Sometimes it's easy to feel demoralized. Especially when coping with the afflictions of the body.
Like when we learned 2 months ago that the reason our 12-year-old son had lost so much weight these past few months and was plagued with digestive issues and weird skin and scalp rashes, was that he has Crohn’s Disease. It is not fatal but it is chronic, with intermittent flare-ups and periods of remission, manageable with diet, medication, and lifestyle adjustments. Diagnosis and treatment monitoring involved an extensive series of tests involving imaging, colonoscopy/endoscopy, and blood draws. The first blood draw had been sheer hell. Two of us, a lab tech and I, had to help hold him and his arm steady while he screamed in pain and, mostly, terror. If there is one thing that rips a Mom apart, it is seeing her child suffer. The 1-minute draw felt like an hour, it was so grueling.
Oh, and my Mom had a recurrence of her non-Hodgkin Lymphoma this year, so she just finished chemotherapy. Did I mention that my Dad still has Alzheimer’s Disease? The main change with him is that he no longer speaks at all and is shakier getting up and sitting down.
To top this off, two weeks ago when I went back to the doctor to find out my lipid panel results, he told me that, despite my having lost 60 pounds and keeping it off for the past 10 months, my numbers suck again. "It's just genetic", he said. "We'll put you back on Zetia.” (He wanted to do Statins, but they gave me such bad side effects that I think of them as an evil to avoid at all cost.)
“Oh, well, it was a good experiment”, he said.
"Experiment?!?" I wanted to exclaim. “My losing 1/3 of my physical self and changing my eating habits was an experiment?!?”
Yes, I know he meant that we needed to see what my lipid levels are at a healthy body weight, without medication intervention. But part of me wants to just scream. Throwing something might not be bad, either.
My LDL – the “bad” cholesterol – is up again. Admittedly I indulge my love my milk fats and carbs on Fun Day. But it is hard to accept that my genetic makeup is such that that one weekly day of indulgence can kick my numbers right back into the hot zone.
In a weird way, though, I feel redeemed that it is genetic and not my fault. I want to shake my Dad out of his senile stupor, summoning forth the doctor in him, shaking my lab report at him and saying, "See? I am doing what you always told me to do, and still! It is not because I was heavy!" Part of me is scared that he will temporarily wake up and say, "Fine, Mrs. Know-it-All, but either way, you better watch those lousy lipids of yours. Genetics! Remember, every cell in your body is half from me!" And then he'd smirk in triumph that somehow, I’d always be a part of him. Just like the old days when he'd drive me insane. And part of me longs for this, too. I really miss him, except when I don’t.
Ultimately, it is too overwhelming to stare all of these issues in the face at once. Like standing at the edge of a tall mountain and thinking, "How the hell do I get to the top?" Nope. We'd never do it if we thought about the whole mountain. We have to take things step by step, setting small objectives. And most of all, appreciating the steps along the way. I can’t wait for all of this to go away so I can live life. This is life. As Erica Brown pointed out,
Anne Lamott in her latest book Stitches: A Handbook on Meaning, Hope and Repair …Creates a metaphor for responding to pain: "We live stitch by stitch, when we're lucky." We live in the moments between, focusing on the way that we stitch, the way we put together into a pattern of meaning that which seems puzzling and vexing. "You have to keep taking the next necessary stitch, and the next one, and the next... Without stitches, you just have rags. And we are not rags."
-- Dr. Erica Brown, Weekly Jewish Wisdom, (24 Heshvan 5775)
So life is keeping me in stitches.
I wouldn’t be so affected by family illness if these people didn’t mean so much to me. There’s the rub: All this stitching can feel constraining, like a corset, so at times I long to break free and say, “I don’t want to have to think about all this!” But other times, the garment that results keeps me warm, loved, protected. I worry because I love these people so damn much.
And then sometimes while I am stitching, seemingly ordinary moments become awesome. Like today, when I took our son to do yet another blood draw/needle procedure. He plopped down on the examining table, held out his arm, and matter-of-factly chatted with the tech, eyes averted but steady as she inserted the needle into his arm and did what was needed. What was once so scary to him is now ordinary. That, to me, is extraordinary. Then we bonded over lunch: Burgers for him, chicken salad for me. And it was good.
Regarding my health, I haven't fallen off the whole mountain, just hit a plateau. My triglycerides are better. My “good” cholesterol is better, almost doubled, from 29 to 53. I feel far fewer aches and pains than I did 18 months ago, so daily living is far easier than it was then. I have better energy and health to handle the nuttiness of life. Not to mention, I have built up an awesome wardrobe. Next step: Add meds and egg substitute. Stitch it up into the next set of patterns.
Most rewarding is that our son is doing much better since starting treatment. His energy, weight and appetite are up. We enjoy fun times with my Mom when we see her. Hubby is well, and older son turns 16 on Monday. And my Dad lets me feed him without fussing.
And now that cold weather is upon us, for my Fun Day, I felt like baking, so I made Martha Stewart'scream scones with currants.
(If you have slogged through this whole post, I thank you. You really sang for your supper this time.)
My modification: I had no whiskey so I soaked the currants overnight in triple sec and cognac! also I shortened the baking time to 12 minutes. True English scones are not browned, just ever so slightly baked. Hubby said they were superb, like the ones we'd eaten in Scotland years ago.
Eat healthy, indulge on occasion, get labs, scream, love your family, laugh. Stitch. Repeat.