
Advice to Dx:Q Readers:
Be kind to yourself. If you aren’t kind to yourself, no one else is going to be. You know some days I just look at my hand and it decides to shake a lot and I get so angry. But I remember to be kind, I have to be kind to myself or else I won’t make it through this.
The other piece of advice I want to give is this: keep moving. It doesn’t have to be lifting a ton of weights or running a marathon. It doesn’t have to be fast. It can be slow and thoughtful. If it wasn’t for Parkinson’s teaching me this lesson, I don’t know if I would have been able to make it through this year in the state that I am in…through COVID and everything that is going on. It is as simple as breathing. Keep breathing, keep moving." -Wes Della Volla, Washington, D.C. (he/him/his)