Making Peace with It—A Spouse’s Story (Part I)


 2016-07-14

I didn’t sleep well the night before I was supposed to join my husband at a gathering for type 1 diabetic (T1D) athletes— the first of its kind. A plan had been made weeks before, but here it was the morning of the event, and I started the usual debate that goes on when my insomnia shows up— whether or not to participate in things, in life. I could have very easily said I needed to stay home. He would’ve agreed to it. I would’ve told him I was sorry—he would’ve soothed me, and gone solo.

I didn’t say anything to him, though— just quietly played an internal game of ping-pong for awhile. Something about him was different on this morning. His usual relaxed demeanor was absent. He was clearly looking forward to the event, even seemed a little nervous, like he was getting ready for a first date. Seeing that resolved the debate for me. I decided to put on my big girl pants, have a second cup of coffee, and get ready to join him as I’d said I would.

I thought too much about what to wear—wondered how I could fit in with a group whose interests vastly differ from my own. I have little personal interest in Crossfit or Olympic weightlifting—my interest only extends so far as that they are what the man I love, loves. I’m present and show genuine interest when he shares his personal bests with me, or what he’s working towards—but my interest is always in him, not the activity itself.

Should I wear my hair up or down? Make-up or no make-up? Work out clothes or regular clothes? I was planning to leave after the speakers, so what I wore really had no practical implications, but that was where my stream of thoughts went. I’m 40 years old, yet I seem to still carry with me certain behaviors I mastered in a childhood that was riddled with change and relocations: the need to figure out what I need to do in order to blend in, not draw attention and transition out of the “new kid” status as quickly as possible (not an easy thing to achieve as a redhead, by the way).

We arrived fashionably late, but before many others. I made my way, alone, to a seat in the back of the room. I watched my husband as he chatted with people he’d spent the past few weeks, or was it months, communicating with on the Facebook forum for those attending the event. It was interesting to watch him. He was sparkling in a way I know is always there, but often just beneath the surface. Most days he’s too tired from the daily grind to muster that kind of radiance at home. Not a complaint, just a fact and side effect of life for those immersed in “adulting” sixty plus hours a week. But it was undeniable— he was clearly energized by the people and the setting. Men and women wanted to connect with him—to share in their common kinship with him.

He made his way to a seat next me. His energy was humming. It was nice. The program started. Each of the speakers offered treasures, nuggets from their own journey of living with and managing type 1 diabetes (T1D) for much longer than “we’ve been dealing” with it. They were heart-full, inspiring. The constant thread throughout each presentation was the fact that the majority of those in attendance had never met another person with T1D, let alone been in a room with 40 of them at the same time. I could feel that fact reverberate throughout the room, until it finally took up residence in the empty chair next to me. I also noticed that I was genuinely glad that I was there—grateful even.

A woman spoke about the way her life and relationship with diabetes had changed since her children were born. Her story is not going to be a tragic one, she said. Her story is not going to be one that joins the ranks of so many who fail to thrive once they’re diagnosed with this dis-ease, she said. She will be alive and well at 75, living life and playing with her grandchildren, she said.

The line about her living well at 75 was when something within me came undone. Unspent tears willed themselves to be recognized. Here? Really? I was completely caught off guard—embarrassed. How ridiculous for one of the few non-diabetic Muggles in the room to be the only one crying. I quickly got up from my chair and stepped behind a shelf of weights, wiped away my tears and patched myself back together. Thank god I’d opted not to put mascara on my bottom lashes.

I rejoined my husband a few moments later, but was lost in an internal dance of unresolved and unfelt emotions about the fact that MY person, my husband, my dearest friend in the world, was diagnosed with this disorder soon after we were married. At the time we were both stunned by the irony. How was it possible for a man whose life and chosen profession for the past 25 years that’s been all about health and fitness could become a T1D? I’d thought that was something that could only happen to children. In the hospital, they called it latent autoimmune diabetes in adults (LADA)— late onset adult diabetes, or that’s what I heard. All I could do was wonder why the hell it wasn’t called LOAD then? What a load of bullsh*t it all was.

He’d started losing weight a month or so before our wedding. We didn’t think much about it because he’d cut way back on his wine consumption. In mid-November we went to a nice men’s store and picked out his wedding suit— it was going to be altered to fit him perfectly. When he picked it up a few days before our wedding in mid-December it was too big, a bit billowy even. But there was nothing to be done about it. It’s what he had, so it’s what he wore on the day we made our promises to one another and sealed off all the exit doors in our relationship. We were in it for the long haul—whatever that’s going to look like, we said.

The weight-loss continued through the holidays—it was steady, nothing jarring. In January, I brought home a half dozen grapefruits from the Saturday Farmer’s Market—he squeezed all of them into a 16-ounce glass and drank it down. I’d never seen him drink juice before. Water, coffee and red wine were the only things I’d seen him imbibe in the four and a half years I’d known him. It was out of the ordinary, but it didn’t seem particularly extraordinary. He asked me to buy more. He was just so thirsty, he said.

I drove to the Farmer’s Market the next day and bought a 25-pound bag because the price was good. I didn’t imagine they would all be for our home. I figured we could take some to our gym and fill up a fruit bowl for our clients. I was wrong. They were gone by the following Friday and he requested that I replenish them again. We continued with that weekly routine until grapefruits were no longer in season. March? Maybe April. Soft whispers were beginning to speak to me, but I was nowhere near making the connections yet. I’d never known anyone with T1D, and I don’t have children, so I didn’t recognize the classic symptoms doing cartwheels in my kitchen.

By late spring he’d lost a lot of weight— forty or fifty pounds of weight. A lot of which was muscle. The whispers were louder now, I was concerned, but I was also caught in betwixt and between as I tried to come up with rational reasons to explain the changes.

We lived in a modern townhouse at the time with unusually large windows. There were many days that I’d get home from work before him and would have a front row seat to witness him as he’d pull into our driveway, get out of the car, and make his way to our front door. The content, easy-going man I’d married just a few months earlier, looked worn and gaunt. Burdened. My self-focus had me worried that maybe he regretted marrying me—that a life with me wasn’t what a man who’d remained single until his forties wanted after all.

I was scared and confused but also tried to give it space,  knowing that the first year of marriage can often be a huge adjustment for everyone. It can be filled with negotiations and challenges no one wants to talk about: the psychological freak out of feeling trapped once you eliminate all the exits, wondering if you really can have varying degrees of the same five arguments with the same person for the rest of your life, the realization that we don’t get to simply coast if we are going to continue to deepen our connection with our chosen mate. No one wants to see or hear about those status updates.

By May his skin color had changed, it was now the palest shade of ash. His clothes looked like hand-me-downs from an older brother. We had a garage sale one weekend—he sold his entire wardrobe to a man who looked much like his former-self for seventy-five dollars. I’d started asking him to go to the doctor the month before, but he refused. My staunchly independent, (stubborn-a**), brilliant husband didn’t feel that was necessary and I certainly couldn’t force him to go. I felt helpless. Neither one of us knew that his brain was starving from the lack of sugar and was no longer capable of making sound, rational decisions.

We went to a party on the lake hosted by one of my clients at the very end of May. We chatted with a man my husband had known for years—he shared a story about their mutual acquaintance he’d run into the month before. The man told us how he’d complimented the woman on her recent weight-loss “success” — exactly the same way he’d complimented my husband a few moments before.

People had been complimenting my husband on this “achievement” for months by this point —I’d started to feel hatred toward everyone around us. I wanted to scream at them, tell them to STOP. The punchline of the story came when the man shared that he’d just found out that the woman had died a week before. She’d had undiagnosed stage 4 lung cancer. Apparently, cancer had been the secret sauce to her weight loss success.

There have only been a few times in my life when I’ve felt that amount of voltage run through my body —the current nearly knocked me over and I felt a wave a nausea that didn’t subside until the following day. I squeezed my beloved’s hand, hard—our not so subtle, private signal for when one of us needs to get out of a situation. He excused us and we walked off to a spot on the fringe of the party overlooking the placid water. I pleaded with him to go to a doctor. I knew something was very wrong and that being told that story wasn’t accidental or coincidence. That was for him, for us. No more whispers. We had a full-on blow horn now.


Read the next installment of Duran’s Making Peace with It — A Spouse’s Story (Part II).

WRITTEN BY J. Duran, POSTED 07/14/16, UPDATED 09/29/22

J. Duran is a writer, maker and tinkerer. She's the creator of Love the Type 1 You’re With—a private Facebook community for spouses and partners of people with type 1 diabetes (T1D). Duran lives in Austin with her T1D, strong-a**, unicorn husband, Kai and their sweet rescue dog, Bailey.