Seosamh's Blog

Here goes:This blog is a long time in the coming for me. I have "belly-ached" about my belly aches all of my life and had few interested listeners. I would have started a blog long ago, but I was just too damn angry. I'm still angry, but I have a better handle on it at the moment. So:After being sick for most of my life, I was diagnosed as a celiac at age 35. I'm now 37, and I am changed. No longer do I wonder about the mysterious, enduring ache in my gut that shadowed me my whole life. It is gone. But many of the secondary illnesses linger, and here's the strange part for me to understand: part of me misses the pains, the dizziness, the exhaustion. I don't want these back; I just need to come to terms with how they shaped my life. These unacknowledged illnesses.I have been gluten-free for about 18 months, and I'm still recovering from the physical, emotional, and psychological destruction that gluten wreaked on my body. Now that I have more strength than I ever had, I have to accept that the decades of my illness were not psychosomatic or imagined pains. They were real; I was sick. Believing this has been hard. I was raised to be strong-willed and taught to not "belly ache" or complain. Yet because my immune system was so weak, I caught illness after illness in addition to chronic diarrhea and malnutrition. I denied or covered my continual illnesses until they forced me to bed.My brothers called me the "faker" or "the wimp" when I felt too ill to go to school or play outside. My older brother called me "consumptive Joe" until I got tuberculosis in my twenties. He then relented but never acknowledged how much I had struggled.People (including MDs) wonder aloud to me what the big deal is about celiac disease; there's no problems as long as I stay gluten-free, right? If my osteoporosis, osteoarthritis, and hypothyroidism are under control--then, yes, the physical problems aren't too bad. But the emotional and psychological aftermath of not trusting one's own gut for 35 years does not disappear overnight.I look at what's going on in New Orleans these days and feel for these people. Writing about one's private struggles while these people have lost everything is difficult. I find myself hesitating, but I'm going to write this. For this first blog, I will also post a few poems that I have written. I've heard of a few other celiac poems, but I haven't read any yet. The three poems below are Elizabethan sonnets--a beautiful form of poetry in English--around for centuries. I chose the sonnet form because writing about diarrhea is always jarring--in this way, I won't attempt to dodge it. I'm put it front and center in complete contrast to the beauty of so much poetry.Some notes on the poems: I was raised Catholic, and as a young boy, we often did not eat breakfast before going to mass. The first thing in my stomach on Sundays, therefore, was the communion wafer. The Body of God being, to me, a glutinous wafter of poison. Painful irony that I now appreciate. At the time, it made my experience more intense, and I was found the mass captivating for years as an altar boy. For the non-Catholics out there, the last words the communicant says before going up to receive communion--"Lord, I am not worthy to receive you, but only say the word, and I shall be healed"--always disturbed me. I felt it a futile request to God because my stomach always did somersaults immediately after eating the host. I took this reaction to be proof that I was not yet worthy.***I Am Not Worthy to Receive YouAfter holy communion, the host and CCD donutsran through me into the toilet. Deep down, evil ruled; the devil made a home in me; my pangs were his. I was told to find my sins—the molecules of the air were filled with my lies—my sickness, anemia, and cramps were psychosomatic, spurred by diet or nerves caused by middle-child envy. Priests, doctors, teachers,counselors, parents, brothers, nurses, neighbors, lovers,said I was imaginative, needy; I learned that self-pity was the greatest indoor sport. Mrs. Leach, in Geometry, announced I was starved for attention. I kept rotting, into my thirties, a celiac starving, when my bodybegan to shut down, and I, at last, wondered what God would make me distrust my own gut.***This next poem might be over the top. Oh well--it's a litany of my ills. Clashing violently with the sonnet form that barely structures it. I'm not sure if the lines, which are very long, will fit on in the blog window. If not, they'll run onto the next line--just imagine them as really long lines.*** Celiac (Mis)Diagnosis The croup, tonsulitis, pneumonia, chronic diarrhea, intestinal cramps, malnutrition, seizure, depression, head-aches, chronic anemia, tuberculosis,dizziness, low-blood sugar, vitamin and mineral deficiencies, mononucleosis, ulcers, hemorrhoids, hypothyroidism, faintness, mitral-valve prolapse, influenza, bloating, viral infections, dermitis herpitiformis, appendicitis, irritable bowel syndrome, heart palpitations, influenza, depression, psilosis,influenza, depression, diarrhea, polyps, bronchitis, malabsorption, leaky gut syndrome, infertility, low-blood pressure, osteoarthritis, osteoporosis, underweight, joint pain, low white-blood cell count, shingles, compromised immune system, infections, low red-blood cell count, low B12, low D, low E, low ferritin, low iron, low glucose, low calcium, loss of enamel, bone loss, muscle loss, Hashimoto’s disease, thyroid nodules, high TSH, ashen skin, weak nails, rectal bleeding, candida infection, chronic fatigue, giardia, parasites, anger, guilt, anxiety, doubt, hunger. ***I wrote a draft of this last poem (below) years before I knew I was celiac. I lived most of my life perpetually hungry, malnurished, underweight, anemic, deficient in vitamins and minerals, and having low-blood pressure. My hunger prompted my imagination and withdrawal into imagined worlds often. Later in life, I was often dizzy, light-headed, confused, and drawn toward spiritual, artistic, and literary ideas. As a child, I found solace in imagined faces and animals coming out of patterns in walls, trees, whatever. I later developed a passion for disillusionment, for vacuation, fitting eh?***Hunger Artist as a Young ManOn the linoleum, holding my belly, I enfold the drama of my thin self.My parents nudge me out the pantry. “C’mon now, get outta here, Joseph.We’ll call you when supper’s ready.”I rise and follow the sunset’s glowdown the hallway, stepping unsteady, as tall giraffes upend and buffalo graze inside the knotted wallboard. I hunker beneath the front stairs, my body taut like a twisted chord, studying Jesus in his second station airs.A hero of hunger under cracking plaster,anemic, wildish after the Master. ***So, that's where I'll leave this blog for today. Filling in a bit of history. I wonder this resonates with other celiacs, especially those who struggled with years of illness, misdiagnosis, and self-doubt. Or if it makes sense to others?Feeling full finally,Seosamh