Talking with Marissa Town, Catalyst for CWD

Marissa Town (née Hitchcock) is the original “why” behind Children with Diabetes. The daughter of Jeff and Brenda Hitchcock, Marissa’s type 1 diabetes diagnosis at the age of two sent her parents searching for community, support, and confirmation that their kid would be okay.

Her diagnosis was the catalyst for the creation of our CWD family.

Thirty years later, Marissa is now the Clinical Director here at Children with Diabetes. She and her husband, Adam, have two children.  She’s been an integral part of the CWD organization since (quite literally) day one, working with families and children as she grew older.  Today, she’s talking about what real life with diabetes is like, from the early diagnosis days to the emotional side of diabetes to fighting against the perception of perfection.

CWD Editorial Team:  Your diabetes diagnosis was the catalyst for the creation of Children with Diabetes. Can you share what you remember about your earliest days with diabetes?

Marissa Town:  I honestly don’t remember a whole lot about it, which I think is lucky. I know many people with very visceral memories of their diagnosis, being in DKA in the hospital, being nervous and stressed. I have a vague memory of being in a hospital bed when I was very young, but don’t have a whole lot of feelings associated with it. The memory that is still clear to me is seeing my diabetes psychologist, Dr. Jill Weissberg-Benchell. I was a toddler, and she gave me a coloring book and crayons, then started asking me questions. And I remember thinking: “Who is this lady and why is she asking me these questions? I just want to color.” I just wanted to be a normal kid, like most toddlers. My parents made sure to treat me as much as they could just like any other kid. This is one lesson my parents try to impress on other parents, treat your children like children first, children with diabetes second. Another lesson in this, always reach out to the mental health care professionals! They know what they’re doing and can help you more than you think.

When my parents would talk about my diagnosis, they told me a few things that stuck with me. First, that the kid next to me in the ER had Cystic Fibrosis (CF), and that was instrumental into their approach in my diagnosis. At the time, CF was still a really tough and fatal diagnosis, and is still much more challenging than what I go through, in my opinion. They sum it up as realizing that diabetes was not a great diagnosis, but it could have been much more devastating. I have a childhood friend with CF, and this was really impactful when I was in my tween years and starting to get tired of doing this whole diabetes thing. Not that I was not allowed to have my “I hate diabetes days,” but that I would still do the work needed to stay healthy.

The second big thing that they told me was that the doctors didn’t believe my parents when they said they thought I may have diabetes or something else really wrong. They had told the pediatrician of my very classic T1D symptoms: begging for water all the time, soaking through diapers, a yeast infection and losing some weight. The first answer they got was, “she’s too young to have diabetes.” My parents learned about the importance of advocacy from the very beginning of our diabetes journey, and this is another lesson that has permeated throughout our lives. Luckily I was never in DKA, despite the doctor’s office waiting from Friday until Tuesday after Labor Day to call my parents with the news that my blood glucose was 680 mg/dL. To top it off I had birthday cake for my second birthday that weekend. Wow, was I lucky!

Otherwise, I don’t remember a lot about the day-to-day, but I know my mom tells stories of chasing me and holding me down to give me injections, which sounds so hard to do now that I am a mom. I also remember having to eat at very specific times and getting snacks at night – often ice cream if I was very active to help prevent the overnight lows I often experienced with NPH. I also vividly remember one of my lowest lows, I went down to 17 mg/dl when I was around 5. We were in Maryland visiting my mom’s family, and I was so hyper I was running up and down the stairs and crashing into the walls and thought it was the funniest thing. Then my parents telling me I needed to stop to check my BG, and that’s it on the memory for me. I’m sure their version is not as fond as mine …

CWD Editorial Team: How do you think peer support affects the way a person feels about their diabetes?

Marissa Town: Immeasurably. I believe peer support is one of the fundamental components of successfully managing diabetes. We as humans are social beings, and whether we like it or not, this means we need each other to thrive. There is nothing more comforting to me than talking to a friend with T1D when I’m having a hard diabetes day. It’s impossible to truly understand the in’s & out’s of diabetes unless you live it. I know I’m still relatively young at 32, but I can say without a doubt this is something that is echoed in people that I meet All. The. Time. It’s always so amazing to me because simply being open and honest about my up’s and down’s (literally) with T1S is the most invaluable thing I can offer someone else with T1D. It’s the littlest things that make a world of a difference.

Imagine you are a teenager and your friends all just got brand new cars. But you got a 1970’s VW instead. It still gets you from A to B, but you will definitely stand out from your friends. It makes more noise, requires more maintenance, is not the status quo, and it’s more dangerous (especially when you’re drinking). Wouldn’t you feel better if you had a friend who also had a 1970’s clunker to commiserate with? And to remind you to appreciate that you have a car at all? Being able to hear someone say, “I understand” and really knowing that they understand this tireless chronic disease that requires management of so many aspects of our lives is so validating. My friends with diabetes are the ones who keep me going on those hard days, which come and go, and I would not be healthy today without them.

There are countless teenagers, kids and even adults who do not feel confident about checking their BG, wearing a CGM or pump where people can see it, taking an insulin injection – all things that are VITAL to them staying alive. One of the biggest ways to help with this is to be in a place with others with T1D and see how normal it really is, even if it’s not everyone’s normal. Peers are key to normalizing T1D and gaining confidence to take care of yourself and be your own advocate. It’s not as easy to do this when you’re a parent, significant other, or HCP of someone with T1D, because frankly, you don’t have to walk the walk. (Though we do appreciate you!)

CWD Editorial Team: How has CWD and FFL influenced how you perceive/wrangle your diabetes?

Marissa Town:  CWD has shown me that no matter what, we will get through this. That I can own my diabetes so that it doesn’t own me. That it will never be perfect no matter how hard we try. That there are so many other people and families going through the same thing, and we can learn so much from each other. It fills up my proverbial bucket of feeling a sense of belonging, and a sense of appreciation even for having diabetes myself. Often I think about who I would be without T1D and without CWD, and it’s very difficult to say because it has been such a central part of who I am for so long. It has driven me to pursue a career in helping others with T1D, making lemonade out of the lemons I was given. CWD and FFL give me the strength, motivation and courage to keep counting carbohydrates at every meal, bolusing as often as I can remember, and being a fierce advocate for people with diabetes.

CWD Editorial Team: Do you think peer support plays a role in how caregivers find their footing with diabetes?

Marissa Town: Caregivers absolutely are much better off having their own peer support! Being a mom of someone with T1D, a life partner, a sibling, whomever, would be so stressful! I am really glad I’m the one with T1D, because I know my own limits. Again, we are social beings, and I really feel that it takes a village for all of us. I think parents especially having other parents to talk to can significantly improve the family relationships and help minimize the stress around diabetes in the family. They can strategize in techniques or conversations that have gone well for them with their kids, and help make their lives better.

CWD Editorial Team: What’s your earliest memory of CWD?

Marissa Town: I remember being a young teen, and being so impressed with the adults with diabetes who taught us about real life with diabetes. I remember being immediately accepted into a community of others who knew what I was going through. This was something I had not previously experienced on the same level. I went to many diabetes camps, but I was different. My parents knew a lot about diabetes, and were always pushing the envelope to get me better care. When I was the first kid to show up at camp with a pump I vividly remember one of the counselors telling me, “the pump is the devil” which ostracized me from my peers. I was also always being switched age groups because of my late summer birthday, so never got the solid consistent friend group that my counterparts did. For me feeling different even at diabetes camp was instrumental in who I am today. I channeled my feelings of hurt and frustration into helping others feel welcome, much like I did with my diabetes stress.

I also never got the real-life education that one of my earliest mentors, Natalie Bellini, provided to all of us in the teen program back then until CWD. She would share things open and honestly, and had an RN and CDE to back it. She is fierce, down to earth, boundlessly energetic, and intelligent. She taught us how to be safe with high risk behaviors, how to talk to love interests, how to tell teachers to back off when they wouldn’t let us go to the bathroom, how to talk to our parents when they were being crazy (love you mom & dad), and overall to be accepting of our own diabetes. She was the first CDE I met who really walked the walk, and I am forever grateful to all that she has done for me and the countless other people and families with t1d.

CWD Editorial Team: And/or do you have a standout memory from a CWD moment?

Marissa Town: I don’t remember the specific year, but when I was a young adult, in nursing school, and I saw how big the Thursday night Banquet was and realized how much CWD meant to so many people. I felt so lucky that I happened to be born into the family I was born into, and that my dad decided to go rogue and create a website right when the internet was started with the goal of simply connecting more families with t1d. I felt so proud that my parents pushed themselves WAY out of their comfort zone and dedicated so much time and energy into helping make the world a better place. It just happened to be T1D was the card we were dealt, and this is the hand they decided to make of it.

CWD Editorial Team: What is the biggest change CWD has made, as an organization?

Marissa Town:  CWD started out in the basement of our house in Ohio. It started as a very simple place that shared kids’ stories of diabetes. It blossomed into an online social network LONG before any social media existed. There were email lists, chat rooms, ask the diabetes team questions. My dad networked with diabetes experts online to help get education to people who needed it from all over the world. When one of the moms from the parent mailing list, Laura Billetdeaux, reached out and said, “Hey let’s go on a big vacation together in Orlando,” I’m not sure anyone anticipated CWD growing into such a large online and professional presence let alone hosting the largest conference targeted for families with diabetes. CWD has always been true to the goal of making peoples’ lives with diabetes and their families better. But the breadth and scope have increased exponentially. Partnering with other organizations to help with various aspects of diabetes care, presenting at the FDA and in Congress on why diabetes coverage and research matters, representing families with T1D to the leaders of the professional health care organizations so that we have a seat at the table, and still being an online resource that you can trust and count on.

CWD Editorial Team:  What’s on your wishlist for the future of CWD, and perhaps for the diabetes online community as a whole?

Marissa Town:  I want the health care community to listen to more of us, more often. I want more HCPs, policy makers, and health care insurance company representatives to come experience Friends for Life and see what diabetes really is about for families, not what you learn from reading a text book. Diabetes is a disease of grey area, nothing is black and white. The only true way to learn it, in my opinion, is to be immersed in it. So let’s get all of the parties at the table, so that we can help more families get the education and support they so desperately need. I want everyone with T1D to know someone else who’s just like them. I want every caregiver of someone with T1D to have someone in their corner to help them. I want PWD to feel comfortable being open and honest with their care with their peers, and advocating for themselves with their HCP’s, jobs, etc. I want everyone to have the skills and support to stay healthy and happy.

So let’s get to it!

CWD Editorial Team:  Anything you’d like to share that has nothing to do with CWD?

Marissa Town:  Just because I am fortunate, does not mean I am perfect and I do not struggle. I have good days and bad days, just like everyone. But because of CWD, I have built and continue to invest my time and energy into a strong support network. I am really enjoying my current work as a Clinical Research Manager at Stanford University. I get to help work on many artificial pancreas studies and work alongside some incredible people and pioneers in the field. I have a loving, supportive husband, Adam, who has always allowed me to pursue my passion for helping others. We have two curious, amazing children who keep us on our toes and a loving rescue dog, Baxter. We are living in Redwood City, California and really enjoying exploring the west coast.

Published: November 19, 2019
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The CWD Editorial team is always hard at work to bring you the latest in diabetes research and news, as well as the info you need to live well with diabetes.

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