When Chad Was 24, Grief Came Home

My son, Chad Jameson, was a fearless and loving man. He would have done anything for anyone. But he was not able to do what his own soul needed to end an addiction that he battled for a decade.

On Sunday, October 1, he died in a “recovery home” in Annapolis. He was 24. He would have turned 25 on October 7.

If all the people who loved Chad had been able to bottle that love as a cure, he would have been healed and come home again. In fact, any person facing any addiction would have been healed, and no one would have been left to suffer.

And Chad would have been able to come home at last, steady and smart. He’d have banged open our front door and smiled, then grazed through every cupboard in the house and the fridge, eating all food he could find (so long as he need not cook it).

He’d find his little brother, Ian, to wrestle him or arm wrestle or talk so fast I couldn’t understand their words. They would always smile and laugh.

If Gigi, my 3-year old granddaughter were around, he would play with her–or any other child–and make them laugh and feel special and beloved, because Chad himself was still an 11-year old boy, so desperate for the love that vanished when he was three and his mother died in a car crash. How I wish I’d loved him more.

He was so smart and sweet. When he was about four, he heard something about Israel on the radio and said, “Israel? Is Israel real?” He loved the play of words.

I always thought or hoped that when he “hit bottom,” he would come into his own, and touch the lives of children with joy. Instead, may the lives touched by his short life, by his love and, sadly, by his dying, be strengthened. May then know that there is no shame in asking for help. That medication saves lives. That addiction is a disease.

Every life is more than its actions. Every life is the Light it brings to us all.

Please God, let Chad fly at last as the brilliant star dust from which he came, and when we look into the dark and are afraid, let that fearless kid who tried swimming across the ocean to get to Europe that time he was 4 turn his face to home, so that his laughter might lift these heavy hearts. I was not ready for goodbye, nor were any of the broken spirits here, with the holes in our lives. Let his bright Light shine in us and on us. For the ones we love are never far from us. Call their names, pray to them, sing their favorite songs, whisper–they will always come.

Chronic Pain: Living What I Did Not Know

On March 13, 2013, a needle stab or two during oral surgery triggered chronic neuropathic pain, which involves my entire mouth and, on its worst days, my lips, nose, and palate. It is called burning mouth syndrome, a misery I would wish on no one.

I’ve spent the years since then trying to cope with life as a person with chronic pain, trying every medication and complementary treatment my doctor and specialists recommended. As Dr. Victor Montori told me–before I myself became a patient–patients have to complete many tasks, and work to regain health. Doctors must consider what else patients have to achieve while conducting the work of being ill.

Nothing ever really helps–or what sometimes helps causes short-term memory loss–and I’ve been forced to adapt to living with a condition that has upended my life. I’ve also developed several autoimmune diseases, which come and go and flare and vanish, a perplexing mix of symptoms and treatments.

Much irony in this, learning to live with multiple chronic conditions as I age. It’s a topic I’ve written about for many years, especially when writing about how to help frail elders and their caregivers. The issues sometimes seemed intractable, and the solutions often appeared to be simple.

I have since learned how tough all of it can be. In December, I agreed to participate in a new patient-centered medical home (PCMH) project. I signed on with relief, for I could no longer manage the dozen or so medications prescribed by seven different providers–none of whom interacted with the others! Even now, when a clinical pharmacist finally completed her review of my medications, with an eye for spotting any that might be discontinued, I have yet to see her recommendations.

It is not that I have not asked–but that her recommendations were apparently faxed to my primary care provider, who then faxed them to my care coordinator, who concluded that I should not see them until my next appointment with the PCP. Meanwhile, agitated specialists have called me to warn that someone has been calling them to suggest changes to my medications!

Whew! Health information technology (HIT)? Not there–the area’s clinicians have chosen HIT vendors whose programs suit the practice’s needs. This means that they might not connect with the records stored by other clinicians, or the hospital, or the diagnostic tests. I am still responsible for trying to convey the complexity of it all to each clinician, and hope that the independent pharmacist who fills some prescriptions (other than those required by my medical insurance to be called in for maintenance supplies) spots potential adverse effects or interactions.

When I voiced these concerns to my care manager, she noted, “Well, you are a highly educated person who is knowledgeable about what should happen. This [program] is still a work in progress, and it will require many tweaks.”

Tweaks? I’m tweaked! What about those whose health literacy is less sophisticated? I’ve found my own sophistication to be no match for the alternatives clinicians suggest to me. Often, I guess–do I like the sound of the medication? Have I seen it on direct-to-consumer ads? Have I tried it before? What do others think of it?

It seems a foolish and expensive way to make such critical healthcare decisions, yet off I go on this road less travelled. Please take some time to follow me for a while, as I chronicle the next few months–and the work I accomplish.

 

Key Words: chronic pain, pain, autoimmune disorders, care coordination, patient-centered, health literacy

What’s Yupo? Learning a New Technique

A few months ago, an artist friend from a Facebook creativity group began to post gorgeous paintings she had made on paper called ‘yupo,’ which is synthetic paper. Among its advantages are that you can wash off what you don’t like, you can blow the watercolors around the page–with your lips or a hairdryer, you can add gouache and then stencils and who knows what as you create something from very little.

While visiting friends last summer, I gave their daughter $20 to run down to the local art shop, buy 2 sheets of yupo, and get something for herself. Well–the two oversized sheets were $20. (Better prices online, from Office Depot to Blick and  Jerry’s Artarma.) So I chopped the oversized sheets into the 6 x 8 inch pieces I’m more accustomed to working with, and waited a while to figure out what to do with them.

I finally learned, thanks to a class last week with the Muddy Creek Artists Guild, of which I am a happy new member (though I still hesitate to say that I’m an ‘artist’.) An instructor showed us one approach to painting on yupo–clean the paper with rubbing alcohol and, once it has tried, splash a bit of water here and there, and then add up to three complementary colors. You can swirl the paper, or patiently watch the colors swirl. I’m glad I took a picture at this point, because mine was so beautiful that I made it into a card (for sale soon on my Etsy site!).

On sale at JustByJanice on Etsy -- $15 for set of 5!

On sale at JustByJanice on Etsy — $15 for set of 5!

The next step was to pick up the still-damp paper and move it across the room, to set it on the floor with all the other yupo-work, where a fan blew the images dry—and all over the place. I did not have my final one made into a card!

Yupo, large

The next time my daughter came to visit, we took my watercolor pencils and small sheets of yupo, and came up with our own designs–mine, the giraffe with runny mascara and hers the Monet-like abstraction. I may frame them both.

Giraffe with bad mascara and Monet lilies

Giraffe with bad mascara and Monet lilies

The point of all this was that it was joyful, intriguing, and fun. When was the last time you played with watercolors? And why did you stop?

Key Words: yupo, watercolors, Muddy Creek Artists Guild, creativity, learning

Sea Turtles: I Will Not Be Broken

Trying to draw many pictures inspired by songs, poetry, or phrases and people I encounter. This is my image of sea turtles on the Atlantic Coast, from Maryland to North Carolina, trying to make their way to the safety of the ocean. Relative safety, but at least from their nest to the ocean, out of some harm’s way, no doubt into other’s. Here it is.

 

I Will Not Be Broken

I Will Not Be Broken

Stillbirths: All Too Common, Too Much Unknown

To tell this story is to tell its end first. On Sept. 1, 2012, Makenna, the only child of Heather Thompson and Geoff Duff of Alexandria, Va., was born dead. She had been alive in her mother’s womb on Aug. 30, but no heartbeat could be found the next day. Her umbilical cord had knotted, then wrapped around her neck, and, at 39 weeks, she was stillborn. Until her baby’s heartbeat could not be found, Thompson says, the pregnancy had been medically uneventful.

Read the full article here.

Mathematics, Grandmothers, and What Caregivers Need

When I reflect on the question of what caregivers most need, two life-lessons come to me: The first, an expression my grandmother used, the second, something I remember from my undergraduate years as a math student. When I was a child and desperately wanted some thing, my grandmother would say, “Don’t let your wants hurt you.” Instead, she would tell me, be grateful for having what I needed.

The second is a mathematical concept of necessary and sufficient conditions. The concept has to do with the truth of statements—in real life, it is the truth of two conditions.

To read the full post, please follow this link to Caring Across GenerationsCAG grannies.

Photo credit: UDW Homecare Providers Union