Tag: Chronic Illness

I couldn’t find a baby photo fast enough and this one grabs at my heart too much to let it go. Today marks my eldest’s 14th birthday. Marion embraces life with the same measure of joy and enthusiasm shown here. She knows the ups and downs of life more clearly. She has weathered some upheavals profound and discovered her own wisdom, grace and strength. She inspires me just by being herself. I could say she’s a wonderful artist, a prolific and gifted writer, an insightful teacher, a tough opponent on the fields of debate. But her essence eclipses even those truths.

I can’t not reflect on where I was 14 years ago. It feels like “just the other day.” But it was over a decade! She’s a TEEN. We had a unique beginning. I felt I had an appointment with her, before she was even conceived. The trail to that place of birth was arduous, difficult and yet, so transforming.

So, at this time 14 years ago, I was entering a long dark tunnel of pain. It was, of my three, the worst experience in terms of the rhythm of labor. Transition, the shortest and most painful phase of labor, lasted for hours, not minutes. I was stuck.

I had been on bedrest for 3 months, forced to quit my job in order to insure the pre-term labor I’d experienced not progress into the danger zone. Drugs used to prevent the onset of labor colluded with forced inactivity causing the dreaded gestational diabetes. They made me swell, bloat. Ugh. An now it looked like I would have to take insulin along with the labor-stopping drug. But no. I am stubborn. I risked some minor exercises after every meal in order to avoid the insulin. It’s amazing how the sugars drop from simple leg lifts and arm reps (while sitting or lying down even!). Blood monitoring took on a whole world of sugar maintenance. I became good friends with a tiny needle. As it was, the diabetes food plan would have put me on track for insulin. It had far too many carbs. I chuckled and nodded at the dietician’s suggestions. And then threw the menu away. No way was I going to follow that plan. It’s not like the diabetes had been caused by diet anyway. One of the more common side-effects of Terbutaline was blood sugar imbalance, a struggle I had known without drugs since early childhood.

So, my fingers hurt from doing the extra tests. My thighs were tired of the needle for Terbutaline. But I didn’t care. May baby was my hope. And insulin carried its own side-effects. No thanks!

Chronic Fatigue Syndrome had made things rough. I’ll never forget the day at work when cramps came on like the worst menstrual nightmare. It couldn’t be happening to me. I had willed it not to and had surrendered to a sense of a bigger plan holding me safely. So, surely this was a mistake. CFS and pregnancy was a risk and I knew that fact going into it. But my attitude was to refuse the statistics, the discouragement. I create my world, right? I push past fever, past all these symptoms. Work full-time. Watch my belly grow…

I still remember the dress I wore that day. The excitement I’d been feeling, my belly swollen and beautiful in a whole new way. That there was anything “wrong” brewing just hadn’t registered. My focus was on the positive. And you become accustomed to feeling a certain level of “bad.” It no longer feels like anything qualifying as such. You just keep living (how do you boil a frog?). Besides, you’re pregnant after years of longing.

But you don’t ignore menstrual cramps when you’re 6 months along. So, I left work and headed straight to my doctor’s office. It turned out I’d been running a fever of over 100 degrees all day. All I could feel was shock. “Am I that accustomed to this monstrous ‘syndrome?'” It seems I was. And that is why it has been so difficult for me to accept the canned dogma usually coming from those who’ve never known chronic illness or. Or. I want to say “EH?! You ever walked through life for weeks on end and been thrilled every step of the way only to discover you’ve simply grown used to pain and fever?” It’s all in my “attitude?!” So many philosophies are lovely to believe and more easily embraced by people who’ve never walked the shoes of their own creeds down paths that truly test their merit. The merit of those creeds, that is. When you push past pain daily and do it so well that it’s the stopping that tells on your body, how can it be that you don’t want to live? When you are forever checking up on your soul to see what it is you could be repressing or suppressing that could cause such body protests, how can it be that you won’t face things? How is it that the “cure” is in facing things? It never cured me! How is it that so many people repress, suppress and regress perpetually and are never ill? Too many holes in so many right-sounding pronouncements.

But what we believe can, at least, either carry us through hardships or toss us around on a stormy sea of our own making. What beliefs do to create illness? I find such a leap requires a pogo stick seriously devoted to leaping across whole fields of evidence, ignoring so many other relevant facts. And yet…perhaps my perspective is too narrow. I’m open but not without some worthwhile reserve. Some decades of struggle and some milestone events beg a bit more consideration. Some birthdays ask for a lot more patience in their making…

It was a grand adventure, that pregnancy. We rested for 3 months. I sang to her. Named her before she emerged. Talked to her about her birthday, calling her “May baby…”

There is nothing like a daughter (or son!) to birth a woman. There is nothing like a child to heal the child and nothing like a young lady to challenge you, to give you a whole new set of reasons for hope, for growth and for love itself. Marion’s daily soulful lavishing love-being (and her beautiful boundary testing) perpetually reminds me why we get through the darker nights. To catch even just a glimpse of time with her is worth it all.

jrk