by Riva Greenberg
Published in the JDRF ChapterNews, Spring 2004
If you’re a parent of a diabetic child worried there won’t be a loving partner for your son or daughter, take heart. If you’re a juvenile diabetic, know there are people in the world ready to take up the gauntlet with you. This is the simple story of an ordinary diabetic, who let someone into her life and her diabetes, and how it changed her.
I’m a juvenile diabetic. Although, mind you, at 48, it’s a bit of an oxymoron, isn’t it? I’m also, for the first time, a newlywed. You would have liked it: outdoor ceremony under the fall leaves, people flying in from Europe, roving waiters, superb band, but, unlike the bride who wakes up and all too soon realizes the wedding was the best part of her short marriage, I wake up to a loving, kind and nurturing man, who of all things, wants to be my partner – not just in life, but in my diabetes! Do you know what that means for a Type 1 diabetic who has managed her disease, expertly if I say so myself, for the past 30 years completely in a solitary fashion? To now have a partner in life, in love and in diabetic science! A man who religiously reads Dr. Joe online. Really now, this is going to require much more change than merely exposing my inner most self. This is my diabetes we’re talking about. My shame, my weakness, where my deepest, darkest fears lie, alone, quietly not bothering anyone else.
The first ten years after I was diagnosed I don’t recall telling anyone. Certainly not without a gun to my head. You know, the one that beats on your chest so you can’t catch your breath, causes your thoughts to rise like scrambled eggs and can soon enough transform you into less than your lovely self. Who’d want to bring this up as dinner conversation? A dozen more years go by and my diabetes becomes my true confession, a gift I give a select few friends. But surely not the details, the real ups and downs, the worry that rests far in the back of my head.
For all the dating years, it may have occasionally slid a chair up at the table, but it was always sitting silently beside me. So even when visiting a former boyfriend in London, waking in the middle of the night in need – for sugar – I climbed over his body as he groaned, “What’s going on?” “I need sugar,” I said. He said, “Oh” and went back to sleep. Even then I did not say, “Get up you lout” (well we were in London) or “Is this all you care?” No, of course not. I handled it as I always did. Myself.
Last October I married – and there are still four mah jong players in Forest Hills giddy for my mother – a man who says as soon as he hears the plastic crinkle around the Sweet Tarts, “Are you OK? Are you low? Can I do something?” A man who follows me to the kitchen at 2 A.M. to pour me juice or darts both for the long acting peanut butter bars and my special quick-acting candies with questioning eyes.
How did this happen? Only a year ago, walking to the Holocaust Museum in Washington D.C. with nothing and no one in sight, I felt the beginnings of low blood sugar. We hadn’t yet eaten lunch and I had no sugar with me. I continued to walk hoping I’d see the museum waving like a mirage in the desert, even though it was near freezing. Still, I said not a word. Finally arriving at the museum there was a pretzel vendor who became my unknowing, silent co-conspirator.
I’d had 30 years to convince myself no one who doesn’t actually have diabetes can understand how it works and the toll it takes mentally, emotionally and spiritually, as well as physically. The constant micro-management, the daily balancing, the no-days off policy, the responsibility, yet powerlessness when your body responds unexpectedly. Who can understand all that? I’ve learned who. My husband.
It’s been a learning process for both of us. Suddenly, after ten years of friendship, as he moved from friend to husband in my life, his vague perception of my being a diabetic became startlingly real. He searched Web sites, bought books and wanted to hear everything I wanted to say. And, because he could look into my soul and knows just who I am, I began to open this private world to him.
When my husband first began wanting in, I would shoo him away. “I can handle it,” I’d say. Until I realized I was denying him the opportunity to share this with me, the satisfaction of contributing to my wellness, the intimacy of being with me in such moments. Of course I wanted all those things – just not attached to my diabetes. But, as I began to let him stand by my side over the glucometer, watching for the magic number, as though we’d put money down at the track, I began to know I was safe revealing this part of me too. And I surprisingly find a huge restfulness in having a partner. When I wake in the middle of the night drenched in sweat, he’s there. Of course, at 48, we joke, “Is it low blood sugar or low estrogen?” When I start babbling in the middle of the night making less sense than usual, he brings the juice.I used to enjoy telling the story of how they discovered I was diabetic. “I had an unexpected winter break from my university” I’d say, “and when I awoke in my parent’s house with torturous leg cramps they rushed me to the doctor.” The doctor said, “Two more weeks and you’d be dead.” C’mon, that’s a great story. But now I have a better story. How last year in a moment of true beneficence, I told my now husband he might want to reconsider life with a diabetic. And he said, wrapping his arms around me, “You’re with me now and I’m with you.” That’s my diabetic story now. And I hope I can tell it for a very long time.