An Unexpected Chapter: Life with Type 1 Diabetes
Last December, I started feeling off. After a lifetime of needing to be encouraged to drink water, I was suddenly downing as much as I could get my hands on. I was sleeping poorly, waking up covered in sweat, feeling both wired and exhausted and without trying, I somehow lost 10 pounds in a week. Then one day when Julia and I were at the movies, I realized I didn’t have enough energy to cross my legs.
Right after the new year, I found myself in a doctor’s office hearing the word “diabetes” used for the first time. Though at first it was used in a misdiagnosis of type 2, it quickly corrected to my actual diagnosis of type 1 diabetes.
I didn’t know adults could get type 1 (you can read about the differences here, because they are very different diseases) and the shock was real and immediate. It led to the darkest period of my life so far and, thankfully, after five months of crying, yelling, therapy, exercise, change, lots of dog walks (above) and just letting go, I’ve come to accept that this could be an invitation to one of the brightest and most meaningful chapters of my life.
This summer, my company Design*Sponge will turn 12. More than ever, I’ve come to appreciate that Design*Sponge is a very real home for me. It has been the anchor I’ve so desperately needed at some of the toughest times of my life. And I’ve never felt this more so than over the past five months.
Left: My new everyday purse contents: a blood glucose testing device, test strips, test strip control solution, lancets, disposable needles, a journal to log how much insulin I use, two types of insulin (one long-acting I take twice a day and one short-acting I take with food three to four times a day), an emergency glucagon shot, glucose pills for low blood sugar and extra versions of just about everything. Gone are my tiny purse days.
When I started feeling sick, I squeezed my way into a last-minute doctor’s appointment by mentioning that perhaps this was Lyme Disease (a very real concern where we live) and an infectious disease doctor sent me to get 18 tubes of blood drawn to test for everything. He came back into the room and asked me to go downstairs to the lab to have my blood tested again to confirm my A1C.
Most people without diabetes fall somewhere between an A1C of 4.0 and a 5.5. The chart they use to depict A1C levels at the doctor’s office stops at 12. Mine was 14.
That number probably should have sent me to a hospital to check that I wasn’t going into diabetic ketoacidosis, since an A1C of 14 means my average blood sugar was over 400 on a daily basis.
What followed after that was a series of events that would not have happened without the network of friends I’ve found through Design*Sponge. Designer Sara Jensen, whose incredible son, Henry, has type 1 diabetes, reached out to me and suggested I ask them to re-test me for type 1 and not type 2. So I found an endocrinologist and two days later, he confirmed that I had type 1 and would need to learn a new insulin regimen right away.
Right: All of the books and cookbooks I’ve read since my diagnosis in January. I dove in headfirst. If you’re a new person with diabetes or know someone who is, please start with Think Like a Pancreas, it’s my favorite.
I’ll spare you the rest of the details and say that the next month was one of the toughest I’ve ever lived. I read all of the suggested books (above), some bleaker than others, and immediately assumed the worst: that my life span had been cut by at least 10-12 years, that my dreams of starting our family were dashed (how could I take care of someone else when I can barely take care of myself now?), and that I would most likely die early and face blindness or an amputated limb along the way. I spent more nights than I care to admit bursting into tears on the couch. I consoled myself by watching Pixar movies and covering my daily shot “wounds” with Band-Aids that looked like Minions (I had a real “revert back to childhood” moment).
And then I did something that feels like second nature to me now: I talked about my diagnosis publicly. At first, I only talked about it on my personal Facebook page. And what happened next was life-changing: people reached out to me to share support, connect me to other people my age with type 1, invite me to private Facebook groups (my new favorite thing in the world) dedicated to type 1 athletes and type 1 parents and just about every other type of person living with type 1 you could ever imagine. Those conversations, and just watching and seeing people thrive, despite this disease, were the first moments of realizing that my life as I knew it wasn’t over—it was just one major chapter ending, and a new one beginning.
Since January I’ve had 12 rounds of blood work done, had three MRIs, seen eight traditional Western doctors and specialists (I also have a thyroid problem, which often goes hand-in-hand with diabetes), a naturopath, an acupuncturist and a therapist. I know more about my body than I ever have in my entire life, and here is what I’ve learned:
- The human body is an incredible thing. Yes, it can fall apart and let you down, but it also holds amazing minds that dream up things like insulin and glucose pills that can save someone’s life and help you work around the parts of your body that can’t keep up anymore.
- Weight isn’t everything—health is. I grew up battling an eating disorder on and off for the better part of a decade and now that my focus is on health, and not weight, I feel much more connected to my body. It’s like meeting an old friend I haven’t talked to in a long time (and we have a lot to catch up on). Having to count, track and balance every bit of food or drink that goes in my body is definitely a trigger for me, but I’m getting to know what food makes my body healthy now.
- It’s okay to be sad and let go. From January to early March, I was pretty much the worst version of myself. I gave in to fear, anxiety, anger and every other emotion under the sun. I snapped at people. I ignored emails. I dropped projects. I cried constantly. I thought about nothing but my blood sugar numbers and what I was afraid of. But you know what? That’s okay. Because I let myself really go there, now I feel ready to let that moment go and work on embracing a more positive outlook.
- I learned to ask for help. Whether it was letting my wife hold me up (sometimes literally) when I felt like I couldn’t take it anymore or just asking my team to take over some of my work while I focused on healing, I was so buoyed by the people around me who let me know it was okay to take the space/time/support I needed.
- There is no perfect health zone. I’m a classic type A person, and when I was diagnosed I decided I would be the “best” person with type 1 diabetes ever. I would get “perfect numbers” in three months, eat the strictest diet ever and work out every day. And I did all that. But you know what? That’s not realistic. There will be days when I can’t “beat” diabetes no matter what and there will be days when I need to treat myself and not focus on only eating things I know I can control well. Life needs little moments like that to stay sane and right now, the only path to staying happy I can see is one that embraces ups and downs and doesn’t try to turn them into a perfect straight road.
- Technology is amazing (and scary): I basically carry around a few small devices at all times now (to monitor my blood sugar) and next week I’ll start wearing one of these, that’s attached (and partially embedded) on my arm all the time. Eventually, I may end up on an insulin pump if that works best, but learning about the amazing —and slightly overwhelming—things technology can do to keep you safe and alive is pretty incredible. I’m still struggling with feeling like all these devices make me feel like a robot, and not a human, but I think I’ll get there eventually and feel more comfortable.
- Last and most importantly: LIFE CHANGES. We think we have it all figured out and then it reminds us, “Oh you think you know who you are? And what you do? And what it all means? I’ll show you…”
You would think that after working online in the most up and down market ever (does the Internet ever sit still for just a second??) I would understand and embrace this, but I haven’t. There will always be a part of me that wants to just stop and sit still for like, a year. I want the Internet, blogs, life, health and everything to stay exactly the same so I can adjust and get used to it and get into a groove. But that’s never going to happen. And if a disease that is literally all about getting used to highs and lows doesn’t teach me that, I don’t know what else will.