I’ve reached a point where 20 hookworms are probably going to do all that they can. I have no pain. I’m at my highest weight. My hair is shiny and not broken off. My skin is the clearest it’s been.
The Crohn’s? No pain, no night sweats. No diarrhea throughout the night. I can eat a huge variety of foods I couldn’t before. For this I should be grateful.
And I am, I am. But I’m at the tail end of a few weeks of badly chosen foods. Chinese food followed by cabbage followed by raw vegetables followed by homemade pickled beans. The culmination which means more frequent bowel movements, a diarrhea thrown in, more mucus, more gas. I ran out of VSL#3 a few weeks ago and was substituting some old probiotics, and have started iron pills. I was praying for constipation from them, but no such luck. And I’ve got a bad cough, so I’m just feeling a little sorry for myself. I’m still going to the bathroom at least 3 times a day. SOOOO much better than before, but I just want to have a solid bowel movement every single day, eat some raw vegetables and not have to worry. Is that too much to ask?
The mental agonies of a lifetime of Crohn’s are just not easily swayed. The SSRI has helped – until my hormones tried to envoke the first period after the miscarriage. Two weeks of PMS…the return of anxiety, insomnia that I shut off in a day by swallowing Ambien every night. I hate being on medications at all, the irony of which I am off all Crohn’s drugs, but now need Celexa and Ambien. It’s like the volcano of fears that lay hiding behind the surface of survival have bubbled up. Pay attention to me! You ignored me! I want their ugly bile to spray out into the atmosphere never to return.
How do you erase 22 years of illness? I’m delving into the psychology of my upbringing, working every day to appreciate the little things. But I was talented, advanced. Preened in private school, taught I could do wonders. Learned languages, wanted to travel, I could paint, draw, compose, write. Leaped tall buildings in a single bound.
I’m also good at calculus.
And what have I done with it? I’ve lived in Italy, learned to speak French. Worked as a nanny in Ireland, am respected by my doctors for my acquired knowledge. I’ve met and married a saint for a husband, kept the relationship for over 15 years, had 2 children naturally, nursed them for 2.5 years. Kept them from autism, autoimmunity (so far.) I homeschool, bought a property in the second most expensive place to live in the United States, co-own the house and lot next door, created an enormous garden that people express envy and awe at every time they see it. Have created an artistic community here. Sold paintings, made people cry with my music. Tried hookworms. Learned more than I ever wanted to about them. This blog. All with terrible Crohn’s. A triumph!
Why do I still feel like such a failure?
Every moment is punctuated by the fear of returning to that desperate place. Being housebound, emaciated, with nothing left to try. It was a reality just a few years ago. Even the hookworm journey was frought with stress, as I had strange reactions, experimented with weird dosages, lost the worms, had to try again. Then the FDA steps in, shuts down struggling worm vendors, the Nottingham studies are not very successful, the science rambles on. I like to help everyone with my McMaster egg counts, but why the hell am I doing it at all? Where are the helmith immunologists holding my hand and telling me what to do?
How many gratitude journals will it take to recognize my triumphs? My friends battle cancer, divorce, losing their careers, their houses. I am lucky compared to them. I never had a career to lose. I have a chance again for wellness. The worms have helped and for many that is more than they’ll ever get.
I suppose if I were raised in poverty I would already feel wildly successful. It didn’t help to live near OJ Simpson. For neighbors to sit in their Jaguars and scratch their plastic surgery perfect noses. We were not rich, but surrounded by the ostentation. I had talent and drive to make up for the lack of millions, but Crohn’s finally eroded so many dreams that I became afraid to try again.
I’m supposed to be going back to LA in a few weeks and I am terrified. Will I sleep? Will my father ask why I haven’t finished by book yet, why I’ve only made $800 for a painting and haven’t shown in a gallery for years? Any drug addict can get pregnant, so my children are nothing but successful genes passed on, in his eyes. I try not to listen, but it still really hurts. He’s been healthy his entire life. Is 83 and never been on a single medication. How can he understand? Will I run into my classmates who are now billionaires instead of millionaires, who also have successful marriages and children and not feel like somehow the top of the class has failed in not standing beside them in all their fame and glory?
Does Stephan Hawking feel sorry for himself? Would he feel sorrier if he’d never written a thing?
I’m trying to relish my daughters’ smile. I do, everyday. I hug my husband. I walk to the beach and meditate. My daughters are selfless, they are glorious. I get praises constantly on their character, their beauty, what a great job I’ve done.
Every day, I pray for peace and healing. I pray that more people with IBD will know about the worm option, so that they can prevent their intestines from being cut out, from the ravages of this terrible disease.
Mostly I pray that they can be prevented from the mental despair of giving up time and time again. For the heroism involved in choosing what to eat and wondering if it will hurt coming out, for braving through college and childbirth and just life without chronic illness, chronic fear.
I hope that my children and our future don’t have to walk this path. I sometimes hope that I can breathe out a wisp of curative so that humanity can return to wholeness. Is there a reason for my suffering or was it merely the lack of microbes? My life is beautiful, it’s not that bad. I should be happy. I am.
But will I ever be whole again?
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