At Connected in Motion, we value the opportunity to share the voices and experiences of members of our wonderful T1D community. We are thankful for people, like Paul, who take the time to share their thoughts and stories with us. Here, Paul shares is experience preparing for our upcoming Adventure Team trek. Content warning: this post contains content referencing depression, suicide, sexual assault, and rape.
Words by Paul Vugteveen
When the applications opened for the 2019 Adventure Team Trek, I wasn’t sure that I wanted to apply, and it wasn’t until January — shortly before the applications were due —that my partner Lindsey suggested that I give it a shot. Bless her, because she knows what good it does me when I’m consistently active, and how training for the Trek could be a critical component to managing type 1 diabetes for me.
The problem is that I don’t frequently see myself reflected in much of the online type 1 community—not to say that I don’t appreciate what is there. There is a marked difference between the community that forms when type 1s get together in person and the one that draws attention on social media. As I scroll through my Insta feed past #t1d, past the type 1 accounts, past #t1dlookslikeme, I wonder “where is the connection that I felt in person? Where is the realness?”
Paul on the Escarpment Trail
I see post after post of a smiling face with the latest technology in hand, device on limb or abdomen. A sunny mountain scape, or a “yogi” on a beach. I’ll often see some way of representing someone’s a1c, their current mg/dL or graph trends: up, down, steady…for me, it all falls flat.
It’s hard to name exactly what it is I’m looking for, and so I don’t blame anyone for not delivering. Because my experience with type 1 fluctuates so frequently, a particular solution that has helped in one situation isn’t going to work in another. As so many of us with this disease express, most of the time I am simply tired of it taking center stage in all that I do.
When type 1 data is already all I can see and think about, and when the tech companies are already a primary source of aggravation, the last thing that I need is more data and more triggers—which is what most of what I encounter has become.
In contrast, what I appreciate the most is seeing people with type 1 diabetes in a way that de-centers the disease and at the same time refrains from minimizing the seriousness of it.
And so, even though I’ve been active with Connected in Motion for years, joining the Adventure Team and its small group of t1s feels uncomfortable as hell because I still don’t know where I fit.
With a little over 1 month until I leave for the Trek, I’m excited to say that I’ve never been in better health. Through a relatively loose regimen of diet and exercise, I’ve been able to demonstrate improvements in my overall fitness by a variety of markers.
However, I recognize that I’ve only been able to maintain my current level of wellness due to the particular privileges that I hold:
I have an incredibly supportive partner in Lindsey, who earns the majority of our income and provides health insurance to me. This allows me to operate our food business such that I can prioritize my health over production and profit in a way that traditional employment would not.
Aside from my pancreas, I am able bodied. This means I can run, hike, bike, stomp, paddle, and pretty much do whatever I want to with my body. Coupled with the gift of time, I have been able to push and move my body in beneficial ways that feel good to me, often in ways that other people literally cannot.
Being white means that I don’t have to fear bodily harm while in the rural and remote areas, deep in the woods, where I often find myself training. Being a cis-gender straight man means that I’ve been taught that I don’t have to fear sexual assault or rape if I’m discovered alone on a trail.
Living with this invisible disability has given me insight into other marginalized identities that I may not have otherwise empathized with. Or, in the words of writer Roxane Gay, I am able to live my life with “a greater sensitivity that could only be brought about by the realities of my body.”
Paul at Mirror Lake
Paul’s Cabin
I ask myself often what it means to live into that sensitivity in my daily life. Though I’m sure I’ll never figure it out completely, checking my conduct for appropriateness seems like a critical first step. One way I accomplish this is by not sharing my a1c with others, at least not to the masses. I refrain from doing that for two main reasons:
- The a1c is only one of many indicators of health and wellness (and type 1 management), and is not the definitive one.
Even though I find it absurd to place the a1c on a pedestal, I find myself doing it often. I ask myself “to what lengths should I go to achieve the results that others (endos, industry) want for me? What harm should I cause my body, my brain?” So often I see others starve their bodies of the vital nutrition they need and deserve all in the name of a lower a1c. I choose to first check in with myself, and, with the help of my therapist, I evaluate my mental and emotional well-being. Only then am I able to focus on other aspects of my health.
As someone who has suffered suicidal thoughts, I would not trade my mental and emotional well-being for anything. It is when I am feeling my best, both mentally and emotionally, that I am able to respond to the demands of this disease.
- My a1c may never be achievable for others.
I’ve only been able to achieve my current level of fitness because my privileges, as mentioned, grant me access to necessary tools and resources. It is clear to me that others who do not experience those same privileges may never be able to reach the same outcomes that I have. Others may simply lack the knowledge, support, or motivation.
Training for the upcoming Trek has forced me to wrestle with and attempt to reconcile these things. It has changed both my body and my perspective in tangible, beneficial ways—ways that enable me to live into my life more fully, however any given moment defines that.
I’m looking forward to the forthcoming weeks leading to the Trek, the Trek itself, and to bearing witness to my continued transformation as I connect with others in the best way that I know how.
The CIM Adventure Team, founded in 2016, is a team of exceptional individuals from the Type 1 diabetes community who come together to redefine life with Type 1 diabetes, achieve personal goals, and raise money for CIM to help more people realize life without limits. Each year, people from around the world apply to be a member of CIM’s Adventure Team. Applications are accepted in early January. A selection committee reviews each and every application and makes recommendations to help build a diverse team, announced in early February each year. We are excited to present the 2019 Adventure Team, completing the Chilkoot Trail in 2 groups leaving on July 27 and August 6.
